Paediatric AIDS Treatment for Africa
(PATA)
The third PATA Training and Development Forum
Manzini, Swaziland
27 November – 1 December 2007
Jointly presented by PATA and Baylor Swaziland
Primary Sponsors: Aurum Funds, Synchronicity and the ELMA
Philanthropies
A participative action-orientated process for clinical
teams delivering anti-retroviral therapy to children in
Sub-Saharan Africa
CONTENTS
First Published October 2008.
Editor: Paul Roux.
Assisted by Melanie Evans.
Design and Typography by Tanya Sternberg.
Printed in the Republic of South Africa,
by Kadimah Print.
PATA Office (South Africa)
14 Bridge Street
Mowbray 7700
Telephone/Fax: +27 (0) 21 686 9710
Postal Address
c/o The Kidzpositive Family Fund
P.O. Box 13657,
Mowbray
7705,
South Africa.
Tel: +27 (0) 21 404 3020
Fax: +27 (0) 21 406 6169
Email: [email protected]
For more information please visit www.teampata.org
Please feel free to use this material. It would be appreciated if reproduction
carries recognition of PATA (Paediatric AIDS Treatment for Africa).
i
Introduction to and summary of the aims of the third PATA forum and
development project (2007/2008)
01
DAY 1: PROGRESS, MONITORING & QUALITY ASSURANCE
09
Plenary Presentations:
1. The Journey to PATA 2007: David Altschuler
09
2. Performance Measurement Quality Improvement and
Comprehensive Care Delivery: Robert Gass, UNICEF
13
3. Implementation of an Expert Patient Programme in Rwanda: Sara
Stulac, Partners in Health (PIH)
20
4. Rwinkwavu Service: Alice Nyirimana, PIH
28
5. Brown Memorial Clinic, Nkhata Bay, Malawi: Charles K. Munthali
31
Evening Masterclasses
34
Tuberculosis Session: Ben Marais & Colleagues
34
TB Management Protocols: James Nuttall,
University of Cape Town (UCT)
34
Care of the Adolescent
43
Why worry about adolescents? Licia Karp, UCT
43
HIV Care for Adolescents: Donna Futterman,
Albert Einstein College of Medicine
44
The challenges of children surviving HIV infection: Rene Nassen,
UCT
46
Evening Keynote Address
48
PMTCT and Paediatric HIV/AIDS Care and Treatment Report Card:
Progress in scaling up responses: Dr Chewe Luo, UNICEF
48
ii
DAY 2: TB/HIV AND CARE OF THE ADOLESCENT WITH HIV
54
DAY 3:
Plenary Presentations
54
Plenary Presentations
Tuberculosis and HIV/AIDS in Children
1. Childhood TB: Epidemiology and Prevention: Ben Marais,
University of Stellenbosch
2. Combining ART & TB treatment in Children:
James Nuttall, UCT
3. Preventing Tuberculosis in HIV infected children:
Helena Rabie
University of Stellenbosch
4. Manifestations and diagnosis of Tuberculosis: Ben Marais,
University of Stellenbosch
Caring for Adolescents with HIV/AIDS
5. HIV Care for Adolescents: Donna Futterman,
Albert Einstein College of Medicine
6. Psychosocial Needs Assessments for Young HIV infected Children: Desiree Michaels, UCT
7. HIV in the HAART era: The neuropsychological impact:
Renee Nassen, UCT
54
60
62
1. Performance Measurement Quality Improvement and
Comprehensive Care Delivery in Hamburg: Carol Baker, Keiskamma Health & Paul Roux, Groote Schuur Hospital
2. Teams working together, addressing change: Diane Melvin, CHIVA
3. Round Table Presentations. Calls from everyday practice: Alice Nyirimana, PIH; Claire Penn, University of the
Witwatersrand & Jenny Altschuler
95
98
103
64
Conference Grid of Tasks elected by Teams:
Summary by Category
104
Participant Comments about PATA 2007 in Swaziland
106
Conference Programme
109
68
71
73
At work: Images from the PATA Swaziland Conference 2007
Evening Masterclasses
74
Tuberculosis Session continued
74
TB/ HIV Anti-retroviral therapy: Helena Rabie, University of
Stellenbosch
74
Complications of Anti-retroviral Therapy (ART): James Nuttall, UCT
78
Adolescent Care continued
88
A model for working with chronically ill adolescents: Licia Karp,
UCT
88
iii
95
iv
22/91
Preface to the 2007 ‘Proceedings’
The PATA (Paediatric AIDS Treatment for Africa) journey continues. From our first
forum in Cape Town in 2005 we have grown and developed through successful and
inspiring fora in Nairobi (2006) and Swaziland in 2007. The most recent meeting and
the subject of this publication, was attended by 42 clinic teams, each comprising a doctor, nurse, counsellor and pharmacist, from 19 Sub-Saharan countries. We were able
to strengthen our francophone contingent and for the first time we were able to host
Portuguese-speaking teams from Mozambique (and would also have had participation
from Angola, were it not for visa difficulties).
The central purpose of the annual PATA forum is to promote teamwork with equality.
We learn and share experience in plenary sessions and in inter-and intra-disciplinary
workshops, encouraging creative solutions and developing new strategies and action plans in our quest to provide better care to more and more children. In choosing
Swaziland for the venue for PATA 2007 our hope was that the presence of almost 200
PATA participants would also bring empathy, inspiration and support to the Swazi nation
and to the dedicated healthcare professionals and volunteers engaged in the fight against
HIV/AIDS.
The first day of the forum was dedicated to reflection on progress made since the Nairobi forum. Teams had an opportunity to share their successes, but were also encouraged
to discuss the challenges they had faced in the previous year. There was an emphasis on
the technical aspects of monitoring and evaluation, because of the general recognition
that while most teams lack resources to carry out these tasks, performance measurement
is essential to validate outcomes for our partners and funders.
Day two of the Swaziland PATA forum addressed the headline clinical topics of ‘Care of
the Adolescent with HIV/AIDS’ and ‘TB/HIV co-infection’. We were very fortunate to
have attracted an excellent training faculty to present master classes and plenary input.
We are particularly grateful to Professor Donna Futterman from the Albert Einstein College of Medicine in New York and to Professor Ben Marais, from the Ukwanda Centre,
the Desmond Tutu Tuberculosis Centre and Department of Pediatrics and Child Health,
Faculty of Health Sciences at Stellenbosch University for finding the time to join us in
Swaziland. They are world leaders in these fields. Their knowledge, wisdom and experience permeated all three days of the forum.
Participants were also privileged to benefit from the input of the experts who contributed to day three of the forum, which addressed team functionality and communication
styles. This part of the meeting was led by Stephen Rollnick, Professor of Health Care
Communication in the Department of Primary Care and Public Health at the University
of Cardiff in Wales.
v
Day three concluded with intensive small group activity, during which participant teams
decided on projects they plan to tackle and complete during the next PATA year. The
fruits of their deliberations are listed at the end of these proceedings.
The PATA forum is just the kick-off point, however. The real work begins in the second
phase of the PATA process when teams go back to their home clinics, share with their
fellow practitioners what they have learned at the forum (the ‘PATA effect’ ) and start
working on the tasks and projects they have identified as their individual clinic’s
priorities.
The ‘PATA effect’ is most powerful at grassroots level, where affiliated teams see the
benefit of the projects they undertake in the course of the ‘PATA year’. The cumulative
impact of these projects is difficult to measure and not easy to publicise. Perhaps the fact
that more than 80 clinic teams have applied for the 40 team places open for participation
in the 2008 PATA forum in Kigali, Rwanda, is evidence that this ‘PATA effect’ makes
a difference where it is most needed: in the lives of children with HIV/AIDS and the
families that care for them and in the lives of the health care workers.
In the course of the last year, one of the most visible and successful pan-PATA projects,
the ‘Expert Patient’ initiative, now being piloted in 35 clinics, was presented at the International HIV/AIDS Conference in Mexico City by our Project Director, Melanie Evans.
The Baylor Teams in Swaziland, and Busi Bhembe in particular, were most hospitable
and made sure that all our border crossings were uneventful. Our warm thanks to them.
The visit they arranged to one of their clinics was much appreciated by conference
participants who were able to go.
The success of our clinical teams is as dependent on teamwork and partnership as we are
on the support of our funding partners. We are most grateful to One to One Children’s
Fund, our funding stalwarts Aurum and Synchronicity, our francophone funder, Sidaction and our new funding partner, the ELMA Philanthropies, for having made this forum
possible.
Finally we would like to thank our PATA steering committee colleagues for their commitment and guidance in the planning and implementation of the annual PATA forum.
Each year we move to a new region; our aim is to create a legacy of new projects, improved practice and renewed enthusiasm for all participants, as we reach out to children
and families infected and affected by HIV/AIDS – to give them the care, treatment and
support they desperately need and truly deserve.
David Altschuler & Paul Roux
PATA Co-Founders
vi
Introduction to and summary of aims of the third PATA forum
and develop project (2007/2008)
PATA (Paediatric AIDS Treatment for Africa) aims to promote and facilitate quality
health care through teamwork. PATA meetings are unique in that they consist of a series
of team workshops, designed to help health care teams reflect on their current performance and to take on new tasks to improve their team’s delivery of health care in the
following year.
A PATA meeting is not a traditional conference:
1.
2.
3.
4.
5.
6.
7.
8.
It is a consultative assembly of teams delivering health care
As a team staging post, the PATA meeting is both an opportunity for self-
assessment and a training event
Teams of health care workers meet to compare experiences, both within their own team and with other front-line teams
They assess their current performance
They elect tasks aimed at improving the quality of care they deliver
The meeting provides expert advice and practical mentorship
A PATA conference is the beginning of an annual project
During year that follows the meeting, teams complete elected tasks, with access to mentorship from the PATA faculty and affiliated experts.
The first PATA conference was attended by 22 teams from 8 countries. The majority of
teams were from South Africa. The second PATA conference in Nairobi, Kenya, was
attended by 33 teams from 18 countries. Thanks to additional funding, 42 teams from
19 countries attended the third PATA forum in Swaziland. For the first time, Portuguese
speaking (Lusophone) teams from Angola and Mozambique were invited, and simultaneous translation was available in three languages (English, French and Portuguese).
As was the case with the first two conferences, teams were brought together to exchange
experiences, to examine their current practice and to explore ways of developing an
improved clinical model for the delivery of health care and anti-retroviral (ARV) therapy
to children in Sub-Saharan Africa.
As before, treatment teams were defined as consisting of 4 health care workers from
each care delivery site. Ideally, but not always, treatment teams were made up of four
professionals:
1
A clinic nurse (nursing sister)
A counsellor (or a social worker or psychologist)
A pharmacist
A physician (usually but not necessarily a pediatrician)
Participants
Invitations were issued to teams from Sub-Saharan Africa, including francophone West
Africa. Teams were invited from both rural and urban sites. South African teams (10)
made up the largest group attending the conference, followed by teams from Kenya (4),
Uganda (4), Rwanda (3), Swaziland (3) Tanzania (2), and Mozambique (2). Namibia,
Botswana, Burkino Faso, Burundi, Cameroon, Cote d’ Ivoire, DRC, Lesotho, Malawi,
Ghana, Zambia and Zimbabwe were each represented by one team. The Angolan team
could not attend. They were turned away at the airport in Luanda, because their travel
papers were not considered to be in order.
The geographic spread was determined partly by whether teams could find funding for
travel and accommodation. It is generally true that while physicians can sometimes find
support to attend conferences, nurses, counsellors and pharmacists find this more difficult. The organizers of the Swaziland meeting undertook to pay for all teams participating in the PATA process for the first time, but requested teams attending for their second
conference to find their own funding.
Teams that had attended a previous conference, but were unable to find support to attend
the Swaziland meeting will not be left out of the PATA process. They will also be able
to elect tasks to complete in the year between the third and fourth meeting and will be
mentored through that process in the same manner as teams that had attended.
Conference faculty
An experienced faculty made up of nurses, pharmacists, counsellors and paediatricians
was invited to provide technical input during plenary sessions and in master classes (see
below); and to facilitate participative workshops.
The conference faculty was made up of representatives from CHIVA, St Mary’s Hospital
London, UNICEF, the Clinton Foundation, Partners in Health, the Red Cross War Memorial Children’s Hospital and the School of Child and Adolescent Health and the Department of Child and Adolescent Psychiatry (University of Cape Town) the University
of the Witwatersrand, Groote Schuur Hospital, Baylor (Swaziland), Grassroots Soccer,
MRC Uganda, Kenyatta National Hospital, ANNECA, the Zimbabwe Swiss AIDS Care
Foundation, Harare, the University of Cardiff, Wales and the Albert Einstein College of
Medicine, New York.
The Adolescent discussion stream was organised and managed by Shelly Horwitz. Ben
Marais managed the TB/HIV discussion stream. Stephen Rollnick and Jenny Altschuler
planned and managed Day 3 discussion and process.
A full list of participants and faculty forms Appendix I of this document.
PATA
PROCEEDINGS 2007
2
Table 1: A schema of the conference process
Funding
The conference was funded by a consortium of donors, convened by the One to One
Children’s Fund. Supporters included Synchronicity, Aurum, Miracle Corners of the
World, Sidaction, UNICEF (Dr Chewe Luo and Robert Gass), the ELMA Philanthropies
and the Kidzpositive Family Fund.
Process
As with the first two PATA meetings, this third treatment team forum was designed to
provide all team members and professional groups with equal opportunities to contribute
their views and experience as individuals; and also to reflect on their performance as
members of a health care delivery team. The following features of the conference were
designed to promote the vision of teamwork with equality:
I. A series of parallel workshops was presented in which participants first
collaborated to complete a given task as members of their specific professions and then completed a second and related task as members of their ‘home team’. Workshops were so arranged in order to provide all professions represented in the teams with an opportunity to express their own views and to develop a
‘strengthened voice’ prior to rejoining their home team for completion of the follow-up task. The assumption underlying this design was that traditionally, the voices of some professionals in the health care team are muted and overpowered by those of others.
II. Daily editions of ‘L’Equipe PATA’ were published. This is a conference
newsletter carrying reports on highlights of the previous day’s events, photo
graphs and interviews with speakers and visitors to Nairobi. This newsletter is available on the PATA website (www.teampata.org).
III. A welcoming dinner with singing and dancing in company.
IV. A candle lighting event on the eve of World AIDS Day 2007.
V. Emphasis – throughout the conference - on teamwork as essential to the goals of PATA and to the success of the ‘PATA effect’.
Opportunities to improve clinical practice were discussed under the general headings of
Day1: Monitoring and Evaluation of Progress (How is PATA doing, what has
gone well in our teams and what were the main challenges we faced in our
teams this year?)
Day2: TB/HIV and managing Adolescents with HIV
Day3: Setting realistic goals and tasks for the year ahead
3
Date
Topic
Session I:
8-10am
Session II:
10.30 –
11.30am
Session III: Session IV: Session V:
12.30 –
1.30–
3.30–
1.30pm
3.00pm
5.00pm
28/11 Monitoring Plenary
and
Evaluation
IntraIntraIntraPlenary
disciplinary disciplinary disciplinary feedback
workshop feedback
workshop
29/11 TB/HIV
Plenary
and Care
of the
Adolescent
Plenary
IntraIntraIntradisciplinary disciplinary disciplinary feedback
workshop feedback
workshop
30/11 Planning
for next
year
IntraIntraIntraPlenary
disciplinary disciplinary disciplinary feedback
workshop feedback
workshop
Plenary
Members of the conference faculty introduced topics on each day through an early
morning plenary session and presented challenges and technical information to participants to fuel action-orientated discussion in the workshops and to provide ideas with
which to address the workshop question.
At the end of the plenary session (session I), specific tasks were set as questions to be
answered during the initial set of intra-disciplinary workshops (session II) by workers
from the same discipline. During this first workshop session each group of 42 pharmacists, nurses, counsellors and clinicians met in separate venues in their individual
disciplines - in groups of 6 - to discuss their answer to the day’s first question. Discussion in groups was facilitated by members of the PATA faculty.
This workshop session was followed by a set of four parallel intra-disciplinary (mini –
plenary feedback plenary sessions (session III). All 42 participants from each profession
met during these sessions so that participants in all the groups of six could be informed
of discussions in all the workshop groups and could receive information not considered
in their own workshop groups. This ‘mini-plenary’ had the purpose of supplying each
participant with all the information available to the professional group and to enable
individual participants to present such information to their ‘home teams’ as input for
discussion in the second (session IV) workshop.
In the session IV workshops, members of all four disciplines re-convened in their
original ‘home teams’ of 4. Each team’s representative from each of the four professions
could be expected to present information from the prior intra-disciplinary workshop and
plenary to his/her team. In this way the team was able to discuss each discipline’s contri-
PATA
PROCEEDINGS 2007
4
bution and to debate its own response to the second question or discussion topic.
At the end-of-day feedback plenary, a representative from each of the treatment teams
presented the team’s conclusions to a plenary meeting of participants and faculty (session V). An ‘open microphone’ period was introduced, so that individual participants
could take the floor to communicate additional information.
The conference procedures and programme were explained via e-mail well in advance of
the conference. Facilitators were briefed at a preliminary session on the evening of the
27th November, before the official welcome and opening dinner.
As an innovation, a PATA ‘Marketplace’ was presented on the final morning, to give
participating teams an opportunity to showcase their special projects.
This was a participative action-oriented conference, aiming both to support and to
challenge practitioners in improving the quality of care and treatment of families with
children with HIV. The meeting is seen as the first part of the annual PATA process.
The second and more important part of the PATA process commences after the meeting, when teams start working on the tasks they have elected to complete in the year
between conferences.
Master classes
‘Master classes’ were a new feature at the second PATA meeting, introduced in order
to meet a request for technical input. Master classes were continued for this third PATA
forum. A team of experts, consisting of Helena Rabie, James Nuttall and Ben Marais
presented TB/HIV Masterclasses and a team consisting of Shelly Horwitz, Lisa Karp,
Desiree Michaels, Renee Nassen and Donna Futterman presented Adolescent Care Masterclasses between 5 and 7 pm on November 28th and 29th.
This section was designed to get participants to think about how they would go about
measuring the efficacy and efficiency with which their clinic and team works. On Day 1
therefore, professions and teams were invited to consider the successes and challenges
they faced during the previous year, and to consider what outcomes they would measure
as the optimal indicators of best practice or failure of performance.
The clinic is a multi-disciplinary platform for work. Quality of care is everyone’s concern. The matter requires discussion and reflection with equal opportunity for input from
clinicians, counsellors, pharmacists and nurses.
Plenary and workshops focused on a description of obstacles to care delivery and
possible solutions and were designed to provide technical input aimed to help teams
think about using outcomes information to improve clinic performance.
TB/HIV
TB/HIV in children was considered to be an important topic for master classes, plenary
input and clinic task selection for the following reasons
•
•
•
•
•
•
•
Tuberculosis is common amongst children with HIV/AIDS
TB/HIV/AIDS presents diagnostic difficulties
There are specific difficulties in radiographic diagnosis in TB/HIV
Prophylaxis against tuberculosis in HIV-positive children is not a settled issue
Anti-retroviral therapy regimens in children on anti-tuberculosis therapy present problems
Tuberculosis disease as a result of immune reconstitution presents clinical
difficulties
BCG vaccination can be hazardous to children who are HIV-positive
Topics for conference days
A team of experts was assembled to provide forum participants with information and
concepts for discussion in workshops
These topics were chosen and ordered in a particular way for the following reasons:
Care of the Adolescent
Monitoring and Evaluation
Care of the adolescent was chosen as a headline topic for the 2007 forum for the following reasons:
Teams are required to assess the appropriateness of the tasks they elect to complete
during the PATA year and to measure their progress in completing these tasks. Team
members need to choose the correct process- and outcome indicators with which to
assess their performance. Anti-retroviral roll-out successes and quality of care turns on
each team member’s awareness of selected goals.
5
PATA
•
•
•
Clinics will be facing a growing population of children making the transition to adolescence
Clinics will encounter adolescents presenting with illness
Clinics will be required to have policies, strategies, SOPs to deal with adolescents testing positive at VCT
PROCEEDINGS 2007
6
• Clinics may be requested to support awareness projects and to provide peer group educator training
• Adolescents in Sub-Saharan Africa are dealing with a range of issues described in
cohort studies
• Certain of these issues in this range will have a severe impact on adolescents from HIV/AIDS affected families
A team of experts was assembled to provide forum participants with information and
concepts for discussion in workshops.
Planning for the next year
On the final day of the conference, participants were presented with input describing
flexible communication styles and shown how these could be implemented in the course
of a ‘round table’ discussion between experts in the field of psychosocial support.
Workshop questions encouraged the teams to elect projects that extend traditional health
care and expand traditional comprehensive care. They were invited to develop a work
programme for the clinic, by selecting tasks to be completed within 3, 6 and 12 months
from the conference.
Opening Dinner
The conference began with a Gala Dinner on the evening of 27th November. The following welcoming address was given by the Honourable Mr. Njabulo Mabuza, Minister of
Health for Swaziland. He was introduced by Ms Busi Bhembe (Baylor Swaziland).
‘Ladies and gentlemen, honoured guests, the 43 treatment teams from 22 Sub-Saharan
Countries attending this third PATA Forum, it is my privilege to address you this evening
and to welcome you to the Kingdom of Swaziland.
It is good to know that so many expert health care workers are gathered here for this
very important work. Our part of the world – and here I refer to the whole of Africa – is
severely affected by this HIV and Aids epidemic. You will know better than I how our
children are suffering. You will know as well as I do, how heavy the burden is for the
people in our communities.
Last year, your conference in Nairobi, Kenya, you heard that children made up 13 per
cent (540,000 of 4.1 million) of new global HIV/AIDS infections during 2005; that they
account for 14 per cent (380,000 of 2.8 million) of HIV/AIDS deaths annually and that
they represent 6 per cent (2.3 million of 38.6 million) of the persons living with HIV
today. Ninety per cent of these children with HIV live in Africa.
7
PATA
Children are most vulnerable to the HIV/AIDS epidemic. Whereas 18% of all deaths
occur in children, only 4% of all of patients so far on treatment are children. Often,
health care in Africa arrives too late: The majority of children receiving medical care are
over 18 months old – when about 40% of children infected by HIV at birth will already
be dead. Because many entering treatment are already at an advanced stage of disease,
mortality is high. This means that it is essential that children gain earlier access to appropriate care.
Only improved access to care and better follow-up and support will change matters on
our continent. We know that antiretroviral therapy is effective in children when it is accessible and properly managed, but as is all too often the case, there are many obstacles
to access and to proper management.
When a Health Ministry is faced with a task as enormous as this epidemic, resources are
certain to be insufficient. This makes every contribution to our efforts vitally important.
The sponsors and organisers of this meeting are providing invaluable assistance to our
efforts. By presenting you, our continent’s health care workers, with an opportunity to
interact, share and plan around the care they deliver to their patients, they are doing
something valuable, admirable and rare.
When you as health care workers are stretched to the limit, it becomes vital that each
task you perform is done as well as it can be. Your PATA conference seems to present an
opportunity for you to reflect your current performance. Amongst yourselves, you will
have a chance to work out how to do your work even better than before. I applaud your
dedication and I wish you courage, energy and clear minds for the days ahead.
I understand that PATA is an agent for change and that your organisation has supported
and taken on good ideas to relieve the pressure on front line heath care workers. I was
very interested to hear of the ‘expert patient’ idea as a way of addressing the chronic human resources problem in paediatric treatment clinics.
I know that our Swaziland Baylor centres of excellence, through the Bristol-Myers Secure the Future project, are assisting in the presentation of this forum, and I am sure they
will be excellent hosts and a powerful source of help to you.
I understand that you are concentrating your efforts this week on the issues of Tuberculosis in children with HIV/AIDS. This is clearly a matter of great importance to your
practice. It is good to know that you are certain to learn much from the experts gathered
to assist you.
It is a sign of success that children on anti-retroviral therapy are growing up to be
healthy and that many of them are entering adolescence. Both the youth, and you, their
health care providers will be faced with new challenges. I trust that the team of experts
PROCEEDINGS 2007
8
that has been gathered here will help you uncover great stores of wisdom.
PATA aims to assist in reaching this goal through the ‘PATA effect’.
I wish you courage and foresight as you select your tasks for the year ahead.
Central to the PATA effort is the following set of values:
• Integrity
• Commitment to the Vision
• Professionalism
• Compassion
• Teamwork
It is now my pleasure to declare this meeting open.’
The Honourable Minister was followed by Dr Joia Mukherjee, Medical Director of Partners in Health, from the Program in Infectious Disease and Social Change, Department
of Social Medicine, Harvard Medical School.
Dr Mukherjee gave a talk entitled ‘Raising the Bar: Case Detection and Treatment of
Children with HIV and TB’. She encouraged participants to use the opportunity of this
PATA forum to renew their passion for the care of children.
According to a request for data from 20 clinics in the PATA network, the number of children on ARVs has risen from 14 382 in November 2006 to 18 802 in November 2007.
Table 2 indicates increases in children on ARVs in selected clinics:
Day 1 Plenary Session
Table 2: Access to ARVs 2006-2007
Day 1 of the third PATA Forum was dedicated to a review of progress and a presentation
on monitoring, evaluation and quality assurance. Two major initiatives were presented to
the meeting respectively as examples of PATA-wide and local projects.
Presentation 1 The Journey to PATA 2007 – David Altschuler
Representation out of francophone West Africa has grown. Ghana is represented in
Swaziland for the first time.
PATA’s mission is now understood as:
• Facilitation of expanded access to care for children with HIV
• Development of medical and psychosocial models of care
• Facilitation of high quality, integrated, patient-centred & affordable services.
07-Nov
170
229
255
Mbeya Tanzania
321
387
Connaught Zimbabwe
218
341
Worcester South Africa
200
PIH Rwanda
KNH Kenya
Since its inception in Cape Town in 2005 attendance at the annual PATA forum has
grown from 23 treatment teams from 10 countries; to 30 treatment teams from 18 countries at PATA Nairobi in 2006 and 42 treatment teams from 19 countries attending PATA
Swaziland in 2007.
06-Nov
Chantal Biya Cameroon
Baylor Swaziland
338
225
353
501
498
280
In the past year, PATA has also consolidated a management infrastructure and in the
form of a steering committee and a full time project manager. Communication has been
established with the regular publication of a bi-monthly newsletter and updates on the
Web site at www.teampata.org. Only the regional mentorship programme requires further development before it can be adequately functional.
For the future, the network is considering appointment of a sports director, regional coordinators and regional social entrepreneurs.
PATA follows a strategy of facilitating the development of local capacity and encouragement of self-initiated projects through teamwork and a multi-disciplinary team approach.
The network supports learning through team work, sharing of experiences, and spread of
good practice.
The expert patient programme has taken root in 18 clinics, where 72 expert patients have
been employed to carry out tasks such as nutrition education, management of child play
areas, peer group counselling, patient education, adherence monitoring with community
visits, facilitation of clinic flow, and the running of support groups.
PATA would like to assist in the goal of achieving access for all HIV-infected and affected children in Africa to comprehensive, high quality health services including ART.
The PATA vision for the 2008 ‘Expert Patient’ programme entails the employment of up
to 160 expert patients in 40 clinics.
9
PROCEEDINGS 2007
PATA
10
Vignettes illustrating the ‘Expert Patient’ project:
Zoleka (a pseudonym) is a young single mother. She tested positive in 2004 when she
was pregnant with her only daughter. She had PMTCT, receiving Nevirapine, and now
has a beautiful, healthy 2 year old daughter who is HIV negative!
After her baby was born, Zoleka came to the Hamburg Clinic because she had heard
rumours that there were people in Hamburg who helped HIV positive people. At that
point she had a CD4 count of 99 and she was starting to get ill. Zoleka came to the
treatment centre and has been on ARVs since February 2007. By May her CD4 count
was up to 474.
Keiskamma Trust recognized that Zoleka is a bright woman with a lot of potential, and
desperately needed employment. PATA was offering funding to employ three expert
patients and Zoleka was chosen as one of them. She is the only person in her family of
six who is currently employed.
Zoleka has been a monitor for about three months, and is currently monitoring four
patients, one of whom is on ARVs. Her patients live quite far apart, and she has to rely
on public transport to get to some of them. She enjoys educating and supporting each of
her patients, and is finding the job very satisfying.
She is healthy and happy and feeling good about herself.
Nongamso found out that she had HIV in 2004 when she was pregnant with Thubalithle.
Despite PMTCT (Nevirapine), her child Thubalithle (affectionately nicknamed ‘Teaspoon’ for her size as a baby) is also infected. Nongamso heard about Umtha Welanga
from her local ward councilor through a local art project, and was able to connect with
Carol, Eunice and Graeme at the Craft Centre.
Nongamso and Teaspoon lived at the treatment centre for about a year, and while both
were quite sick, they are now both doing very well. Teaspoon started walking just on the
cusp of her 3rd birthday, and now, just a few months later, she is walking, running, skipping and playing. Because she started ARVS very late - there was no ARV programme in
the district - she has chronic lung disease, but otherwise she is doing very well thanks to
Nongamso's dedication to her and her treatment.
requiring treatment. She is the person responsible for physically administering the
treatment to the children and both are doing very well.
Nongamso is happy to be back home, and is raising her daughter and her 11year old
sister, Asisipo. Having a source of income has made a difference for their quality of life
Kick AIDS out of Africa is a One to One project. The thoughts behind this idea are:
• Africa loves football
• HIV+ children also need to play
• Sport events offer an ideal opportunity for HIV/AIDS education, testing and
counselling
• PATA clinics can link testing events to treatment programmes
• ‘Normal’ activity breaks down stigma & promotes disclosure
The Kick AIDS concept therefore links football to HIV education; education to testing
and testing to treatment when required
One to One’s first Kick AIDS project was been set up in the grounds of Dora Nginza
Hospital, Port Elizabeth, in partnership with Grass Roots Soccer. The project sees 180
children playing in a weekly league through which they also receive AIDS education.
There is access to HIV testing and counselling for all players and access to life-saving
ARV treatment for all HIV+ cases, at local PATA- affiliated clinics. One to One sees an
opportunity to replicate this project at more than 60 clinics in the PATA network across
Africa.
The One to One vision is to sponsor testing events linked with PATA-affiliated clinics
across Africa, in partnership with Grass Roots Soccer and other affiliates of World Street
Football. PATA clinics will offer access to testing, counselling and where necessary,
ARV treatment and ongoing medical and psychosocial support.
Communities will be harnessed by local sports facilitators who will develop peer-group
support systems and maintain links with PATA clinics.
The ultimate goal is to test 50,000 young people by the end of 2010 and save thousands
of lives.
Nongamso and Teaspoon went home in August 2007 and Nongamso became a monitor
with PATA funding. She is currently monitoring three children and two adults, all within
a short walking distance from her home. Her main focus with the adults is education
and support -- something that she is passionate about. Two of the children that she monitors are on treatment, including Teaspoon, and the third child is still healthy and not yet
11
PATA
PROCEEDINGS 2007
12
Presentation 2 Performance Measurement Quality Improvement and
comprehensive Care Delivery - Robert Gass. UNICEF. Presented on his
behalf by Paul Roux.
Over the past couple of years there has been a considerable amount of work on paediatric HIV care, including:
a. The development of clinical HIV guidelines specific to children by WHO and other organizations including ANECCA;
b. Numerous studies have shown the effectiveness of ART in children both in
developed and developing settings;
c. Comprehensive packages of care have been defined by national governments;
d. Experience in our clinics where we treat children has also shown us that when we do what we should, the results are nothing less than amazing.
But …. do we know if “we” (at the more macro level), are actually doing what we
should be doing for HIV-exposed and infected children? We know that HIV-infected
children progress to morbidity and mortality much more quickly than adults, but are
we ensuring that all HIV-exposed children are routinely tested at 6 weeks or as soon
thereafter as possible to determine whether they are infected and should be referred to
ART? We know the effectiveness of co-trimoxazole prophylaxis, but what proportion
of HIV-exposed and infected children are receiving this essential intervention?
We also know that treatment of children living with HIV isn’t always easy – particularly
for those who have not had prior experience in treating patients with HIV, or those with
limited experience in taking care of children.
So in summary, what are some of the reasons behind our interest in performance measurement and quality improvement?
a. The magnitude of the HIV epidemic and the complexity of treatment make
focusing on quality of HIV/AIDS care essential.
b. An emphasis on quality of care during scale-up is particularly important to
permit implementation of guidelines and build effective systems of care.
c. Aggregated performance data can be used for monitoring and evaluation at
facility, provincial and national levels to inform policy and planning.
This is a definition of Quality Health Care provided by the Institute of Medicine in their
landmark study looking at the quality of health care and published in 1998:
“Quality health care is associated with routinely providing those essential health services
such as immunization, growth monitoring, etc., or routine immunological monitoring
and adherence assessment for infected children and adolescents, that have been associated with an increased likelihood of improved outcomes, and which are also consistent
with what we have read in professional clinical literature and have experienced as
practitioners.”
13
PATA
What distinguishes Quality Improvement from more traditional Monitoring and Evaluation exercises?
Firstly, the use of real-time data to improve care:
If we want to improve a current situation, we need to have data from what is happening now and not from 2 years ago. Often, when data are used, they are very old and
with the very rapid evolution of many HIV care and treatment programmes, these
data are less than useful for improving current HIV care delivery.
Secondly, it allows us to assess how care is being provided, rather than just counting the
number of patients that receive a particular intervention:
For example, it is more useful from the perspective of a hospital director to know
what proportion of his or her patients received specific essential interventions such
as TB screening, immunizations, CD4 monitoring, etc., rather than just knowing that
in the country overall 50,000 new patients were placed on treatment.
Thirdly, quality improvement (QI) methods allow us to look at systems of care rather
than just how individual practitioners perform:
Most of us are in this profession because we are interested in doing the right thing
for our patients. Often we work very long hours to achieve this. So when patients
are systematically not receiving essential interventions, it is more likely related to
systemic issues (e.g. lack of provider education, inefficient systems in the clinic,
lack of documentation that prompts a provider to provide a routine service, etc.) QI
allows for an analysis of systems so that they can be improved, thereby benefiting all
patients in the clinic.
QI provides an opportunity to learn about what has worked from our peers and also to
share our positive experiences. This is a fundamental aspect of QI which is often not
integrated into more traditional M&E systems.
Through measuring performance at our clinics and analyzing results, we can help improve the quality of care provided to our patients, by:
1.Improving survival through providing ART to patients who need it.
2.Reducing morbidity by providing HIV-exposed and infected children with
co-trimoxazole, vaccinations, etc.
3.Improving quality of life through counselling and psychosocial support.
4.Prevent emergence of drug resistance through adherence assessments and
education on methods to improve adherence.
5.Reduce further transmission by identifying those who are infected so that they
can prevent transmission to their infants and/or other partners.
PROCEEDINGS 2007
14
• Performance data is useful in establishing a baseline level of performance so that we know where we are starting from
What are some of the key outcomes we want to achieve through implementation of
performance measurement and quality improvement?
1.We want to improve identification of children and young people who are eligible for treatment through appropriate screening and testing of HIV-exposed and/or sick children who might be exposed.
2.We want to ensure that those children who are eligible for treatment receive it and receive it in a timely manner.
3.We want to ensure that our patients are retained in care and are not lost to follow up. To do this we need to have mechanisms to identify those patients that have not returned for routine care and ensure that they are receiving the care they need at our particular clinic or somewhere else.
Performance Measurement and Quality Improvement are interlinked:
a.Performance measurement is needed to determine a baseline and separate out what is really happening from what you think is happening.
b.Quality improvement should focus on those areas where improvement is most warranted and where it impacts the largest proportion of patients.
c.Performance measurement is then needed to determine whether interventions selected and implemented to improve care have had their desired impact.
For performance measurement and quality improvement to be sustainable, however, they
need to be rooted in infrastructure – someone needs to have ownership over the process
to ensure data are collected, analyzed and used in a timely manner. This could include
designation of a national performance improvement coordinator within the Ministry of
Health, or incorporation of QI participation in personnel job descriptions.
At clinic level the importance of QI requires that the whole team should have ownership
of the M+E enterprise, that M+E infrastructure is a priority and that the data capturer
is valued as a V.I.P.
Performance measurement needs to follow a standardized approach:
• It is important to have a few, select core indicators that are based on national guidelines and which can be applied at all sites. An example could be that all patients living with HIV benefit from a CD4 count every 6 months or whatever is recommended
in the national guidelines
• It is not necessary to collect data from all patients – in fact we want to avoid that as
it creates significant burden on healthcare facilities and does not yield a lot of extra
useful information. We want to collect data from just enough records so that we are
confident in our analysis
15
PATA
• Performance data can help us identify what our QI needs are and guide us in
defining our improvement priorities and strategies
• Finally, performance measurement is essential in monitoring progress over time
– to ensure that we continue to move in the right direction and that we don’t slip
backwards once improvements have been made
A useful indicator can be recognized by the following characteristics
• It should have a clear numerator and denominator
• It should be able to distinguish between process and outcome
• It must represent an essential element of services
• It must assess a process that can be improved
Good performance indicators have the following characteristics in common:
1.
2.
3.
4.
5.
6.
They reflect national guidelines.
They are measurable; with a clear numerator and denominator (i.e. you can clearly identify who would constitute a “yes” and who a “no” in the process of counting. For example, the proportion of HIV-infected patients seen at the clinic within the last year who were screened for TB. The denominator is all HIV-infected patients seen
at the clinic within the last year and the number of those that were screened for TB would make up the numerator.
They are either process or outcome measures. Process measures are those that measure whether an essential service was performed (such as TB screening) within the specified period of time. Outcomes may reflect the decrease in mortality among HIV-infected patients at the clinic over the past 12 months.
They represent essential services for a large number of patients. We don’t want to use a lot of time measuring the quality of services that impact only a very small
number of patients. It’s better to focus on those services that are essential for a large number of patients in the clinic.
Related to #4 above, we want to measure services that should be provided to the majority of persons in a particular target group. For example, all HIV-infected
patients should ideally receive CD4 testing routinely.
We want to measure those things that we can do something about. For example, if
we find that patients are not being screened routinely for TB (e.g. questions about cough, night sweats, appetite, etc.), this is something that can be easily implemented. However, if there is no capacity for viral load testing in the country, there isn’t much PROCEEDINGS 2007
16
7.
point in measuring what proportion of patients is receiving this service as there isn’t anything that can be done about it.
Finally, we want only to measure a small number of indicators that are representative of overall care within that area. We need to balance the amount of information we collect with the burden we impose on those collecting the data.
24%
24%
97.2
77.9
67.1
64.6
5%
G
F
68%
E
19%
D
C
32%
18%
B
24%
A
33%
0%
20%
40%
60%
80%
100%
What is QI?
As mentioned earlier, QI focuses on improving systems of health care delivery not just
looking at deficiencies.
In addition, QI involves specific methods:
1.QI projects are based on and utilize reliable performance data
2.QI methods are designed to minimize variation in the delivery of healthcare services. We want to ensure that all patients receive the same services in the same way – receipt of services should not be dependent on who is in charge of providing them.
3.QI involves the healthcare team in designing and implementing changes, rather than just an administrator or national manager. Those closest to the provision
of services are best equipped to understand how services are currently being
provided and how the system can be improved so that a larger proportion of patients receive the services they should.
4.QI will focus on improving processes of health care that have a direct correlation in improving desired health outcomes. For example routine TB screening will help identify TB disease earlier, thereby reducing the possibility of spread to
others and improving treatment outcomes.
5.QI methods help support the implementation of national guidelines and
accreditation standards. If guidelines indicate that all HIV-exposed infants should receive a test for HIV at 6 weeks, measurement and subsequent QI will help ensure that goal.
Figure 1: Longitudinal trends:
95.4
42%
H
Data can be used to assess performance in the following ways:
1. Identify areas in need of strengthening at clinic, district or national levels.
2. At clinic level, identify internal factors that contribute to organizational performance – what helps ensure that patients receive the services they should and what prevents them from receiving those essential services.
3. Measure trends in provision of essential services over time – is progress being made? This can be done at facility level, district level or national level.
1998, N = 1486
1999, N = 1820
2000, N = 1735
2001, N = 1336
2002, N = 2140
HAART, CD4 <350 or Viral Load >=10 000
4. Benchmarking – Compare how different facilities perform in providing a specific
17
Median
I
• Annual TB screening
– Numerator: number of HIV-infected patients screened in calendar year
– Denominator: number of HIV-infected patients seen at least twice during
the calendar year
• Bactrim prophylaxis
– Numerator: number of children requiring Bactrim prophylaxis
– Denominator: Number of HIV-positive children identified as
receiving Bactrim
Figure 2:
J
Examples of useful indicators are:
100
90
80
70
60
50
40
30
20
10
0
Benchmarking: Comparing an indicator across clinics
service.
PATA
PROCEEDINGS 2007
18
The ‘Model for Improvement’ is just one way that QI can be systematically implemented:
• Prioritize area for improvement based on performance data
• Plan - Choose changes to test
• Do – implement this on a very small scale for a short period of time – perhaps a week, to see how it works
• Study – Re-measure the results from the pilot to see if the intervention made a
significant difference. If it didn’t, try another strategy and don’t waste more time on the one that didn’t work
• Integrate improvements into daily work, share strategies and best practices (diffusion; spread; adoption)
Figure 3: The Model for Improvement
What are we trying to accomplish?
What change can we make that will
result in an improvement?
Study
HIVQUAL can be implemented at scale relatively quickly as can be seen from this slide.
The initiative expanded from 12 pilot sites in 2004 to 142 sites by the end of 2005.
Thailand chose four key indicators to measure for quality of health care delivery to HIVinfected children.
• HIV status monitoring
• OI prophylaxis
• ART for children eligible for treatment
• TB screening
They also identified other optional indicator areas:
• Viral load monitoring
• MAC prophylaxis
• CMV retinitis screening
• Immunization
• Growth and development
• Dental health
• Psychosocial issues
How will we know that a change is
an improvement?
Act
– Identify the top three interventions you would test according to the model
for improvement.
Let’s take an example where HIVQUAL International has been implemented in Thailand
- to improve paediatric HIV care and treatment in children.
Plan
Figure 4: HIV QUAL in Thailand
Do
100
90
The Model for Improvement
70
When implementing QI projects, consider the following:
A workshop task for your clinic team or for teams in your region could be:
80
86
94
91
56
50
38
40
30
20
10
0
• Describe interventions or system changes that could be introduced to improve semiannual TB screening in HIV-infected children.
PATA
95
59
60
1. Focus on selected aspects of ambulatory care – those that are in most need of improvement and will benefit the largest number of patients - don’t try to focus on improving everything at once.
2. Organize regional workshops to share best practices, barriers, and successes of QI projects so that different clinics can learn from each other.
19
84
80
95
PROCEEDINGS 2007
24
0
CD4 Testing
ARV Treatment
TB Screening
2002 = 12 hospitals n = 546
2004 = 63 hospitals n = 790
2003 = 42 hospitals n = 670
2005 = 63 hospitals n = 842
20
The results for each of the three areas measured increased significantly from 2002 to
2005 (these data include both adults and children):
•CD4 testing being performed routinely and on time rose from 24% of patients receiving a CD4 test every 6 months to 95% of patients.
•ARV treatment for eligible patients remained high throughout.
•For TB screening, the results were also impressive, increasing from 0% having TB screening documented annually to over 94% three years later.
One clinic, based on data collected decided they needed to improve their immunization
assessment. Following data collection, the QI Committee initiated the following set of
activities:
1. Report and paediatric HIVQUAL data to all paediatric HIV staff at a routine
meeting, and explained the intention to work on improving this area.
2. Health providers were provided with guidelines regarding immunization indicating when specific immunizations were due for HIV+ kids.
3. Health care providers began asking all parents to bring the vaccination book with them to every clinic visit so that they could ensure the child was up to date with his or her immunizations.
4. An immunization variable was added to the medical record form so that health
care providers could quickly see if the patient was up to date with his or her
immunizations.
In summary performance measurement and quality improvement lends itself to several
advantages:
• Improves the quality of clinical services
• Builds capacity for measuring care and QI among healthcare workers
• Strengthens HIV QI infrastructure and documentation systems in HIV clinics
• Monitors implementation of national guidelines through benchmarking reports
• Identifies national priorities for policy and planning
21
At work:
Images from the
Pata Swaziland
Conference 2007
PATA
1
PROCEEDINGS 2007
22
23
PATA
PROCEEDINGS 2007
24
Presentation 3 Implementation of an Expert Patient program in
Rwanda. Sara Stulac. Partners in Health
Partners in Health (PIH) has been in collaboration with the Rwandan Ministry of Health
since 2005. Together, they have introduced a comprehensive, integrated HIV, TB, and
primary care service in two rural health districts, serving a total of 450,000 people.
PIH programmes are delivered by a team of doctors, nurses, social workers, and accompagnateurs (community health workers). The Accompagnateur program was first
introduced in Haiti in the 1980s and is well established.
Accompagnateurs carry out the following tasks:
•Observe and record daily pill ingestion (DOT) at patient’s home
•Attend monthly clinic visits with patients
•Provide moral and social support; and liaison with clinic staff
The care package for children on ARVs consists of:
• Daily home-based DOT by accompagnateurs
• Monthly clinic visits, with accompagnateurs
• Monthly food package
• Group counseling for children and parents
• Home visits to assess and address social needs
• Assistance with school materials and fees if needed
Team tasks set at the 2006 PATA conference were the following:
•Team work to identify program needs
•Goals set to accomplish in 2007
•Expert Patient program introduced
•Brainstorming with team, during and after conference
–Where is our program weak; what needs are not addressed?
–Where are staff overworked?
–What tasks could be done by a community member without advanced
medical training?
The following needs were identified :
Pediatric HIV program
• A more child-friendly clinic visit experience with play groups for children
• Better clinic flow and decreased workload for nurses
25
PATA
PROCEEDINGS 2007
26
4. Community follow up of HIV-exposed infants
– Mother with an infant who had graduated PMTCT program
– Leader of « sages femmes » (local traditional birth attendants)
– Tasks
– Home visits
– Training moms on formula preparation
– Support for stigma and other social issues
– Accompany women to clinic visits and formula distribution days
– Supervise other community health workers doing home visits and community follow up
PMTCT; program for HIV-exposed infants
•Hospital-based support for newborn feeding
•Community-based follow up for infant feeding, hygiene, and social support
Implementation of the ‘Expert Patient’ programme was as follows:
• Logistics
– Selection: recommendations from social workers
• Patients most needing work, and with appropriate skills
– Training and supervision
• Challenge of adding work for busy staff
–Most training was informal and on-the-job
• Report forms created for community-based work
The expert patient programme implementation faced a number of challenges :
The following tasks were selected for ‘Expert Patients’
1. Playroom activity leader:
– Mother of a child in ART program
– Chosen because observed in counseling groups to be dynamic and to enjoy
playing with children
Tasks:
1.Organizes play activities on ARV group consult days.
2.Occupies young children of mothers at monthly counseling/support groups.
3.Plans activities for range of ages, infant to adolescent.
4.Keeps toys and art supplies in order.
2. Clinic assistant
– Requires literacy, good rapport with children
– Mother of a child in ART program
– Tasks:
• Weights and heights
• Organize charts
• Help find lab results, etc
In spite of strong established community-based care relying heavily on CHWs, Expert
Patients fill important unmet needs, with benefits to programs and patients.
3. ‘Milk mom’: (health centre-based feeding support for HIV-exposed infants)
– Local community member who is on call to maternity ward any time an HIV+ woman delivers
– Requires basic literacy, good interaction with and respected by mothers
– Tasks
– Demonstrates and teaches mother to prepare milk and bottle-feed infant over first 2 days of life on maternity ward
– Ensures mother is comfortable with preparation and feeding before hospital discharge
– Manages stock of formula and supplies
27
• Recruitment
– Difficult choices with many patients in need of work
– Finding specific skills including literacy
• Training and supervision
– Staff already overextended
• Integrating into existing accompagnateur structure
– Supervision
– Ensuring equity in payment and work
• Re-assessment of needs
– Some health centres had few hospital deliveries, so ‘milk moms’ focus switched to community: home visits and case-finding
– In some cases initial training was inadequate; more supervision and training required
• Monitoring
– Improved supervision and follow up needed
– No formal assessment of EP effectiveness in place
PATA
Presentation 4 Rwinkwavu Service. Alice Nyirimana. Partners in
Health (originally presented in French)
This service cares for 536 children living with HIV/AIDS at 6 sites operated by PIH.
These children benefit from several different elements of care :
• A PMTCT programme
o A subsidiary programme providing milk formula
• A paediatric counseling programme
• A home visit programme
PROCEEDINGS 2007
28
In Rwandan culture, it is bad practice to give infants exclusive milk formula feeds. The
major tasks for counsellors are therefore:
•Provision of moral and psychological support
•Helping infected and affected persons to reintegrate with society
•Help in finding solutions to the financial problems that affect a suffering and extremely impoverished society.
Consequences for the family
• Loss of attention to own children and partner
• Feeling that counsellor parent does not care about them
The objectives of the home visit programme are:
•To understand the socio-economic situation at home and its impact on the child’s development
•To assist the economically disadvantaged to reintegrate with society
•To ensure adherence to medication
•To respond to socioeconomic and clinical problems that are identified (such as lack of shelter, malnutrition, clothing or access to schooling)
Consequences in professional life
• Professional limits
o Favouritism for those most affected creates jealousy amongst children
o Offering inappropriate solutions
• Adopting children themselves
• Giving gifts rather than responding to problems
• Loss of interest at work
o Becoming inactive
o Looking for more pleasant work
o Loss of concentration at work
o Becoming pessimistic, not seeing own imperfections and blaming things on
everyone else
The counselling programme provides different elements for each group of children.
Counselling for children includes games, songs and plays. Discussions are encouraged
on several themes, including:
•Why do we take the medicines?
•How do we deal with stigmatization?
•How do we sustain adherence?
We try to help the children express and address their problems.
•Problems that orphans have who lack power to deal with people who try to steal the assets of their families
•Assisting integration of orphans into families that lack knowledge of HIV/AIDS
•Poverty
•Stigmatisation (at school and in the family situation)
Counsellors attempt to address all problems and to seek solutions, through individual
counselling, by affectionate engagement, through home visits and counselling parents,
relatives and friends, in order to assist children to find their place in the family.
The counsellor carries a heavy load and must be supported in his or her professional and
private life.
Consequences for the counsellor’s private life include
•Sadness and discomfort
•Stigmatisation
• A sense of powerlessness
• Insomnia, fatigue, bad temperedness, loss of interest in life, lack of concentration
29
Consequences for relationships
• A lack of interest in socializing with friends
A case report :
•A sixteen year-old, orphaned, having lost both mother and father
•Started ARVs on 16 May 2006
•During first counselling session was aggressive, anxious, worried about physical
effects of opportunistic infections on the body and fear of discrimination by
others who are healthy.
•Conflict with relatives who wanted to steal his inheritance
•Lack of appropriate family interest - on father’s side
•Little interest in life
•Left school
The response to this problem included:
• To provide him with a place of safety, to respond to his socio-economic needs
and access to school accommodation
• To provide shelter during school holidays
• To provide resources to enable him to resume his studies
A major problem remains, in that he has disrupted all relations with his family. The
question remains: ‘How do we rehablitate his relationship with his family?’
How we are trying to deal with ongoing problems:
• Organising informal sessions to exchange ideas and experiences
• Discussion of specific and very complicated cases
PATA
PROCEEDINGS 2007
30
• Organising therapeutic retreats away from the hospital
• Take on the responsibility to find the resources to respond to the needs of children
n Clients requiring first line alternatives or second line treatment are referred to a central hospital 50km away
n Every client is put on CPT (cotrimoxazole prophylatic therapy)
n New clients are tested, staged, counseled and registered for initiation
We recommend :
• Separate responsibility for counselling and socio-economic assistance
• Organise support to prevent burn-out among counsellors
• Think about legal support for children and care-givers
• Increase financial resources for socio-economic needs for the youth affected by
HIV/AIDS
• Deal with adolescents affected by HIV/AIDS who are orphans and the heads
of households
The service has taken on the following projects for quality improvement:
• Within the first 3 months:
o Sports programme
o Roll out mobile clinics
o Creation of play space
Presentation 5 Brown Memorial Clinic, Nkhata Bay, Malawi Charles K. Munthali.
• Within 6 months
o Expand physical space
• Internet access
o Buy vehicle and motor boat
There are 4 ARV sites in the Nkhata Bay district. These are at Ussiya, Chinthoche,
Kande and Nkhata Bay.
The Nkhata Bay facility was named after a Miss Mary Helen Devine Brown. Her Brown
Memorial Fund financed the construction of the building we are occupying. The clinic
was opened on the 9th of Feb 2005 as part of the national scale up of ART services in
the country. It is within the premises of the Nkhata Bay District Hospital. Therefore, it’s
not a stand-alone. Nkhata Bay is a Medium Burden category clinic. (High burden – initiates up to 75 clients on treatment in a month, Medium – 50 clients and Low – 25). In 33
months we have been operating, we have put about 1650 clients on treatment to date.
For the first eighteen months the clinic was only seeing clients from thirteen years of age
and above. By July 2006, the age range included those from eighteen months. Since July
this year, we can see clients from 6 weeks of age.
The clinic operates as follows:
n Five days a week for HIV counselling and testing – Rapid tests, DBS (dried blood
spot) for PCR (paediatric diagnosis of HIV since June this year)
n Wednesdays and Thursdays for ART – group counselling, staging clients (WHO criteria), initiation of treatment, review of clients on treatment, bookings – clients to start
treatment and for next visits, nutritional support (supply plumpy nuts ==> RUTF; >=12
yrs for 4 months)
n Medicines- in Malawi, first line is Triomune (fixed dose combination of Stavudine,
Lamuvidine and Nevirapine) and first line alternative of substituting Zidovudine for
Stavudine and Efavirenz for Nevirapine
31
PATA
• Within a year
o Training
o Produce educational materials
o Partnership with organisation
To date, the following progress has been made at Nkhata Bay:
Two static clinics set up and a third to open soon
n Two mobile clinics operating twice monthly. Staff members donate their
weekend time
n Computerised data entry since August 2007 – piloted with the Chinese Medical
mission
n Piloting PCR for paediatric diagnosis of HIV since June 2007- with Baylor
College of medicine
n Trained more counsellors and hence increased testing sites from 10 last year to 15
n Participated for second year running in the national HIV testing week. Overall
in Nkhata bay 7% were positive, but higher in pregnant women at 10%.
n Trained health workers on preparing Dry Blood Spot (DBS) for PCR
n Acquiring a CD4 counter in January 2008. The government has bought for all
the district hospitals
n Internet service has been installed at the hospital
n
Current challenges:
• We are not enrolling as many children onto ARVs as we would have wanted
o Need for two guardians per child > national policy
o Clinic not children friendly > mixed (adults and children), enough playground
not created yet for children
PROCEEDINGS 2007
32
•
•
•
•
•
o Most paediatric interventions are developing now staff members are been trained
o Most staff members unsure when to put the young ones (below 18 months)
on treatment
Shortage of staff that also have to work on the general wards, so that the
clinic cannot be run throughout the week
The building is getting smaller everyday > hence too much congestion.
PCR and CD4 counts are done some 50km from our clinic at a central hospital
laboratory which takes care of 5 more clinics being piloted as well > delays results, hence potential to lose clients
Mobility along the lakeshore sites to conduct outreach clinics still a problem > boat not bought yet. We borrow the boat at the moment
High rate of defaulters
Plans for the future:
EVENING MASTER CLASSES
Tuberculosis session (Presented by Prof Ben Marais and colleagues)
TB management protocols - James Nuttall. School of Child and
Adolscent Health University of Cape Town.
Prophylaxis against TB infection (IPT) is aimed at reducing infections resulting from
contact (exposure). Anti-tuberculosis chemotherapy is designed to modify TB disease
and to affect the type of TB disease that develops.
The objectives of anti-tuberculosis therapy are (as stated by the WHO guidelines):
•
•
•
•
•
n Children should have their special day for the clinic. Already some caregivers
think this idea is good
n Expand the building. Then bring in toys and other materials for children.
n Embark on massive campaigns on paediatric ART
n Improve referral system from other referring facilities (HCT, PMTCT, paediatric ward) to ART clinic. We have to prepare clear guidelines. Also improve on
coordination
n Improve on follow up of clients awaiting PCR and CD4 results
n Orientate health surveillance assistants (HSAs) to do home visits
n Improve on tracking system of defaulters
n Adopt the NTCP (national TB control programme) - use of HSAs on home visits
Cure the patient of TB (rapidly eliminate most of the bacilli)
Prevent death from active TB or its late effects
Prevent relapse of TB (by eliminating the dormant bacilli)
Prevent the development of drug resistance (by using a combination of drugs)
Decrease TB transmission to others
Guiding principles of TB management in children are:
• Different therapy for different categories of TB disease (case definitions)
• Standardised treatment depending on category of disease
– Regimens & duration
• Intensive phase (uses more drugs to rapidly eliminate majority of orgs. & to prevent emergence of drug resistance)
• Continuation phase (eradicate dormant organisms)
• Preference for fixed-dose-combinations of drugs
• Standardisation of therapy based on weight-based dosing recommendations
• Community-based treatment using DOTS
Standard case definitions of tuberculosis in children are:
• Pulmonary TB (PTB), sputum smear-positive
– 2 or more initial sputa smears AFB+ or
– 1 sputum smear AFB+ plus consistent CXR or
– 1 sputum smear AFB+ plus sputum culture + for M.tb
• Pulmonary TB (PTB), sputum smear-negative
– Doesn’t meet above criteria
– At least 3 sputa smears AFB- and
– CXR consistent with active PTB and
– No response to antibiotics and
33
PATA
PROCEEDINGS 2007
34
– Decision by a clinician to treat for PTB
• Extra-pulmonary TB (EPTB)
– Extra-pulmonary TB only (if PTB+EPTB classify under PTB)
• Drug-resistant TB
The following drug regimens are recommended in WHO guidelines:
Table 5:
The following fixed-dose combinations of anti-tuberculosis drugs are available in South
Africa:
– HRZE 75/150/400/275 (Rimstar®, Rifafour®)
– HRZ 30/60/150 (Rimcure®, Rifater®)
– HR 300/150, 150/75, 60/60, 30/60 (Rimactazid®, Rifinah®)
TABLE 4: Anti-TB chemotherapy: Drugs & doses (FDC’s)
Regimen
TB case definitions
Intensive phase
• New smear - PTB
• Less severe forms of EPTB
• New smear + PTB
Continuation phase
2HRZ
4HR or 6HE
2HRZE
4HR or 6HE
• New smear negative PTB with
extensive parenchymal
Daily dose &
dose range
(mg/kg body weight)
Maximum
Daily Dose
(mg)
Available
formulations
(SA)
H
Isoniazid
5 (4 – 6)
300 mg
Tablet 100mg (scored)
R
Rifampicin
10 (8 – 12)
Z
Pyrazinamide
25 (20 – 30)
E
Ethambutol
involvement
• Severe forms of EPTB
(excl. TBM)
• Severe concomitant HIV disease
Capsule 150mg
Oral solution 100mg/5ml
• TB meningitis or miliary TB
2HRZS
4HR
• Previously treated smear + PTB
2HRZES/1HRZE
5HRE
2000 mg
Tablet 500mg (scored)
• Chronic & MDR-TB
Individualised/standardised
Children 20 (15 – 25)
Adults 15 (15-20)
1200 mg
Tablet 400mg (scored)
Choice of regimen and calculation of dosages requires expert knowledge in specific
situations:
Eo
Ethionamide
15 – 20
1000 mg
Tablet 250mg (scored)
S
Streptomycin
15 (12-18)
• Streptomycin or ethionamide for TB meningitis
– Streptomycin injections are painful, and the drug may cause irreversible auditory nerve damage
– There is poor CSF penetration of streptomycin, ethambutol & rifampicin
– Ethionamide & pyrazinamide have good CSF penetration
– The recommended regimen is therefore HRZEo for 6-9 months,
at increased doses
600 mg
Solution for injection
• Ethambutol dosing in children
– The drug undergoes more rapid metabolism & clearance in children compared
to adults
– Literature review indicates safety (optic neuritis) in children at a dose of
20mg/kg/day (range 15-25mg/kg/day)
35
PATA
PROCEEDINGS 2007
36
37
55-70 kg
4 tabs
2 tabs
≥71 kg
5 tabs
2 tabs
PATA
25 - 29.9
20 - 24.9
1¼
4
5
4
5
4
5
1
4
5
15 - 19.9
3
3
3
2 ½
2½
2
¾
3
2
½
1½
¼
1
2½
8 - 8.9
9 - 9.9
10 - 11.9
12 - 13.9
14 – 14.9
6 - 7.9
1½
4 - 5.9
3 - 3.9
1
2 - 2.9
½
Use Eo ¼
½
RH
dissolvable
tablets 60/30mg
(scored)
Continuation
phase 4 months
Body
Weight
(kg)
PROCEEDINGS 2007
2
3 tabs
25 - 29.9
3 tabs
20 - 24.9
38-54 kg
15 - 19.9
2 tabs
2 ½
2 tabs
1
30-37 kg
HR
150/300mg
2
HR
75/150mg
2
HRZE
75/150/400/275mg
1½
CONTINUATION PHASE
4 months
Once a day (7 ×/week)
1½
INITIAL PHASE
2 months
Once a day (7 ×/week)
½
Body weight
8 - 8.9
9 - 9.9
10 - 11.9
12 - 13.9
14 – 14.9
Table 6: Children over 8 years of age and adults
6 - 7.9
6 tablets
1
5 tablets
1
4 tablets
4 - 5.9
5 tablets
3 tablets
3 - 3.9
30-35 kg
4 tablets
½
25-29 kg
3 tablets
½
20-24 kg
2 tablets
¼
15-19 kg
2 - 2.9
1½ tablets
2 tablets
RH
E
Z dissolvtablets
able tablets
60/30/150mg 400mg (unscored)
(scored)
1½ tablets
10-14 kg
1 tablet
RH
dissolvable tablets
60/30mg (scored)
8-9 kg
RH
Z dissolvable tablets 60/30/150mg
(scored)
½ tablet
1 tablet
H
tablets
100mg
(scored)
½ tablet
5-7 kg
Intensive phase 2
months
3-4 kg
Continuation
phase 4 months
HR
30/60 mg
Intensive phase
2 months
HRZ
30/60/150 mg
6 months
CONTINUATION PHASE
4 months
Once a day (7×/week)
Body
Weight
(kg)
INITIAL PHASE
2 months
Once a day (7×/week)
Complicated TB disease
(excluding
TB meningitis & miliary TB)
Body weight
Uncomplicated TB disease
A: Children under 8 years of age:
Isoniazid
Preventive
Therapy
Table 5: Current dosage recommendations in children
TB Drug Dosing Chart for Children <8 years of age or <30 kg body weight (2008)
• Isoniazid dose in children
– 5 or 10 mg/kg/dose?
– Remember variation due to rapid or slow acetylation and the need for a higher dose in younger children (<5yrs) (at a 6 mg/Kg dose, all except a minority of FF NAT2 acetylators achieve satisfactory serum concentrations of drug)
38
Isoniazid Preventive Therapy
6 months
H
tablets
100mg
3
RH tablets
300/150m
Continuation phase
4 months
RH tablets
150/75mg
3
2
All forms of TB disease (excl. MDR-TB)
Intensive phase
2 months
RHZE tablets
150/75/400/275mg
2
3
4
5
Body
Weight
(kg)
30 - 37
38 - 54
55 - 70
71
TB Drug Dosing Chart for Children 8 years of age or 30 kg body weight
Body
Weight
(kg)
30 - 37
38 - 54
55 - 70
71
39
Important notes on TB treatment:
• All children with suspected or proven TB should have an HIV test and if HIV infected should be referred to the nearest HIV clinic for assessment for
antiretroviral therapy
• All TB drugs are given once daily every day of the week
• Drug dosages should be adjusted on a monthly basis according to the current weight of the patient
• Children >8 years of age at the time of TB diagnosis are routinely treated as adults – refer to dosing chart above (Regimen I)
• Children with uncomplicated TB disease should receive treatment at their local
TB clinic
• All children with severe forms of TB (TB meningitis, miliary TB, TB peritonitis,
spinal or skeletal TB) and those suspected of having multi-drug resistant (MDR)
TB (in contact with MDR TB case or not responding to first-line therapy) should be referred for expert opinion and management
• For children who experience persistent vomiting associated with taking TB
medication consider dividing the dose and administering twice daily (particularly
ethionamide)
• Supplemental pyridoxine (usually 12.5mg (1/2 tablet) in children & 25mg (1 tablet) in adults once daily) is recommended particularly in malnourished patients and
patients receiving antiretroviral therapy
Compiled by J. Nuttall, D.P. Moore, Red Cross Children’s Hospital, Cape Town. Adapted from
Guidance for national tuberculosis programmes on the management of tuberculosis in children,
World Health Organization, 2006 and South African National Department of Health: TB Control
Programme 2004
PATA
PROCEEDINGS 2007
40
response – even in children not on ARVs
• Antiretroviral therapy-associated immune reconstitution inflammatory
syndrome (IRIS)
The use of corticosteroids is indicated in certain circumstances
• In complicated forms of TB
– TB meningitis
– Airway obstruction by TB lymph nodes
– Pericardial TB
The recommended dose is prednisone 2-4mg/kg/day (max 60mg/day) for 4 weeks; then
reduced over 1-2 weeks before stopping
The following steps are recommended to enhance adherence:
• Treatment literacy for family/caregivers
• Directly Observed Therapy (DOTS)
– Health care worker or trained community member
• Free treatment (whether diagnosis confirmed or not)
• Fixed-dose combinations whenever possible
• Patient treatment cards to document adherence
• Hospitalise children with severe forms of TB where possible:
– TB meningitis & miliary TB (at least first 2 months)
– respiratory distress
– spinal TB
– severe adverse events e.g. hepatotoxicity
– unable to ensure good adherence
The following points are relevant in considering adverse events to TB treatment.
Although adverse responses to therapy are much less common in children than in adults,
hepatotoxicity does occur, caused by isoniazid, rifampicin, and pyrazinamide:
• Routine monitoring of liver function tests (LFTs) is not indicated
– Mild elevations (≤5×N) are common and are not an indication to stop
treatment
• In case of liver tenderness, hepatomegaly, jaundice
– Stop all drugs
– Screen for other causes of hepatitis
– Wait for LFTs to normalise before re-introducing drugs one-by-one
• Consult with an experienced clinician
The management of re-treatment and drug resistance:
•
•
•
•
The following matters should be considered in the follow-up stage:
• National TB programme requires assessment at
– 2 weeks after treatment initiation
– End of intensive phase (2 months)
– Every 2 months until treatment completion
• Examine and note symptoms, treatment adherence, adverse events, weight at
each visit
• Adjust medication according to weight gain
• Sputum sample at 2 months if sputum+ at baseline
• Follow-up CXRs are not a routine requirement
• Refer children not responding to current anti-TB treatment
When anti-TB treatment fails or relapse occurs, try to find the cause
If possible, do Mycobacterial culture & drug susceptibility testing
If unable to obtain culture from child, try to treat child according to source case
(often a parent) drug sensitivity result
Re-treatment regimen for children – take expert advice on multi-drug resistance,
appropriate regimens and duration of therapy
The following approach and regimens are suggested for MDR-TB. By definition, MDRTB is due to M tuberculosis resistant to INH and RIF:
• Use INH (double dose because some resistance is dose-related), PZA + 3-5 other drugs to which the organism is susceptible: EMB, ETH, OFL or CIPRO, Amikacin, Terizidone
• Therapy sound be given for 9-12 months
• Proven severe MDR disease: 12-18 months from time of negative culture
The immune reconstitution inflammatory syndrome is encountered in HIV-positive children treated for tuberculosis. This may present in the following ways:
• Paradoxical reaction:
– temporary clinical deterioration (new or worsening symptoms, signs or
radiological manifestations) sometimes occurs after starting anti-TB
chemotherapy due to restoration of capacity to mount an inflammatory immune
Children with TB and HIV co-infection require specific care:
• Most children respond well to the 6-month regimen
• Rifampicin should be continued for the full 6 month course
• Causes for treatment failure/relapse include
– Poor treatment adherence
– Poor drug absorption
– Drug resistance
– Alternative diagnoses (e.g. HIV-associated lung disease)
41
PROCEEDINGS 2007
PATA
42
This process of detachment and reattachment occurs in the surrounding context: Health,
any loss, trauma, rejection and abuse suffered in the home, education drugs activities,
sex, suicide, depression – as experienced outside the home. All these factors have relevance in an holistic assessment that includes an assessment of health and environment.
All these factors have relevance in developing interventions.
– Failure to treat adult household contacts
– Failure to test child for HIV infection & initiate cotrimoxazole &
antiretroviral therapy
Parallel Master class: Care of the Adolescent
The adolescent master class was presented by a team including Shelley Horwitz, Diane
Melvin, Licia Karp, Donna Futterman, Des Michaels and Renee Nassen
Presentation 1 Why worry about Adolescents? - Licia Karp. Department of CHild and Adolscent Psychiatry Red Cross Children’s Hospital
University of Cape Town.
Adolescence is a distinct biological developmental phase with distinct medical needs.
Each adolescent experiences contextual factors that help or hinder healthy adolescent
development. Chronic illness and HIV-infection are factors that add to the stressors of
adolescent development.
Because adolescence is a distinct psychosocial developmental phase with distinct
psychosocial needs, if intervention is needed it should suit the emotional, psychological,
mental developmental stage of the patient.
It is normal for the adolescent to exhibit an increased incidence of more risky behaviour;
and to experience sexual (romantic) preoccupation and experimentation.
The adolescent psyche is in transition: Using an analogy from the computer world, one
could say that the old programme (being a child) is in the process of being deleted; while
the new programme (being an adult) is not yet not yet fully downloaded.
Hence the adolescent has no established internal programme to rely on. Sometimes it is
there, and sometimes it is absent. The adolescent exhibits behaviour which mirrors this:
Sometimes he or she is a child, 2 minutes later an adult, 10 minutes later a frustrated
teenager. The adolescent cannot rely on insight /judgment that they had in the past –as a
child - nor can they cannot rely on the insight and judgment of an adult (which takes 8
-10 years to develop).
Therefore adolescents struggle with fluctuating and insecure insight and judgment –
about themselves, the world around them, and the relationship between the two
The major psychosocial task of adolescence is to move from thoughts, feelings, behaviour, time and energy, with full focus on parents and family, towards thoughts,
feelings, behaviour, time, energy, with full focus on the outside world, as manifest in
the peer group.
43
PATA
The diagnosis of chronic illness in an adolescent often triggers some trauma and grief
reactions. These can include denial and avoidance of health care. Adolescent moods
tend to swing from high optimism to intense despair but often include denial of illness in
an attempt to cope… a sort of hopeful optimism sustains them (especially in their efforts
to be ‘normal’ with peers).
The danger inherent in these adolescent reactions is that they may lead to problems
with adherence and high risk acting out behaviour such as comfort seeking through sex,
drugs, etc.
In children who are infected by vertical transmission of HIV, these problems are aggravated by the cognitive impairment, delayed psychosocial development and poor insight
and judgment which are often associated. In these young people there is an increased
danger of poor behavioural choices.
In horizontally infected adolescents, there are similar problems to those experienced by
those who have been vertically infected. If the young person was at risk for unprotected
sexual acting out, drug taking and suicide there is a major increase in risk during the
process of receiving the bad news and adjusting to the diagnosis.
There is a great need for health care workers to gain basic interactional skills with
‘difficult’ teenagers. Though much of the time the necessary acumen in dealing with
adolescents has less to do with any specific knowledge, or telling the youth what to do
in a directive way, but is more about building a trusting relationship and using a nonthreatening guiding style.
Presentation 2: HIV Care for Adolescents – Donna Futterman. Albert
Einstein College of Medicine, New York (www.AdolescentAIDS.org)
The first step in dealing with adolescents as a health care worker is to assess your personal beliefs, values and attitudes to adolescents and about sexuality.
Do you really like adolescents; are you cut out for the job? Not everyone is and you
certainly should not take on the task of looking after the health of adolescents if it does
not suit you.
PROCEEDINGS 2007
44
The second requirement is that you need to build the adolescent’s trust in you and be
able to assure him or her that you will keep all interactions and information in the strictest confidence.
The Web site www.AdolescentAIDS.org will direct you to programmes such as ACTS:
The third step is to make no assumptions about the adolescent’s actions and thoughts.
You need to be clear headed and you should not pre-judge anything.
•
•
•
•
Fourthly, you need to interact with the adolescent’s family as far as possible and with the
permission of your patient
This project starts with the view that HIV testing is for everyone and suggests approaches to motivation for testing, preparing for treatment and adherence to therapy.
In the fifth place, you need to be a well trained and informed clinician, able to provide
all necessary services and to know where and how to make referrals
This Web site also directs one to training modules
At all points, you need to follow the LEARN approach:
n
n
n
n
n
Listen to the patient’s explanation
Explain your perspective
Acknowledge differences in perspective between the patient and yourself
Recommend treatment
Negotiate treatment (to address everyone’s concerns)
A–
C–
T–
S–
Advise
Consent
Test
Support
Presentation 3 The Challenges of children surviving HIV infection Dr Renee Nassen. Department of Child and Adolescent Psychiatry, red
Cross Hospital, University of Cape Town.
The neuropsychiatry service at the Red Cross Children’s Hospital is a referral site for an
HIV-positive patient population, the majority of which is vertically infected and institutionalised. Common referral problems include disruptive behaviour, bereavement and
alienation from family, behavioural disorders secondary to developmental delay, CNS
abnormalities and learning difficulties.
Clinicians should be equipped to manage adolescents at risk:
Adolescents attending the service present with mood disorders, rarely with psychosis, issues
around sexuality, anxiety about HIV status, problems relating to growth stunting, issues of
identity and/or belonging, scholastic difficulties and social and or emotional immaturity.
• Provide counseling, recommend testing to sexually active adolescents
• Take a sexual history at annual physical examination (activity, abuse, assault)
• Assess risk issues:
1.Substance abuse
2.Home environment
3.History of violence
4.Orphanhood, involvement in foster care
5.Family history
6.Suicidal gestures or attempts
• Adolescents with symptoms of depression or other severe psychiatric disorders
should be referred urgently. Risk of suicide indicates that HIV-testing should be
deferred
• Establish referral lines and standard operating procedure for testing
• Identify a supportive adult
Case report:
A thirteen year-old boy was referred to the neuropshychiatry service for aggressive behaviour and poor social skills, resulting in disruptive classroom behaviour, depression,
suicidal ideation and outbursts of aggression. None of these episodes were associated
with loss of consciousness.
His medical history included the diagnosis of foetal alcohol syndrome and congenital
syphilis at birth, HIV infection diagnosed in 1993, 6 hospital admissions for severe
infection prior to starting ARVs, weight and height constantly below the third percentile
for age and sustained CD4 levels and an undetectable viral load since starting ARVs.
A large percentage of South African youth aged 17-25 are HIV positive (17% female
and 4% male). Most of these young people still don’t know they are infected and only
discover this when they develop symptoms of AIDS.
His cognitive profile was reported as ‘borderline’ at 2 and 5 years of age; and at 13
years of age he scored 55 on the SAIS-R-VIQ, 72 on the PIQ and 58 on the FSIQ. He
was labeled as moderately delayed and seen to be anxious, without signs of inattention.
On examination he was notably microcephalic, had an otherwise normal neurological
45
PATA
PROCEEDINGS 2007
46
ficulties; has remained withdrawn, lives in a fantasy world and dissociates from reality;
has refused to accept his HIV status or race; and repeated Grade II in 2001.
examination and had an abnormal EEG with a generalized spike and wave pattern.
Psychiatric diagnoses included MDE, adjustment disorder, mild cognitive disability,
consequences of institutionalization and an abnormal EEG, with positive HIV status.
He was first assessed in the Psychiatry Service in 2002. The Nazareth House staff complained at that time of outbursts of aggression and verbal abuse. He as observed to be
‘out of control’.
Management included fortnightly individual sessions, Sodium Valproate (initiated in
April 2005) and Fluoxetine (initiated in July 2005).
During individual sessions the following themes emerged:
• A wish to be reunited with his biological family
• A concomitant fear of leaving Nazareth House (his children’s home)
• Fears of becoming an adolescent- growing in size
• Concerns around his HIV status
• Anxiety about living and surviving
Progress on therapy was marked by a manic episode in Sept 2006; memory deficits and
ongoing problems with scholastic performance and classroom behaviour. This spectrum
of problems made his placement a problem, though it was possible to re-connect him
with his family
A second case
This 16 year-old Xhosa and English-speaking boy was responding well to ARVs, living
in a community cottage run by an institution and attending a mainstream school. He was
abandoned by his mother in 1993 and raised by a step-grandmother. He was first admitted to Somerset Hospital with malnutrition in 1994 and was admitted to Nazareth House
after being abandoned at a police station.
At the age of two, he was noted to have delayed milestones. He was constantly withdrawn and never smiled. He tended to play on his own and avoided physical contact. He
had, in the course of time, been diagnosed with Miliary TB, meningococcal meningitis
and HIV encephalopathy.
He was started on ARVS in 2003 and had a good response. He has had an undetectable
viral load since starting therapy. His weight remains below the 10th percentile for age
and his height is on the 25th percentile.
His cognitive profile shows an SSAIS-R Global score within the average range. He has
no attention problems and is very articulate. He does demonstrate fleeting eye contact
and a qualitative impairment in person-to-person interaction.
His initial assessment was that he was apparently preoccupied with revenge; very angry;
dysphoric in mood; had paranoid features and lacked concentration, orientation and
insight.
He expressed the following wishes:
‘That I was a normal boy who belonged somewhere and to someone’
‘That I could be like Peter Pan and never grow up’
After his 13th birthday and a move to a community cottage, his behaviour improved.
His psychiatric diagnoses include adjustment disorder, dysthymic disorder, Aspergers
Disorder and problems related to his social environment.
Evening Keynote Address:
PMTCT and Paediatric HIV/AIDS Care and Treatment Report Card:
Progress in Scaling up Responses – Chewe Luo Senior Programme
Adviser, UNICEF, New York
In November 2007 Children continue to be infected despite the fact that we have tools to
eliminate this infection:
• 2.5 Million children are now living with HIV
• An increase from 1.5 million reported in 2001
• In the past year there have been 420,000 new HIV infections
– Decline from 460,000 reported in 2001
• 330,000 children have died of HIV
– Similar to figure reported in 2001
– A decline from 460,000 reported in 2005
There is a slow accumulation of scientific evidence to guide the development of management guidelines:
Sentinel features in his psychiatric history are that he has peer group relationship dif-
• There is increasing clarity on what ARVs are likely to give us maximum benefit
• The WHO recommended PMTCT regimen AZT with single dose nevirapine can
effectively bring down vertical infection to 5 - 6% in breastfeeding populations
47
PROCEEDINGS 2007
PATA
48
• The body of evidence pointing to the protective effect of exclusive breast feeding
on HIV transmission has grown
• Evaluations have gone beyond assessing HIV transmission risk to impact on
child survival
• The impact of HAART on HIV transmission risk, particularly during breastfeeding
is under evaluation and results are expected soon
The 2001 United Nations Global Assembly Special Session on HIV/AIDS PMTCT
Goals has set the goal of reducing the proportion of infants infected with HIV by 20%
by 2005 and 50% by 2010, by:
• Ensuring that 80% of pregnant women accessing antenatal care receive information, counseling and other HIV prevention services
• Increasing the availability of and providing access for HIV-infected women and babies to effective treatment to reduce MTCT of HIV
• Annual national data (Jan to Dec) is reported through UNICEF and WHO country offices
• 2007 data to be collected end of Jan 2008
• Validated by Ministry of Health in collaboration with in country partners
• Analysed by UNICEF in collaboration with WHO and UNAIDS
• Global data bases are to be used as denominators to ensure standardisation
• Unfortunately, data quality is dependent on the quality of reporting
• In some of the countries data collecting mechanisms very weak
C. & Eastern Europe
East Asia and Pacific
South Asia
Middle East & North Africa
All low- & middle-income countries
13
22
20
21
18
20
East and South Africa
6
C & Eastern Europe
2004
2005
2006
14
22
24
8
16
10
8
1
1
58
14
18
7
8
1
1
71
97
2005
14
2006
However, ante-natal facilities providing PMTCT services remain limited
Figure 8
14
Middle East and North Africa
1
C.&S. America and the Caribbean
5
South Asia
5
West and Central Africa
13
East Asia and the Pacific
14
East and Southern Africa
40
C. & E. Europe and the Caucauses
There is an improvement in reporting status
East and South Africa
Central and south America
and Caribbean
TOTAL
There has been increased emphasis on monitoring and evaluation:
West and central Africa
67
TOTAL COUNTRIES
West and Central Africa
Commitments have been made:
C.&S. America and Caribbean
Figure 7:
42
0
26
5 10 15 20 25 30 35 40 45
percent of facilities providing ARVs for PMTCT services
20
World wide, only 16% of all pregnant women and 21% of women attending at least 1
ANC visit were HIV tested in 2006.PMTCT ARV coverage of women testing positive
rose to 20%; with a notable increase in East and Southern Africa to 27%. Data show that
in the seven countries with the highest under 5 mortality rate attributable to HIV, women
are gaining increased access to ARVs for PMTCT
16
11
7
4
108
And more countries are reporting data on children living with HIV in need receiving
ART, in 2006 than in 2004.
49
PATA
PROCEEDINGS 2007
50
Figure 9:
In Sub-Saharan Africa, where most infected children live, significant progress in achieving access to ARVs is being achieved.
Figure 11:
More women have access to ARVs for PMTCT in 7
countries with the highest HIV attributable U5M rate,
2004 - 2006
Significant progress is being made in u-Saharan Africa
where 89% of all children (<15) in need of ART live
Number of HIV-infected children (<15) on ART
100%
80%
60%
40%
20%
0%
2004
2005
2005
Botswana
Lesotho
Namibia
Swaziland
Zambia
Zimbabwe
South Africa
90,000
84,817
80,000
70,000
60,000
48,981
50,000
No. of HIV-infected
children (<15) recieving ARV treatment,
2005
40,000
30,000
20,000
10,000
4,174
0
East and Southern Africa
Figure 10:
West and Central Africa
Figure 12: Distribution of children in antiretroviral treatment, in 10 countries with the
largest number of children in need of ART, 2006
South Africa, 67, 519
Proportion of children (<15) in need of ART receiving
it according to region, 2006
100%
72%
80%
20%
0%
Rest of low and
middle income
countries,
159, 698
14%
33%
87%
26%
9%
All low
and
Middle
income
Countries
14%
West and Middle
Central East and
North
Africa
Africa
17%
South
Asia
10% ART
coverage
11%
6%
United republic of Tanzania,
31, 179
6%
28%
East and C. and E.
Southern Europe
and the
Africa
Caucusses
35% ART
coverage
Nigeria, 52, 189
55%
60%
40%
No. of HIV-infected
children (<15) recieving ARV treatment,
2006
11,248
12% ART
Ethiopia, 21,375
East Asia
and the
Pacific
C. and S.
America
and the
Caribbean
4%
5%
5%
5% 5%
6%
11% ART
Uganda, 30, 472
25% ART
Zamibia, 23,230
31%ART
Zimbabwe, 25, 271
Mozambique, 24,410
17% ART
14%ART
Democratic Republic
of Congo, 24, 976
Kenya, 29, 582
34% ART
<1% ART coverage
51
PATA
PROCEEDINGS 2007
52
• There is improved scientific evidence on effective ARV regimens; and infant feeding approaches to guide program implementation
• In 2006 however, only 17 low and middle income countries were “on track” to reach the UNGASS target of 80%
Access to cotrimoxazole for HIV-exposed infants remains a grave problem:
Figure 13:
1,696,00 out of 1,720,077 infants born to HIV positive mothers
are unprotected from opportunistic infections
C. & E. Europe
13,000
C. &S. America,
35,000
East Asia and the
Pacific 28,000
West and Central
Africa, 522,000
There are a number of remaining challenges to be met:
• Limited human resources and infrastructure are obstacles to scaling up of programmes
• There is inadequate integration of HIV care into maternal and child health
services
Weak coordination between PMTCT and MCH
PMTCT is still viewed as a vertical programme
PMTCT not included in the basic MCH package of services
Separate service providers, rooms and monitoring tools for these
separate programmes
• There is poor follow-up of women and children
• There are weak linkages between MCH and HIV care, support and treatment
• There is a lack of guidance on and weak monitoring of elements of the UN
comprehensive approach, Infant Feeding, counselling and support
South Asia, 74 000
M. East and N. East Africa,
2,000
East and Southern
Africa, 1,022,000
These are the challenges that clinics such as those represented in this forum need to address.
Less than 2% of infants born to HIV infected mothers were
initiated on contrimoxizale prophlyaxis
Day 2 Plenary Session
Evidence based PMTCT and paediatric care and treatment programmatic approaches are
increasingly being implemented in low and middle income countries. Increasing numbers
of countries are planning to scale up treatment access. The use of a patient held record as a
means of monitoring access to and use of health care programmes is increasing.
While there is still a great deal to be done, much has been achieved:
• Most countries have national strategies
• Numbers gaining access to programmatic care are going up nearly everywhere:
• In 2006, 16% , compared with 11% in 2005, of the total estimated number
of women giving birth were tested for HIV
• The proportion of HIV positive pregnant women who received ARVs for
PMTCT has increased from 7% in 2004 to 11% in 2005 to 20% in 2006
• In all regions, more HIV-infected children are gaining access to ART with
over 50% increases
• HIV testing in young children using dry blood spots is increasing
53
The plenary session on day 2 presented the forum participants with further input relating
to headline topics.
TUBERCULOSIS AND HIV/AIDS IN CHILDREN
Presentation 1 Childhood TB: Epidemiology & Prevention. Ben
Marias. Ukwanda Centre, Tygerberg Hospital and University of
Stellenbosch
Robert Koch lived between 1843 and 1910 and discovered M. Tuberculosis in 1882.
The salient features of pulmonary tuberculosis are that it causes a destructive disease
process characterized by cavity formation in the lung; and that it is spread by droplets in
the aerosol.
Adults are maintenance hosts for the disease and children are ‘spill-over’ hosts. Susceptibility in children is enhanced by poverty and HIV infection, both of which increase
exposure to the organism and vulnerability to infection.
PATA
PROCEEDINGS 2007
54
The WHO reports that the prevalence of tuberculosis in Sub-Saharan Africa exceeds 300
cases per 100 000 population. This prevalence rate may be compared to a rate of less
than 25 per 100 000 in North America.
TB control programmes have been characterized by a vertical nature and a top down
approach, with a focus on TB control (“the epidemic”) only. In addition, there has been a
lack of financial interest for the drug industry.
The prevalence of all forms of tuberculosis has been on the increase and the increase is
greatest in association with HIV/AIDS:
HIV advocacy and recent research has helped to change these perceptions. In fact, childhood tuberculosis is not rare. It contributes between 15 and 20% of the disease burden
due to tuberculosis every year, with an incidence approaching half the rate of that in
adults (407/100 000/year versus 845/100 000/year in a recent study from Cape Town).
Nor is the disease process limited. In a study from Zambia, published in 2002, tuberculosis was as common a cause of death in children as acute pneumonia.
Estimated TB incidence,
cases/100,000 population/year
Figure 14: Incidence of TB cases per 100 000 population, 1990 - 2005
As the importance of childhood tuberculosis has become better recognized, a willingness
to change the approach to this problem has increased.
Africa - High HIV
400
300
Africa - low HIV
200
World
exc AFR EEUR
0
1990
The strategically important considerations regarding any planned change in approach to
childhood TB must be:
World
E. Europe
100
1995
2000
2005
Both the burden of smear-positive and smear-negative tuberculosis are on the increase,
as measured in sentinel sites, such as Masiphumelela, near Cape Town, the population
has doubled between 1996 and 2004, whereas the number of cases of TB notified per
annum has trebled. The estimated prevalence of HIV infection has risen from 6.3% of
the population to 21.9%. The incidence of new cases has risen in all age groups and a
three-fold increase in prevalence amongst young adults has been accompanied by a 50%
increase amongst children and a new epidemic amongst youth aged between 10 and 19
years.
Childhood TB has been neglected, because of a pervasive belief that it is not an important condition, that it is rare, results in limited disease and poses no transmission risk.
This logic has directed programmes to focus on diagnosis and treatment of adults with
sputum smear positive TB.
55
New initiatives such as the ‘stop TB partnership’ – a working group to expand DOTS;
WHO guidelines for childhood TB published in 2006; the Global Drug Fund project to
provide child-friendly formulations since 2007 and the working group of the International Union Against TB and Lung Disease.
PATA
Is the proposed change feasible?
Will the recommendations made be practical and can they be implemented?
Any change should not jeopardize current efforts to control TB.
There are evident ways to reduce the burden of childhood TB:
• We can direct our efforts to prevent infection. To achieve this goal, we need to make administrative decisions and changes, we need to address pressing environmental
issues and we need to educate and facilitate personal habits and safety from exposure. Ultimately, this is the best strategy to control the epidemic and clearly, primary
prevention of infection is ultimately the least costly strategy to follow
• We can attempt to prevent disease in those who are already infected. To do this,
we need to address the vulnerability of those most at risk and we need to institute preventative therapy
• Among children who are already diseased, we need to improve early diagnosis and facilitate access to effective treatment
It is very important that health care workers should be aware of the risk of nosocomial infection with TB. It is in health care facilities that children at the highest risk
(under 5 years of age, most vulnerable to infection) are exposed to TB at the highest
intensity. Always remember that the infant in whom you have diagnosed tuberculosis may have been infected by the mother who is sitting at the child’s bedside every
PROCEEDINGS 2007
56
day. She, if she has cavitating pulmonary tuberculosis, presents a very high risk of
infection to other children in the paediatric ward, most of whom are likely to be
under 2 years of age.
There is a very high risk of infection to other patients from:
• patients suspected of TB,
• those who have been diagnosed smear positive and have had less than 2 weeks
of TB therapy
• Those who have drug resistant TB
• Others when wards are under ventilated or overcrowded
And there is always a high risk of infection in children and other vulnerable groups
(such as patients with HIV/AIDS.) There is equally a high risk of infection from patients
amongst staff belonging to vulnerable groups and a risk to patients from members of
staff in whom the diagnosis of TB is delayed.
Effective strategies for the control of TB entail administrative, environmental and personal interventions.
Administrative interventions include
• Facilitation of early diagnosis
• Prompt initiation of treatment
• Ambulatory rather than in-patient care
• The provision of effective treatment
• Physical separation of patients (isolation)
• Rationalisation of patient flow patterns
is only possible if there has been infection following exposure.
In paediatrics, the risk of disease is highest within the first year of infection (between
10 and 40%) in children under 3 years of age and lower (between 2 and 5%) in children
over 3 years old. In HIV infected children, the risk of disease after infection remains
high, regardless of age or time since infection.
In both HIV-infected and -uninfected children, suspicious symptoms are always relevant.
If the diagnosis of TB in children is based on screening for relevant symptoms, then
symptom severity in children correlates with progression of disease and the likelihood of
diagnosis increases as the time since infection increases.
Symptom-based screening is currently recommended, because recommendations in
respect of tuberculin skin testing (TST) and chest radiography are rarely implemented,
because they are not readily available. If child contacts with adult TB are asymptomatic,
they are unlikely to have disease and additional testing beyond symptom screening is
unnecessary to exclude active disease. A positive TST does not influence management.
All children in close contact with a sputum positive index case and all children of a
mother with smear-negative pulmonary TB should be screened for symptoms.
Children should be screened for any current symptom of possible TB disease, including
• Cough
• Wheezing
• Fever
• Reduced playfulness, fatigue, lethargy
• Weight loss
• A visible neck mass
Environmental interventions include
Asymptomatic contacts, children in vulnerable groups (all children under age 3 and all
HIV-infected children) should receive prophylaxis with 6 months of INH or 3 months of
INH and Rifampicin
• Improved ventilation
o Improvement of natural ventilation
o Mechanical exhaust ventilation systems
• Germicidal UV light
o Natural UV light
o Artificial UV light
• The effect of this is uncertain
• The effect is reduced in dusty and or humid conditions
• Personal protection: It is uncertain whether masks worn by health care personnel
effectively reduce the risk of infection from aerosolized MTB
A screening algorithm is presented on the folowing page.
Interventions to prevent disease following infection with M tuberculosis are based on the
understanding that infection is only possible if there has been exposure and that disease
57
PATA
PROCEEDINGS 2007
58
Presentation 2 Combining ART & TB treatment in children
James Nuttall. School of Child and Adolescent Health, University of
Cape Town.
Figure 15: TB Screening algorithm
PROPOSED SCREENING ALGORITHM
TB is common in children living with HIV. They have a 10% risk of acquiring TB
per annum and when they are infected, the disease has life-threatening manifestations
especially in young children. It is difficult to diagnose or to exclude the diagnosis of TB
in children, especially in young children and children with advanced HIV disease. This
leads to both over and under-treatment of TB. There is a high mortality rate in children
with HIV/TB co-infection. This is mostly due to advanced HIV disease and acute opportunistic infections.
Documented exposure
Symptom-based screening
Asymptomatic
Symptomatic
High Risk
Low Risk
<3yrs or immune
compromised
≥3yrs & immune
competent
INH
Because TB and HIV so often occur together, it is essential to treat them concurrently,
but there are complicating factors. These complications include drug-drug interactions,
drug-host interactions (toxicity), the immune reconstitution inflammatory syndrome
(IRIS), limited paediatric formulations of anti-TB drugs and ARVs leading to complex
regimens and a high pill load, limited data on absorption, metabolism & elimination of
these drugs in children, especially children <2 yrs of age and a lack of pharmacokinetic
studies in young children.
Exclude active
TB CXR, TST
Irrespective of age
or immune status
Observe
Marais B et.al. Ped Infect Dis J 2006 / Marais, B et al. Paediatric Resp Rev 2007
Figure 16: Management algorithm for childhood TB
Interaction of Rifampicin with the NNRTIs Efavirenz and Nevirapine results in
decreased plasma concentrations of ARV drugs, loss of antiviral efficacy and drug
resistance & treatment failure. Because Rifampicin stimulates the Cytochrome p450
system, the rate of catabolism of these substrates (NNRTIs Efavirenz and Nevirapine) is
increased, and serum concentrations of the drugs decline. Ritonavir and Fluconazole, on
the other hand, inhibit the p450 system and substrate drug concentrations increase.
Child in close contact with
case of smear-positive PTB
Well
6H**
If becomes
symptomatic
The WHO currently recommends an NNRTI-based ARV regimen (AZT or d4T
+3TC+NVP under age 3 or less than 10Kg; and AZT or d4T +3TC + EFV in children
over 3 years or 10Kg.
Aged >5 years
Aged <5 years
Symptomatic*
Evaluate for
TB disease
Symptomatic*
Well
The advantages of these recommendations are programmatic (simplicity and cost) and
related to their efficacy. Disadvantages are potential difficulties arising from the use of
NNRTI-based ART among infants exposed to single-dose NVP (PMTCT); the low threshold to development of viral resistance when 3TC and NNRTIs are used together; and concerns around safety & efficacy of NVP-based ART with rifampicin-based TB treatment.
No treatment**
Rifampicin decreases serum concentrations of NVP by 20-55%. Adult cohort studies
show similar rates of viral suppression in patients receiving rifampicin-based TB treatment + NVP-based ART compared with patients treated with NVP-based ART alone. A
possible solution is to increase the dose of NVP. The problem here is inter-patient variability in metabolism and overlapping toxicity profiles of Rif and NVP (hepatitis & skin
rash). Nevertheless, this practise is widespread due to lack of alternatives.
If becomes
symptomatic
* If TB is suspected, investigate as per guidelines
** Unless the child is HIV-infected (in which case INH 6/12)
59
PATA
PROCEEDINGS 2007
60
Undoubtedly paediatric PK and cohort studies are needed to establish how this approach
should be managed.
Rifampicin decreases serum concentrations of EFV by 20-25% in adults. The standard
dose of EFV results in high rates of viral suppression despite high inter-patient variability in trough concentrations and in patients on concomitant TB treatment. EFV concentrations are not significantly different in children on rifampicin compared to children
without TB. EFV concentrations are sub-optimal in both groups, suggesting that current
EFV dosing recommendations for children may be too low.
Rifampicin decreases serum concentration of Ritonavir (RTV) by 35%. RTV is an
hepatic enzyme inhibitor partially blocking the enzyme-inducing effects of rifampicin.
Use of a full dose of RTV is limited by gastrointestinal & metabolic side-effects and its
limited availability and short shelf life.
Lopinavir is the predominant PI used in children. Rifampicin decreases its serum concentration by 75%. The low dose of RTV in the combination of LopinavirRitonavir is insufficient to block the enzyme-inducing effects of rifampicin. Higher
doses of RTV may be used to boost PI levels (“boosted-Kaletra”) when giving rifampicin. Boosted-Kaletra with TB treatment has been shown to be effective in a paediatric
PK study & a clinical cohort study. This is the strategy currently recommended in South
Africa.
A weight based dosing chart was recently developed for the Dept. of Health in the Western Cape. It is adapted from WHO guidelines and is the subject of an ongoing research
study that seeks to analyse it for purposes of validation/accuracy and acceptability to
clinicians, including nurses. It differs from the dosing chart that appears in the current
national guideline and is largely effective in avoiding under-dosing. It is hoped that such
a chart may be included in future national guidelines.
Doubling the dose of Kaletra has also been used to overcome the enzyme-inducing effect of rifampicin. This approach resulted in high rates of hepatotoxicity in healthy adult
volunteers. A paediatric PK study investigating the safety and efficacy of double-dose
Kaletra is currently in progress.
It is suggested that in cases of concurrent TB and HIV, the following treatment strategies
should be employed:
•
61
Children >3yrs/>10kg (& unexposed to perinatal NVP)
– Start EFV-based regimen
– If on NVP, switch to EFV
– If on Kaletra, switch to boosted Kaletra or double-dose Kaletra
•
•
•
•
Children <3yrs/<10kg (or exposed to perinatal NVP)
– If Ritonavir available
Start/switch to boosted Kaletra
– If Ritonavir not available
Start/switch to double-dose Kaletra or continue with NVP or consider triple
NRTI regimen
Monitor for hepatotoxicity & treatment failure
Presentation 3 Preventing Tuberculosis in HIV infected Children.
Helena Rabie. Tygerberg Children’s Hospital, University of Stellenbosch.
High TB and HIV prevalence rates overlap in Sub-Saharan Africa. This overlap has
major implications for the delivery of health care to children with HIV/AIDS. While
improved pragmatic guidelines and an acknowledgement of the burden of childhood
TB has changed responses to the threat of dual infection, major problems remain. Chief
amongst these are that smear negative, culture positive TB in HIV infected adults complicates the diagnosis and the emergence of drug resistant TB.
There is also increasing awareness that children are easily under-dosed with anti-TB
drugs especially when they have HIV/AIDS. In general there is an increasing focus
worldwide on TB.
Things can go rapidly downhill in children who are co-infected with TB and HIV, because each of these diseases can worsen progression of the other.
To begin with, HIV positive children remain highly susceptible to developing TB disease, at all ages and regardless of the time since infection.
Whereas BCG vaccination helps to prevent miliary tuberculosis & TB meningitis in HIV
negative children, it does not prevent pulmonary tuberculosis and has never been shown
to prevent any form of TB in HIV infected children. While current recommendations
are to vaccinate all children at birth, unvaccinated HIV- infected children should not be
vaccinated with BCG
Active case finding in adults is a strategy that would lessen exposure of infected children. A 3 minute interview screening for symptoms of TB in 366 pregnant women in
Soweto identified TB in 8 (2.2%). Young children with TB are important index cases.
A recent study found disease in 15% of parents in children diagnosed with TB under 18
months; and in 35% of parents in children under 6 months of age.
Smear-negative TB, though less infectious than smear positive disease, accounts for up
to 17% of infections in exposed children. Transmission from smear-negative children to
adults is also possible.
PATA
PROCEEDINGS 2007
62
Whereas the child is most at risk of infection from a smear positive contact in the home,
the majority of childhood infections occur outside the home, in high prevalence populations. In South Africa, children are infected by persons outside the home or from an
unknown source in 51% of cases.
AIDS and 2 to 8 weeks after in stage 3 HIV/AIDS with severe immune-suppression. In
Stage 3 disease with mild to moderate immune suppression, ARVs may be delayed until
TB treatment is complete. Should the response to TB treatment be poor, ARVs should be
started earlier.
Management of an HIV-infected child who has been in contact with TB requires exclusion of TB as a first step. All children regardless of age should receive INH, because
the likelihood of TB infection following exposure is high. A Tuberculin skin test is not
required prior to commencing INH prophylaxis.
Presentation 4 Manifestations and diagnosis of Tuberculosis. Ben Marais.
WHO and SA guidelines recommend INH for 6 months while the AMA recommends
9 months. The efficacy of INH prophylaxis is estimated to be 21% at 3 months, 65% at
6 months and 75% at 12 months. Adherence support will be necessary to sustain INH
administration.
Management might be different if the HIV-positive child has been exposed to drug
resistant TB. In such a case, one needs as much information about the source case as
possible. Optimal management is not clear at present, but high dose INH (15-20mg/kg/
day) might be appropriate. Where possible, back up decisions with an expert opinion.
Some practitioners give INH prophylaxis to all HIV -exposed and -positive infants as
‘pre-exposure prophylaxis.’ The risks of such management are that TB will be undertreated and that one might generate INH resistance through monotherapy.
In a RCT comparing INH with placebo carried out by Zar et al, randomization was
discontinued by the DSMB when at an interval analysis it was shown that 11/132 (8.3%)
had died in the group randomized INH group compared with 21 /131 (16%) in the
placebo group. INH had reduced the incidence of TB by 70% and all cause mortality by
50%.
It is not yet clear what the role of INH prophylaxis is for children on HAART, or whether routine INH prophylaxis would increase primary INH resistance in the community.
The correct treatment strategy for children developing TB whilst on INH prophylaxis
has not been established.
When a breastfeeding mother has TB, the infant must be evaluated for TB, put onto INH
for 3 months, must be given a Tuberculin skin test at 3 months and then a BCG if TST
negative. If the TST is positive, the infant should receive a further 3 months of INH –
providing there is no evidence of TB.
Anti-retroviral therapy and INH prophylaxis together have been shown to be most effective in reducing TB disease in HJIV-positive adults.
The process of infection to cure in tuberculosis is well described as a series of key transitions, as explained by Don Enarson.
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
A susceptible host must be exposed
The exposed host must become infected
The infected host must become diseased
The diseased host must become sick
The sick must find access to care
Those who find access to care must be recognized
Those who are recognized must be diagnosed
Those who are diagnosed must be treated
Where treatment begins it must be completed
Where treatment is completed it will result in cure
The risk of symptoms due to a hypersensitivity reaction begins at 2 weeks after infection
and persists until 10 weeks after infection. Miliary TB and TBM risks have their onset
at 6 weeks after infection and persist at low level in HIV-positive children. Disease
resulting from lymph node involvement and pleural effusion has its onset from 3 months
to 8months after infection. HIV- infected hosts have a persistent risk of reactivation
disease.
The age-related risk of pulmonary tuberculosis is more than 30% in immune compromised infants who are under one year of age, falls to approximately 2% at five years and
recurs at approximately 14 % in adolescence. The risk of disseminated TB tracks the risk
of pulmonary TB and is highest at approximately 14% in infants. Symptoms suspicious
of TB are always relevant in HIV-infected children and should be investigated in all
cases.
Radiological diagnosis in childhood TB requires training. Diagnosis depends on recognition of a) The Ghon focus, b) Signs of a Ghon focus that has become complicated c)
Lymph node disease involving the lung hila (on antero-posterior and lateral views), d)
Lymph node disease with complication e) Pleural effusion (which must be distinguished
from empyema and para-pneumonic processes f) Miliary disease; and g) adult-type
disease with cavitation (in children aged 10 years and older).
The WHO recommends starting ARVs 2 to 8 weeks after TB therapy in Stage 4 HIV/
63
PATA
PROCEEDINGS 2007
64
Confirming the diagnosis of TB depends on isolating the organism. In intra-thoracic
tuberculosis, this is possible in less than 40% of cases if the disease is uncomplicated,
but in complicated disease is possible in up to 76% of cases. Extrathoracic lymph node
disease can be confirmed in 100% of cases through biopsy.
The diagnosis of TB in childhood depends on the ‘diagnostic triad’ of known contact
with an index case, a positive tuberculin skin test (TST) and a suspicious chest radiograph. There is an unavoidable dependence on subjective interpretation of the radiograph.
Immune-based diagnosis of TB has received a great deal of attention. Both the Quantiferon test spectrum and the T-Spot test register the production of interferon Gamma
(IFNγ) in response to tuberculosis antigen and measure IFNγ by an antibody detection
technique.
who characteristically have ‘pauci-bacilliary’ (low organism count) disease. It is of less
use in extra-pulmonary disease and does not differentiate one Mycobacterial species
from another.
Fluorescent microscopy produces better results than conventional light microscopy, is
equally specific and takes less time, but the required mercury vapour lamp does not last
long and is very expensive to replace.
The currently available diagnostic strategies are illustrated in the figure below.
Figure 17:
PHAGE BASED ASSAYS
Table 7: Comparing the Tuberculin Skin test with new diagnostic techniques
(2-3 days)
Characteristic
TST
Sensitivity (active TB)
30-90% (lower in immunocom- 50-95% (T-spot TB most
promised)
sensitive in HIV-infected)
Cross reactivity with:
Yes
No
Yes
Limited data
BCG
NTM
Benefit of IPT
Reproducibility
Affected by boosting
Reversions
Patient visits
Lab infrastructure
Cost
Yes
Reasonable
Yes
Rare
2 (result void if fails to return)
No
Low
IGRA’s
Culture
With
identification
(+ 2-6 weeks)
Susceptibility
Testing
(+ 4-8 weeks)
Limited cross reactivity
Limited data (-control)
No (?effect of TST)
TK Media
(2 weeks)
Limited data (do occur)
MODS
(7 days)
1 (still requires FU visit)
Yes
High
None of these tests can differentiate a latent TB infection from active disease.
Bacteriological diagnosis by microscopy has the advantage of identifying the most
infectious patients – those with the highest load of M tuberculosis in their sputum. It is
also simple, rapid and inexpensive. Although it is highly specific, it is not very sensitive, because one requires a large number of organisms - 10 4 -5 per ml - to make the
diagnosis. This reduces the value of microscopy in children and in HIV-infected adults,
65
Microscopy
(within 24 hrs)
PCR-based
tests
(1-2 days)
PATA
Traditional culture systems use Lowenstein-Jensen (LJ) medium and Middlebrook agar.
TK media provide a technique for rapid culture, which yields results in 5 to 18 days. The
Microscopic Observation Drug Susceptibility assay (MODS) gives results in a median 7
days, is more sensitive than the LJ medium (97.8% versus 89.1%) and permits simultaneous detection of INH and Rifampicin drug resistance.
There are several ways to collect sputum specimens from children. Gastric lavage is
the current standard. This requires 3 sequential collections with overnight starvation
each time. It is unpleasant and requires hospitalization Alternatives include a string test,
nasopharyngeal swab, bronchoalveolar lavage (BAL) and induced sputum.
PROCEEDINGS 2007
66
Sputum induction requires nebulised hypertonic saline to be delivered for inhalation
(3-5ml of 5% hypertonic saline via ultrasonic nebulizer). This results in interstitial fluid
being drawn into airways, mobilisation of lower respiratory secretions and stimulation of
coughing. Suction will then draw expectorated secretions up for examination.
Fine needle aspiration can be done on lymph nodes and bone marrow aspiration offers
diagnostic tissue in some cases.
In the majority of cases, childhood TB is currently diagnosed by radiology. Reliable
diagnosis is possible in a symptomatic, HIV-uninfected child if interpreted by an experienced clinician, who will require good quality antero-posterior and lateral views.
Caution should be exercised in asymptomatic children and the diversity of disease manifestations should be taken into account.
Symptom-based diagnosis is possible when infection in a specific child has progressed
to disease. Symptoms are generally more severe in disease that has progressed further
and diagnosis by symptoms therefore becomes easier the further disease has progressed.
On should pay careful attention to the history of a chronic cough. The cough of tuberculosis is persistent and non-remitting. This distinguishes it from the cough of acute infection with delayed recovery, and the recurrent cough of a disease such as asthma.
Figure 18: Careful definition of the symptom
Well- Defined
cough
2) Recurrent
3) Persistent, Non-remittent
A response to treatment for tuberculosis may provide retrospective support for the diagnosis. Once treatment is initiated one should always complete regardless of the presence
or absence of a response to treatment.
Presentation 5 HIV Care for Adolescents. Donna Futterman.
HIV/AIDS remains a major problem for adolescents. Half of new HIV infections occur
among youth aged 13-24 years and two thirds of the youth are infected by sexual activity (60% of young women). Growing numbers of peri-natally infected youth are surviving into adolescence. The vast majority of HIV-positive youth are undiagnosed because
they have net been tested.
Adolescents need access to four key elements of care: Medical care, psychosocial care,
prevention and transitioning.
1W
4W
67
The presence of a persistent non-remitting cough of >2 weeks duration, together with
documented failure to thrive (during the past 3 months) and reported fatigue (decreased
playfulness), provides a fairly accurate diagnosis of TB at presentation. In uncertain
cases, clinical follow-up (after 2-4 weeks) provides and additional diagnostic tool that
has great value, especially in low-risk children (>3 years of age) where the risk of rapid
disease progression is very low.
Young people are vulnerable to STIs because adolescence is the age of experimentation.
The average age of sexual debut is as low as 16 years and young girls are at risk because
of power imbalances. Females are also biologically vulnerable because the immature
cervix is more easily infected by HIV, because their STIs, which increase risk, are often
asymptomatic and because transfer of infection is more efficient from male to female.
Socio-economic vulnerability of poverty and inadequate sex education opens the female
up to coercive sex or sex for favours.
1) Acute with Delayed
Intensity
Of
Cough
The array of symptoms said to result from tuberculosis is of variable value in making
a diagnosis. Cough or wheeze for more than 2 weeks, failure to thrive (for the past 3
months) and unusual fatigue are the most useful. Fever for more than a week, lethargy
(often with TBM) and chest pain (due to effusion or adult type disease) are less helpful
symptoms. A history of night sweats, haemoptysis and a loss of appetite are not helpful
in children.
2W
Medical care should be able to deliver staging HIV Illness according to WHO criteria
and with access to CD4 counts. On-site or referral for ARV therapy must be available. It
should be remembered that the puberty stage guides which medications should be given
and at what doses. Adherence among adolescents will present challenges. It will require
that the patient understands HIV and his/her role in sustained benefit form ARVs. Opportunistic infections prevention and treatment should also be well understood, so that the
3W
PATA
PROCEEDINGS 2007
68
adolescent will seek appropriate help. The management of STIs, access to family planning, pap smears and other gynaecological services should be available in an integrated
service. Ongoing screening should be in place to detect TB, nutritional disturbance and
changes in blood counts.
Psychosocial care should maintain confidentiality and respect cultural norms. As an
acronym for remembering points to cover in taking the history/making a psychosocial
health assessment in the adolescent, HEADSS is useful:
• Home, Education, Activities, Drugs, Sexuality, Suicidal ideation/Depression
Make sure that at every visit you make an assessment of how the young person is coping
with disclosure, whether he/she has support at home, and whether stigma is problematic.
Screen for any sign of mental health disorder, concurrent trauma, loss or abuse.
Adolescent services should project a coherent and consistent message regarding prevention: Protect yourself and others. Choose your prevention strategy and stick to it:
Abstinence; Be faithful (1 at a time, reduce number of partners); Condomise: Negotiate
use with partners; Disclose your status to your partner;
Clinics must be accepting (and non-judgmental) regarding sexual orientation and must
provide access to care or termination of pregnancy and family planning.
The concept of transitioning recognises that adolescents are negotiating two passages
between two populations: First pediatric to adolescence and then adolescent to adult.
Transition requires two functioning care models: One pediatric the other adult. Adolescence is a unique developmental stage into independence (eg. impact on adherence) and
transition is a “process” to promote personal responsibility for care, that comes with a
number of family and confidentiality issues.
Prevention strategies for the youth have been proven difficult. Behavior change is very
difficult and prolonged interventions have been more successful. Most successful programs combine skills-based and knowledge-based training.
as an STI. Research has not shown that pre-test counseling works for prevention, but
provider initiated antenatal testing now presents a successful model for use in all clinical
situations.
The best model for adolescent care is multidisciplinary with a youth-friendly mission.
Medical services should be comprehensive, including sexual health services. Psychosocial services should provide case management; mental health and substance abuse
services; risk reduction and contraception counseling; and disclosure counseling and
support.
It is important that health care providers in an adolescent unit should understand their
own personal beliefs and clarify the values which they bring into their work with adolescents. Health care workers in such a unit need to build trust and confidentiality. They
should make no assumptions about their adolescent patients’ actions or thoughts. Their
attitudes and actions must facilitate selective disclosure. To this end, they should offer
to interact with the adolescent’s family. They should provide services and facilitate referrals to expert services as required.
The youth attending HIV/AIDS services will need to be led through stages of coping with their disease, from learning their HIV status, through supported disclosure to
family/partners, an understanding of their CD4 and Viral Load, symptoms they might
encounter, the importance of taking medications and when necessary, terminal car and
death.
Points to consider for adolescents gong onto ARVs include: A check for pubertal development, because Tanner stage I or II indicate that pediatric dosages should be calculated,
whereas Tanner stage V indicates that adult dosages are appropriate. Where it is available, resistance testing can be done before initiation of therapy . It is important to avoid
Efavirenz-based regimens with females who might be or become pregnant. Remember
that a once-daily regimen of non refrigerated medications improves adherence.
HIV counselling and testing have not evolved as treatments have. The message should
be much clearer that HIV testing is the only way to get life-saving care. Patients overwhelmingly accept HIV testing when a provider recommends it and can understand HIV
The following offer once daily dosing:
• Abacavir
• Didanosine
• Lamivudine
• Emtricitabine
• Tenofovir
• Efavirenz
• Atazanavir
• Ritonavir-boosted atazanavir
• Ritonavir-boosted fosamprenavir
• Ritonavir-boosted lopinavir
69
PROCEEDINGS 2007
Behavioral prevention is clearly not enough. Rates of infection among youth are increasing. Abstinence “only” sex education is not effective, but comprehensive ABC models
are better. Part of any prevention programme must include treatment of STIs, male
circumcision, vaccines, vaginal microbicides and PMTCT. The promotion of routine –
provider initiated HIV testing is very important.
PATA
70
Prevention is a vital strategy to project the future of the youth, even for HIV-positive
adolescents. They should be encouraged to disclose to their partner and motivate partner
testing. HIV-positive patients should be counseled on prevention (higher viral load-more
infectious) and efforts should be targeted on safer sex, condom access, universal precautions and needle exchange.
The rate of uptake of HIV testing depends on decreasing barriers, increasing available
testing outlets and reconnecting testing with clinical care (through provider-initiated and
delivered testing). Rapid testing technologies must be used to promote retention in care
and positive-testing adolescents must be liked to ARV care in a ‘seamless’ fashion.
Presentation 6 Psychosocial Needs Assessments for Young HIV infected
Children. Desiree Michaels. Department of Paediatrics, Red Cross
hospital and university of Cape Town.
The psychosocial impact of HIV/AIDS on HIV infected South African children is insufficiently documented in the literature and there is correspondingly a dearth of psychosocial interventions targeted at this vulnerable child population. This presentation reports
on a pilot study done to document the psychosocial impact of HIV disease upon infected
children; to demonstrate the need for intervention with this population, to provide
recommendations for the development of a targeted intervention (theoretically based in
social ecological and family systems models) and to develop a multidisciplinary model
of management of HIV infected children in the Infectious Diseases Clinic at Red Cross
Children’s Hospital (RXH).
This was a case controlled study conducted at RXH, on 45 HIV infected children and
their caregivers recruited from the Infectious Diseases Clinic and 45 controls and their
caregivers, recruited from the outpatient department excluding chronic follow-up clinics
(eg. Allergy).
Assessment included a socio-demographic questionnaire, screening for symptoms of
caregiver depression (CES-D), questions about the child’s development – (SA- version
of Vineland), questions about child’s behavior (Child behavior checklist), the Child
Depression Inventory (questions about child depression), the RCMAS (questions about
child anxiety), the Pediatric Quality of Life Inventory (questions about child’s quality of
life), the Kidcope (general coping strategies used by child), the Child Spiritual Coping
Survey (spiritual coping strategies used by child), the Beery-Buktenica Developmental
test of Visual Motor Integration (VMI) and Free hand Drawing of ‘my family’ using
colour pencils.
plinary team approach to management of HIV infected children at RXH. The committee
consisted of Dr René Nassen (Child Psychiatry), Dr Reneva Pietersen (Developmental
clinic), Noluthando Loleka (Social Work) and Dr Brian Eley(Representative IDC).
In 33 of 47 cases (70.2%) the agency to which the child was referred was specific:
Thirty-eight per cent were referred to Psychiatry, 32% to a Social Worker, 19% to Developmental Clinic and 11% to clinical psychology. Their mean age was 9 years (range
6-12 years).
Social work referrals were for facilitation of disclosure of HIV status to the child,
facilitation of discussion of HIV testing for caregivers/partners, facilitation of access
to school psychological services for placement in special schools and for liaison with
school teachers – assessments for psychiatry referrals.
Clinical referrals were for physical obstacles to development (eg. Hearing, sight,
speech); to rule out physical causes of enuresis and encopresis; to rule out psychological
symptoms as medication side effects (eg. Nightmares, hyperactivity, insomnia); and an
8½ year-old boy – orphaned, not on ARVs yet, because “…no one loves me”
Children were referred from child psychiatry for child depressive symptoms, hyperactivity, and cognitive and/or developmental delay.
In two cases, aged 6 and 7 years, it was not possible to complete any assessments. They
were suspected to have developmental delay. This led to revision of study criteria to
increase the age of entry into study to 8 years.
Thirteen cases attending Child Psychiatry were discussed briefly: Two girls had presented with depression. In one boy and one girl the problem was identified as maternal
depression. One boy and one girl had had problems with maintaining attention. Three
children had been struggling at school and had presented with a variety of behavioural
problems. In one boy chronic illness and recurrent hospitalization had interfered with
schooling. Two boys presented with gender identity problems.
Lessons learnt from this project included the finding that successful implementation of
a multidisciplinary approach requires physical space and proximity for team members
to function. There are significant language barriers between professionals and patients
(and a lack of support to bridge the gap). Cognitive assessments and special school
placements are necessary for improved quality of life of HIV infected children having
difficulty in school.
A case review committee was set up to develop a model for establishing a multidisci-
It is clear that child psychologists are required in such a service. Non-disclosure of HIV
status to the child is common across the age range (6-12). School-going children are
‘falling between the cracks’.
71
PROCEEDINGS 2007
PATA
72
Lay counsellors can be trained to administer the psychosocial assessment instruments
and simple screening tools are necessary for use in a routine clinic setting – but it is not
clear who should be administering them.
Implications for the service are that co-ordination between services within health system
(eg. IDC, developmental, psychiatry) are essential. The early identification of developmental delay – before age 5 – is a priority. It is important to create a link between
education support services (school clinic) and Health services for HIV infected children
regarding school placements. Bottlenecks in the system for identifying children with
psychological problems and accessing services must be identified and managed.
Presentation 7 HIV in the HAART era: The neuropsychological impact.
Renee Nassen.
The initiation of ARV therapy in children HAART era saw a dramatic improvement in
survival. More children are surviving into adolescence and adulthood. As a result, there
are major concerns regarding cognitive, neurological and behavioural sequelae in survivors and questions about the educational implications of functional deficits, if any.
HIV positive children have exhibited higher rates of psychiatric disorders with depression, ADHD and anxiety disorders and have required a five times higher rate of psychiatric hospitalizations. The severity of HIV disease as measured by immune indices has
been associated with ADHD and depression. In general, this group has received higher
rates of psychotropic drug prescription.
It is not clear whether the increase in psychiatric disorder is related to viral infection
or to psychosocial causes. It has also not been established whether a longer duration of
HIV/AIDS is associated with increased psychopathology over time.
It appears that the substantial systemic effects of HAART are not matched by neurocognitive improvement. Decisions to start HAART should therefore probably not be made
based on neuro-cognitive abnormality. The educational needs of these children will not
be met by mainstreaming and they remain a challenging group, at high risk of psychiatric disorders
Following these plenary presentations, participants went into small group discussions to
answer the following questions:
Important questions to answer are: Has HAART been as effective in its neurocognitive
effects as in its physical effects? Do systemic effects of HAART outweigh neurodevelopmental ones? Do short, medium and long term neuropsychological outcomes differ?
Have direct effects of HIV been clearly elaborated vs. psychosocial impact on neurodevelopment? What about the directly neurotoxic effects of some antiretroviral medications? What about psychiatric manifestations-virally or psychosocially related? Where
and how should these children be educated?
In Professional groups, workshop 1:
a) Through the eyes of your professional group, how do you feel about the way
you help the Adolescent? What would help to improve your service?
b) Through the eyes of your profession, what is the impact of TB on our service?
What would help to improve your service?
Early work on the effects of anti-retrovirals revealed no improvement neurodevelopmental function in children treated with AZT. Later studies with agents that penetrate the
CNS and multi-drug regimens showed a dramatic effect on HIV-related encephalopathy
and survival.
Looking back on the plenary talks, master classes and this morning’s workshops, how
might our team improve its service for children with TB/HIV and for the Adolescent?
Studies on older children not on ARVs have revealed specific neuropsychological
deficits, more severe cognitive deficits with CNS disorders and an associated increase in
mortality.
Afternoon Plenary:
Studies in the DRC, Rwanda, Uganda and Tanzania have shown cognitive performance
to be poorer in HIV-positive children. The timing of horizontal infection in older
children has had different effects on spatial memory, language and motor deficits. Older
children had similar cognitive performance to sero-converters while HIV unexposed
survivors had less severe deficits. The timing of horizontal infection had an effect on the
extent of spatial memory, language and motor deficits.
73
PATA
In Teams, workshop 2:
Results of these workshops are summarised in Appendix A
Panel of Observers
Team Stories
Open Forum
Evening Master Classes:
TB/HIV: Anti-retroviral therapy. Helena Rabie
Therapy has been around for years. AZT was FDA approved in 1987. By 1990 AZT was
proved to be effective and the development of other drugs followed. These drugs were
PROCEEDINGS 2007
74
used in developed countries and at the time they were unaffordable in developing countries- only the rich had access through private health. The ‘three by five’ programme was
meant to address the problem in developing countries
Anti-retroviral drugs (ARVs) are drugs proven to stop or delay disease progression of
disease. They interfere with viral replication at different levels and are the only effective
treatment for HIV or AIDS. They do not represent a cure, but stop illness from HIV for
years, provided they are taken every day for rest of your life.
Care and treatment are essential for good health in an HIV-positive person and antiretroviral drugs are only one part of the treatment needed.
The logical reasons for using ARVs is that they are the only drugs proven to slow disease progression. AIDS represents an enormous cost to the individual and society. The
individual suffers illnesses, medical costs and loss of income or decreased productivity.
Society loses productivity, medical costs and funeral costs.
The history of ARV development saw AZT monotherapy in the 1980’s, combination (or
dual) therapy in the late 1980’s and triple therapy, or HAART (Highly Active Anti-retroviral Therapy), in use in the early 1990’s. Currently triple therapy is the only recommended treatment strategy.
This regimen is appropriate for all adult & adolescent men and for post-menopausal
women and those who have had tubal ligation or hysterectomy.
The reason for this is that Stocrin can cause birth defects in pregnancy. This regimen is
therefore a safe and effective regime for all adult men and women will take this regimen,
except for women who might fall pregnant.
For children, the first line regimens are: If aged 6months to 3years: d4T+ 3TC+ Kaletra.
This regimen is compatible with a second line regimen of AZT ddI+ Nevirapine> Stocrin
This first-line regimen was instituted because children exposed to Nevirapine in PMTCT
programmes are at risk of having infections with NVP resistant virus.
For children over 3 years old, or weighing more than 10 Kg, if not previously exposed
to Nevirapine, the first line regimen is: d4T +3TC +Stocrin. This is compatible with a
second line regimen of AZT+ ddI + Kaletra.
The second line regimen is for use in children with severe side-effects resulting from
regimen 1 and for those failing regimen 1.
There is at present no third line regimen available.
There are 15 drugs currently recommended by the South African Medicines Control
Council. Each has three different names: A research name, a generic (common) name
and a brand name.
The primary goal of anti-retroviral therapy is to prevent death and reduce morbidity. The
patient should experience fewer HIV-related illnesses. The patient’s CD4 count should
rise and remain above the baseline count. The patient’s viral load should become undetectable (<400 copies/mm3), and remain undetectable on ARVs.
The common ARVs in use are: Nucleoside Reverse Transcriptase inhibitors –NRTIs 3TC (Lamivudine, Epivir), d4T (Zerit,Stavudine), AZT (Zidovudine, Retrovir),
ddl (Videx, Didanosine); Non-nucleoside Reverse Transcriptase inhibitors –NNRTIs
- Nevirapine (Viramune), Efavirenz (Stocrin, Sustiva); and Protease Inhibitors – PI
Kaletra (lopinavir/ritonavir).
Secondary goals of ARV therapy for adults include an increase in voluntary testing and
counselling with more people knowing their status and practicing safer sex. ARVs will
also reduce transmission in discordant couples (discordant couples means one partner
is positive and one negative) and reduce the risks of HIV transmission from mother to
child.
First line regimens are commonly made up of two NRTIs plus an NNRTI
Anti-retroviral therapy may be seen as a form of secondary prevention in HIV/AIDS, in
that in improving immunity, it diminishes the incidence of opportunistic infections and
slows the rate of progression to death.
• 1a – d4T/3TC/efavirenz
• 1b – d4T /3TC/NVP
Such first-line regimens would permit a second line regimen of
• 2 – AZT/ddI/lopinavir/ritonavir(kaletra)
Regimen 1a would consist of d4T, 3TC and EFV in the morning (with Co-trimoxazole
while the CD4+ count is depressed) and d4T and 3TC in the evening.
75
PATA
Children should be started on ARVs when their CD4 counts fall below set, age-specific
limits, or if they present with clinical evidence of immune deficiency (recurrent infections requiring hospitalization) or so-called ‘AIDS defining conditions’. At the time
of presenting this talk, a CD4 count of less than 15% (in children over 18 months of
age), AIDS defining illness and the presence of a person responsible for overseeing
the administration of ARVs to the child are preconditions for starting treatment in a
child.
PROCEEDINGS 2007
76
Before starting anti-retroviral therapy, the patient and care-giver should be prepared.
Necessary information should be given and care-giver’s concerns addressed. Side
effects should be explained, including the facts that not all patients experience side
effects, that most side effects are mild but that there are serious side effects that can
lead to death. It is generally true that patients starting ARV late tend to experience
more discomfort. The risk of side effects must be weighed against risk of developing
full-blown AIDS.
Adherence is key and poor adherence can lead to resistance. Stigma and non-disclosure
may mitigate against adherence, in that the effort taken to conceal ARVs in the home impede regular dosing. The caregiver must be committed to life-long therapy for the child.
This commitment depends on acceptance of the real need for adherence.
Alcohol abuse and the use of drugs in the home are warning signals of future non-adherence. In general, a lack of organization in the home indicates a risk of non-adherence.
Chaos is the enemy of adherence.
Adherence is vital because non-adherence will inevitably lead to the development of a
population of virus that is resistant to ARVs. This is potentially disastrous, because there
are limited options for second line therapy.
Resistance is defined as the ability of some micro-organisms to withstand attack from
previously effective drug treatments. Despite ARVs, some resistant mutation of the
virus will persist in all infected patients. Should adherence not be adequate, a larger
population of virus, more likely to harbour resistant strains will persist. Over time, drug
resistant virus replication will cause the viral load to rise and the CD4+ count to fall.
Missed doses of ARVs mean that ARV levels fall to a point where virus can replicate. It
has been established that adherence to at least 95% of required does is needed to sustain
viral suppression.
Patient-centred adherence support comes in the form of educational material and peer
support to enhance self monitoring. Good rapport with clinic staff, acceptance (non-denial) of HIV status, ongoing counselling, increased knowledge of ARVs and awareness
of side-effects all correlate with better adherence.
Well counseled patients will take the pills because they know why, will understand the
reasons for food restrictions and requirements, will understand the reason for time
compliance, will understand the implications of late/ missed doses, understand some
of the major side-effects and are able to cope with them and will understand the
ways in which resistance develops, therefore know the reason for time, pill and food
compliance.
77
PATA
Practical support of adherence includes:
n
n
n
n
n
n
n
n
n
Make sure the drug schedule fits the patient’s life.
Define precisely what you mean.
Organize the patient to divide doses on a daily basis using pillboxes, small pill
containers etc.
Explain the importance of being organized where routine may be disrupted
(i.e. spare doses in strategic places such as the car, handbag)
Advise the use of timers (cell phone alarms are ideal since most people have it and carry it with them on a daily basis)
Explain the “what if” situations like forgetting doses and vomiting pills
Encourage the patient to keep a drug diary
Encourage the patient to keep record of side-effects
Make regular follow up appointments
Monitoring includes assessment of drug tolerance, identification of side effects, assessment of adherence and pill counts. Patients are seen at 4, 8, 12 weeks then 3 monthly if
they are stable. Patients on Nevirapine are seen at 2weeks after starting treatment. CD4
count and viral load are done 6 monthly.
Complications of Anti-retroviral Therapy (ART). James Nuttall.
Immune Reconstitution Inflammatory Syndrome (IRIS)
When the immune system is weak there is a decreased ability of the body to fight
diseases. Infections (TB) can be present in the body but the body fails to respond. When
ART is started it boosts the immune system hence the body’s ability to fight infection.
The patient then starts experiencing signs and symptoms of disease (fever, cough etc.).
Besides TB, shingles, new herpes attacks, CMV, Molluscum contagiosum (inflammation), PCP, M. Avium and Cryptococcal Meningitis can all present as IRIS.
IRIS is not a drug side effect but rather a manifestation of infections that were hiding in
the body. IRIS presents 2-11 months after starting treatment. The response is temporary
but can be severe, though not usually an indication to stop treatment. With the coprevalence of opportunistic infections, especially TB, clinicians need to identify immune
reconstitution so as not to compromise treatment.
Side Effects of ARVs
Most people on ARVs will experience side-effects at some time. Mostly these are mild,
but are unpleasant and occur especially in the first 8 weeks of treatment. Most go away
after some time and can be controlled, but some are life-threatening.
PROCEEDINGS 2007
78
Short-term side effects include headache, tiredness, nausea, diarrhea, dizziness, sleeping
difficulty, bad dreams or nightmares, rash and mild confusion.
With Efavirenz, dizziness, insomnia, impaired concentration, drowsiness, abnormal
dreams and hallucinations are relatively common. Manic and paranoid reactions can
occur and depression and skin rash are less common. Patients being prepared to start
Efavirenz must be screened and pre-existing neuro-psychiatric symptoms must be stabilized. Patients must be educated about side effects and reassured of the drug’s effectiveness and that side effects are usually mild and with limited duration.
Long term side-effects (particularly of protease inhibitors - PIs) include lipodystrophy,
which is associated with changes in body shape. If the offending regimen is changed
early effects can be reversed.
The non-nucleoside reverse transcriptase inhibitors (Nevirapine and Efavirenz) are associated with a potentially serious erythematous, maculopapular, pruritic rash distributed
over trunk and arms. Fever may precede the rash, which can be associated with myalgia
and fatigue. Mucosal involvement, conjunctivitis, involvement of palms and soles and
joint pain can develop into a full-blown Steven Johnson Syndrome. If this occurs, it is
usually within the first two months after starting therapy.
ARVs should be stopped immediately. Do urgent transaminase assays. If the ALT is five
times the upper limit of normal refer to hospital. If the ALT is less than 5 times the upper
limit of normal then monitor closely until rash has settled.
Peripheral neuropathy presents as tingling and numbness of hands and feet and is most
commonly associated with the use of ddI and d4T. Other causes of peripheral neuropathy include HIV itself, alcohol abuse, INH therapy, diabetes and vitamin deficiencies.
If symptoms continue to worsen, moving higher up the limbs it a sign of a more serious
problem. Stop all ARVs and refer to an expert. It is advisable to change the agent causing
peripheral neuropathy when patient restarts ART. Adults should decrease or stop smoking.
Liver disease can be a result of any ARV but occurs commonly with NVP. It presents
with nausea, vomiting and jaundice. ALT blood tests should be done before starting NVP
and should be repeated every 2, 4 and 8 weeks after starting treatment. It is appropriate to stop all ARVs and refer to an ART Centre. Once the liver has recovered a ‘liver
friendly’ regimen can be selected.
Pancreatitis has been associated with ddI and d4T therapy. It presents with abdominal
pain radiating to the back and with vomiting. This is a life-threatening condition. ARVs
should be stopped and the patient should be admitted to hospital. Change the ARV regimen when the patient has recovered.
79
PATA
Lactic acidosis is most frequently associated with NRTIs. D4T and ddI in combination
carry a high risk, but all NRTIs can cause this complication. It occurs 1 to 20 months
after starting with NRTIs and presents non-specifically with fatigue, nausea, vomiting,
abdominal pain, unexplained weight loss, dyspnoea and muscle pain. Blood tests will
show raised lactate levels that may rise acutely or gradually over time. Specific risk factors include being female, obesity, prolonged exposure to NRTIs especially ddI, d4T or
DDC, acute infection and pregnancy.
Suspected lactic acidosis should be managed by stopping all ARVs and hospital admission. A safer regimen can be chosen once all symptoms have settled.
Abdominal pains should never be ignored. They may be associated with the use of ddl
(Videx) and d4T (Zerit), lactic acidosis, pancreatitis and tuberculosis. Abdominal pains
in a patient on ART should be referred.
Evaluation of abdominal pain should include arterial blood gas analysis, serum amylase,
lipase levels and liver function tests.
Lipid abnormalities are primarily reported with PI’s, though there are also some reports
of abnormalities with NNRTIs and NRTIs. Abnormalities include increases in total
cholesterol - most common with PIs, while increase in HDL has been reported with Efavirenz. Increased levels of triglycerides and cholesterol are associated with an increased
risk of heart disease and stroke.
Management includes lifestyle modification with increase in exercise, a proper diet and
weight loss if over-weight, the avoidance of recreational drugs, smoking and alcohol.
Medical management may include lipid lowering agents.
Elevated glucose levels are seen in association with PI therapy and may precede adult
onset diabetes. Management includes lifestyle changes with exercise, low fat diet, hypoglycaemic agents and recommendations to stop smoking.
AZT therapy is associated with anaemia, headache, malaise, myalgia, anorexia and
nausea. Up to 10% of patients on AZT will develop anaemia. Neutropaenia is seen, but
less commonly. Clinical features include pallor, dizziness and weakness. Management
includes monitoring haemoglobin levels and investigation for other causes of anaemia
such as iron deficiency or blood loss. If anaemia is severe, transfusion may be needed.
Severely affected patients should be referred. If AZT is the cause of anaemia, it should
be substituted.
Lipodystrophy refers to loss of fat in the arms, legs and face and accumulation of
visceral fat in the abdomen, breasts and dorsocervical area (buffalo hump). Patients pre-
PROCEEDINGS 2007
80
senting with these features should be screened for diabetes and glucose intolerance and
lipid metabolism disorders. This disorder is seen with Protease Inhibitors mainly.
Structured treatment interruption is not recommended, but can be done under specialist
supervision. Regimens are changed in the following circumstances:
The condition responds if recognized early to exercise, substitution of d4T with AZT,
substitution of LPV/r with an NNRTI and lipid lowering agents.
• When there is treatment failure as indicated by an increased viral load, a drop in CD4 count or disease progression (exclude adherence failure)
• When there is re-infection with a resistant virus
Minor gastro-intestinal complaints such as abdominal discomfort, nausea and vomiting,
loss of appetite, diarrhea, constipation and heartburn are relatively common. These are
usually self limiting but can cause dehydration, electrolyte imbalances, weight loss and
malabsorption. Older patients should avoid coffee, smoking, spicy food, unknown herbal
medicines and non-steroidal anti-inflammatory agents. Diarrhoea may occur with PI’s
and ddI, but the medical attendant must ensure that it is not due to other causes.
Drug interactions
Abacavir is associated with a severe hypersensitivity reaction which is not dose dependent and involves multiple organ systems. Patients present with fever, general malaise,
nausea, vomiting, diarrhoea and abdominal pain. A rash may occur but is often mild.
Nausea can be actively and effectively managed by diet and drugs that relieve nausea.
Patients should be referred if nausea does not resolve. There is a need to assess such
patients properly and to see if there are other associated symptoms likely to be due to
another process.
Interactions can either be
– pharmacokinetic
• Affecting absorption e.g. Abacivir decreases AZT absorption
• Distribution
• Metabolism
• Elimination of other drugs
– pharmacodynamic
• One drug causing a change in the drug effect of another
– Antagonistic e.g. giving d4T and AZT together
– Additive
– Synergistic
Drug Resistance
Table 8: Major Drug Interactions
This is a great obstacle to successful care and results in poorer clinical outcomes. Testing
for resistance is costly. There are two types of testing available:
Genotyping
• Extracting DNA to detect resistance mutations in specific genes
e.g. Reverse transcriptase and protease
• 1-2 weeks for results
n Phenotyping
• Similar to MC&S
• Looks at the ability of viruses to grow in varying concentrations of drugs
• 2-3 weeks for results
n
AZT
d4T, Other bone marrow suppressing agents
3TC
None
DDI
Resistant mutations occur at random, during viral replication. The resultant change in
the viral nucleic acid sequence leads to a change in the viral amino-acid structure.
Abacivir
Lopinavir / ritonavir
None
NNRTIs will require dose adjustments. Antihistamines,
phenytoin, phenabarbitone, carbamazepine, dexamethasone,
Oestrogen contraceptives, Rifampacin, Rifabutin, Calcium
channel blockers, Ketoconazole, Itraconzole
Nelfinavir
Antihistamines, NNRTIs, clarithromycin, phenobarb,
phenytoin, oestrogen contraceptives, Rifampicin
NNRTIs account for 45-80% of early treatment failure. 3TC accounts for 30-50% of
early failures. Patients with high viral loads have viral populations that undergo more
frequent mutations. There is approximately 1 mutation for every viral copy produced.
81
PATA
Tetracycline and fluorquinalone absorption. Possible
azole, dapsone absorption as well
PROCEEDINGS 2007
82
The future of anti-retroviral therapy
Table 9: Food and Drug Interactions
Drug
Food restriction
Other
EFV
Take on empty
stomach. absorption
with food
Avoid alcohol
NVP
Not affected
d4T
3TC
Table 10: Time to develop a vaccine
Not affected
Not affected
ddI
Empty stomach
AZT
Low fat meal
Lopinavir / ritonavir
Take with meals
plasma concentration
saquinavir
Future hopes for therapy lie in the new strategy of fusion inhibitors, microbicides to
reduce sexual transmission and the development of vaccines.
Buffered tablets can be dispersed
in clear apple juice
Garlic, grapefruit juice,
St johns wort
The following traditional medicines interact with Cytochrome P450 St John’s Wort,
garlic, ginseng, milk thistle, geniposide, skullcap.
n
n
n
Discovery of
cause
Vaccine
Developed
Years elapsed
Pertussis
1906
1926
20
Polio
1908
1955
47
Measles
1953
1983
30
Hepatitis A
1973
1993
22
Hepatitis B
1965
1985
16
HIV
1983
?
?
HIV and TB
‘Pharmacovigilance’
n
Vaccine
Remember these are fairly new drugs
There is limited knowledge about side effects, drug-drug interactions, interactions with traditional remedies (it is very important to be willing to work with
traditional healers)
When clients are on ARVs it is better to encourage them to take the prescribed
medication and nutritional supplements to minimize these interactions
It is our responsibility to observe and record the following:
n Identify and report any new safety concerns about ARVs and other medicines
n Identify risks and harm associated with ARVs
n Detect, assess safety concerns related to traditional medicines used in HIV
HIV is the most powerful factor known to increase the risk of TB. Compared with
an individual who is not infected with HIV, a person infected with HIV has a 10 times
increased risk of developing TB. TB notifications have increased in populations where
both HIV infection and M. tuberculosis infection are common. Some parts of subSaharan Africa have seen a 3–5 fold increase in the number of TB case notifications over
the past decade. HIV seroprevalence in these TB patients is up to 75%. In sub-Saharan
Africa, one-third or more of HIV infected people may develop TB.
There have been significant increases in the number of pulmonary and extrapulmonary
cases of TB. Disseminated TB is more common. Because of the increasing number of
smear negative cases it is more difficult to diagnose TB.
Patients with a CD4 count > 250 generally present with the same clinical sign and
symptoms as non-HIV infected individuals. Pulmonary TB presents with associated
fever, cough, sputum production, chest pain, weight loss of appetite and malaise
83
PATA
PROCEEDINGS 2007
84
Table 11: Managing TB and HIV together (Adult doses):
to individuals with latent TB to prevent progress to active disease.
Clinical trials in adults have shown that the risk of developing TB is reduced by 60%, prolonging the life expectancy of patients. The protective effect is expected to last for 18 months.
n Should be integrated in package of care
n VCT services should be readily available
n Effective Screening protocols should be in place
n Resources to follow-up patients and to encourage adherence should be in place
n There should be strong collaboration between the HIV / AIDS and TB programmes
n
TB Develops while on ART
TB infection is present before
starting ART
Continue ART throughout TB treatment
Patient on first-line therapy should generally be swapped to Efavirenz as follows
CD4 > 200cells/ mm³ (and no other
HIV related symptoms
Stavudine 40mg(or30mg if <60kg) every 12 hours
PLUS
n Lamivudine 150mg every 12 hours
PLUS
n Efavirenz 600mg at night
n
Second-line therapy needs to be changed
to a regimen compatible with TB treatment as follows
Second line therapy
n Zidovudine(AZT) 300mg 12 hourly
n Didanosine (ddI) 400mg once a day (250mg daily if <60kg)
n Lopinavir / ritonavir 400/400mg every 12 hours
n Start and complete TB treatment.
Assess need for ART afterwards
CD4 < 200cells/ mm³
n Delay ART until after 2 months
intensive phase of TB treatment
n Then start first-line therapy as below
Caveat: Exclude Active TB:
n
CD4 < 50cells/ mm³ or other serious
HIV related illness
Implementation of preventative therapy:
n Introduce ART as soon as the patient
is stabilized on TB therapy(no less than
two weeks between starting TB therapy
and starting ART)
First-line therapy
n Stavudine 40mg(or30mg if <60kg) every 12 hours
PLUS
n Lamivudine 150mg every 12 hours
PLUS
n Efavirenz 600mg at night
To summarise:
n Developed TB before ART- if CD4 is still above 200 will get TB treatment first
then will be assessed for ART after completing TB treatment
n If CD4<200 start TB treatment and complete 2 months of treatment before
starting ARV
n If patient has a low CD4 count of < 50 with serious HIV related illness complete
at least 2 weeks TB treatment before starting ART
All patients with one or more signs or symptoms must be investigated further for TB.
n
n
n
n
Children under 6 years should be tested with Tuberculin (Mantoux, Tine test)
2 Sputum samples must be collected for microscopy
1 Sputum Sample of Culture
Chest X-rays are only recommended for TB suspects with negative smears
Tuberculin skin test should be offered to all HIV-infected people. Patients with active
liver disease or alcohol abuse should be excluded because of potential hepatoxicity.
Patients who have had TB in the last 2 years should not be offered preventive therapy. If
treated for TB more than 2 years ago preventive therapy can be offered. Patients on ART
should not be offered TB preventive therapy.
TB preventive therapy is the use of one or more anti-Tuberculosis drug(s) given
85
Patients who are eligible for preventive therapy should be specifically asked about the
signs and symptoms of TB and other symptoms
– Cough > 2 weeks
– Fever > 2 weeks
– Night sweats (adults)
– Other symptoms such as pleuritic chest pains, coughing of blood
– Weight loss in the last 4 weeks
All HIV- positive people, with no signs and symptoms suggestive of active TB, with
positive tuberculin skin test, are eligible for TB preventive therapy. Patients with signs
and symptoms must be investigated. HIV- positive patients with no signs of TB but with
a negative tuberculin test should not be offered preventive therapy.
TB Preventive Therapy
n
To prevent giving one drug to patients who need the full regimen it is
fundamentally important that active TB is excluded before commencing
preventive therapy
PATA
PROCEEDINGS 2007
86
Recommended Regimen of Preventive Therapy (adult)
Adolescent care
• Isoniazid (INH) 5mg/kg/day ( maximum dose of 300mg daily)
• Duration of Treatment: 6 months
• Pyroxidine to prevent peripheral neuropathy should be part of regimen
A model for working with chronically ill adolescents. Licia Karp.
This model was developed in the renal and liver transplant services at the Red Cross
Children’s Hospital. Globally and locally, adolescents with chronic illness struggle with
adherence. There is a high rate of morbidity and mortality amongst adolescents with
chronic disease. This service attempted to create a service to reduce morbidity and mortality. In particular, help was needed with transitioning patients from paediatric hospitals
to adult hospitals without exacerbating their problems.
The following should be monitored and addressed on an ongoing basis
• Counselling including adherence counselling
• Screening for active TB ( Stop medication if active TB is detected and start full
TB regimen)
• Screening for Hepatitis ( Stop medication and refer if hepatitis is diagnosed)
• Treatment interruption ( Step up Adherence Counselling)
TB and ARV drugs can interact in ways that will either decrease the efficacy of ART
or will increase side effects. Decreased efficacy will result when the TB drug Rifampicin can decreases the blood levels of Nevirapine and Lopinavir by speeding up their
catabolism. If patient is on regimen 1 b it is recommended that Nevirapine be changed to
Efavirenz unless the patient is unable to tolerate Efavirenz, or if there is a significant risk
of pregnancy. If the patient is on regimen 2 an additional boost of Ritonavir is given in
addition to the normal dose of LPV/r.
Table 12: Shared side-effects
87
The first literature on transition literature appeared in 1984 and dealt with how the main
participants in care can help or hinder transition from paediatric to adult services. Transition must be planned and is needed for implementing critical steps to ensure successful
transition programmes. Timing should be individualised, transition should be proactive
and not linked to medical crisis.
Transitioning is most successful if the psychosocial stage of the adolescent serves as
the guiding priority. A designated health care professional is responsible for the process.
Adult health care services should be made more available to adolescents and young
adults with special health care needs. For successful transitioning to occur, there must be
a stream of continuous education for patients, providers and families regarding importance of developmentally appropriate and coordinated transition.
Side effects
ART
Tuberculosis treatment
Nausea
Didanosine, zidovudine,
pyrazinamide
Hepatitis
Nevirapine / Efavirenz
Rifampacin, Isoniazid, pyrazinamide
PeripheralNeuropathy
Stavudine, didanosine
Isoniazid
Rash
Nevirapine
Rifampacin, Isoniazid, pyrazinamide
Side effects
ART
Tuberculosis treatment
Nausea
Didanosine,zidovudine,
ritonavir, saquinivir
pyrazinamide
Hepatitis
Nevirapine / Efavirenz
Rifampacin, Isoniazid, pyrazinamide
Peripheral
Neuropathy
Stavudine, didanosine
Isoniazid
In stage 1, a family discourse and conversation regarding the future is encouraged: Plans
should be laid for education, employment and a social life.
Rash
Nevirapine
Rifampacin, Isoniazid, pyrazinamide
In stage 2, groundwork should be done to enhance the assumption of age appropriate
responsibility. Some suggest that this should begin during the pre-adolescent phase.
ritonavir, saquinivir
PATA
The care provider needs to define roles and should lead the transition process. There is
a higher transition success when the process is coordinated by someone who is not a
physician (cystic fibrosis). Paediatricians have concerns about adult care and adult care
providers possibly have concerns about unfamiliar medical conditions. But while all
agree that transition issues are important, there is little consensus as to when it should
happen.
This transition model proposes that this is a developmental process occurring in three
stages:
1. Envision a future
2. Encouraging increasing independence
3. Transitioning into full adulthood
PROCEEDINGS 2007
88
Some say stage 3 should be completed between the ages of 12 and 17 years, others say
between the ages of 18 to 23 years.
Families must be prepared, educated and included in the process, especially regarding
role changes. There should be more collaboration between paediatric and adult health
care providers. Paediatricians need to let go and adult health care providers must receive
summary reports from paediatricians regarding what has worked well with the patient
and family, physiologically and psychologically.
It has been suggested that ‘transition clinics’ should oversee slow transfer of care delivery. The patient is seen by both sets of health care providers in the transition clinic, then
by adult health care providers in adult setting.
The barriers to transitioning programmes include limited access to both paediatric and
adult providers, adequate funding and the criticism that transition programmes do not
achieve their aim of helping patients independently to navigate the health care system.
The working aim of care providers at Red Cross Hospital (RXH) is to support patients
to improve their self management, including their medical management, during their
process into full adulthood.
The RXH transitioning project has begun with monthly psychosocial meetings with the
RXH (paediatric) team and has recently started once monthly psychosocial meetings
with the Groote Schuur Hospital (GSH) adult team.
Three day workshops with 13-16 yr olds and 16-20yr olds have been held, focussing
on introducing patients to psychosocial processes and providing support regarding
adolescent concerns (including their chronic illness). At the adolescent clinic in the
adult hospital (GSH) there have been monthly groups for transitioned adolescents and
monthly groups for transitioned carers/parents.
A principle of the approach has been the idea that what I am familiar with, I can control
and that adds to my sense of safety and reduces my fear of morbidity and mortality.
Adolescent crises and sense of loss revolve around gaining competence and hope for
personal growth in relation to physical, cognitive, emotional and behavioural issues. If
these are not resolved, the result is low self esteem, lack of confidence, anxiety, depression and labile of mood.
This 3 level psychosocial therapeutic programme, delivered by existing and related
stakeholders to patients/carers aged 10-25 years has delivered the benefits of improved
self management and medical benefits at two hospitals resulting in a reduction of time
and expenditure: Social intervention assists performance and reduces the need for psychosocial support. This in turn prevents the need for or assists in access to psychiatric
support and intervention.
At level 1, the process involves a welcome to the adult service, a psychosocial booklet,
outings, talks and social activities, an adolescent friendly room/area and a formal farewell from paediatric service providers.
At level 2, the model provides support workshops, social groups with patients and
carers, pre-and post-transition workshops for patients and carers and consultation and
meetings with medical teams.
At level 3, psychiatric referrals are available for individual, group and family work;
pre- and post-transplant therapeutic (preventive) interventions are on offer and newly
diagnosed conditions are provided with preventive or therapeutic intervention.
Currently 59 renal transplant cases are being followed. Based on a clinical interview,
psychometric testing, collateral information, record review, clinical observation, out of
59 patients, 45.7% were diagnosed with a psychiatric disorder (40% girls, 58.4% boys).
Just over 30 % displayed adherence and/or social problems without a psychiatric disorder. In 28.8% either one or both parents had a confirmed psychiatric diagnosis.
Depression was by far the most frequent diagnosis, but other diagnoses included eating
disorder, conduct disorder, learning disorder, delirium, anxiety disorder personality
disorder, bereavement, drug abuse and gender identity problems.
Parents were diagnosed with depression, anxiety, personality disorder, drug abuse and
somatic disorder.
Since the RXH Renal Transplant Unit has been involved with the Consultation Liaison Unit and started the adolescent clinic at GSH patients have been transitioned with
greater care and there have been no deaths in 4 years. Patients have been satisfied with
the experience and some have enjoyed mentoring others through the process.
Indicators of transition difficulties include medical changes; weight loss/gain, behavioural signs such as acting out or withdrawal, passive aggressive behaviour, hostility,
sadness and resistance to intervention. The aim of the transition project is to provide
early and ongoing interventions that enhance the psychosocial coping
of acute and chronic illness/injuries in adolescents and young adults.
89
PATA
PROCEEDINGS 2007
90
1
PATA
PROCEEDINGS 2007
92
93
PATA
PROCEEDINGS 2007
94
Day 3 Plenary Session
Goals for the Peddie District are seen to be:
Presentation 1 Performance Measurement Quality Improvement and
Comprehensive Care Delivery in Hamburg. Carol Baker and Paul
Roux.
1. Improved identification of children with TB.
2. Identification of children exposed to TB.
3. Improved detection of children with HIV.
1. Screening and monitoring of CD4/VL.
2. HIV testing.
4. Treating those who need it (despite a loss of ARV access because of withdrawal of PEPFAR funds).
5. Retaining patients in care.
6. Continuity of care and treatment.
Over the past years there has been a considerable increase in the body of evidence
around paediatric HIV care, including:
- The development of clinical HIV guidelines specific to children by WHO and other organizations including ANECCA.
- Numerous studies have shown the effectiveness of ART in children both in developed and developing settings.
- Comprehensive packages of care have been defined by national governments.
- Experience in our clinics where we treat children has also shown us that when we do what we should, the results are nothing less than amazing.
But do we know if we are actually doing what we should be doing for HIV-exposed
and infected children? We know that HIV-infected children progress to morbidity and
mortality much more quickly than adults, but are we ensuring that all HIV-exposed
children are routinely tested at 6 weeks or as soon thereafter as possible to determine
whether they are infected and should be referred to ART? We know the effectiveness of
co-trimoxazole prophylaxis, but what proportion of HIV-exposed and infected children
are receiving this essential intervention?
We know that treatment of children living with HIV isn’t always easy – particularly for
those who have not had prior experience in treating patients with HIV, or those with
limited experience in taking care of children.
Hamburg is situated in the Peddie Health District, a rural part of the Eastern Province of
South Africa where the population lives in hilltop villages. Because of a lack of public
transport, continuity of care often depends on home visits, rather than service delivery
from a central clinic. There is a great deal of migration in and out of the region because
of limited local opportunities for work. While the clinical service does a great deal despite limited human resources, it acknowledges that it has ‘poor record-keeping skills’.
Key outcomes we want to achieve in respect of HIV/AIDS care, through implementation
of performance measurement and quality improvement are the following:
1. We want to improve identification of children and young people who are eligible for treatment through appropriate screening and monitoring of CD4 or testing of HIV-exposed and/or sick children who might be exposed.
2. We want to ensure that those children who are eligible for treatment receive it and receive it in a timely manner.
3. We want to ensure that our patients are retained in care and are not lost to follow
up. To do this we need to have mechanisms to identify those patients that have not returned for routine care and ensure that they are receiving the care they need at our
particular clinic or somewhere else.
In order to find the HIV-positive children in the District, we need to initiate clinic-based
awareness training and facilitate a link between PMTCT and PCR testing at 6 weeks. We
need to identify those with TB co-infection.
Our monitoring and evaluation should extend beyond counting, and should include
qualitative analysis. In the words of Claire Penn ‘we don’t just have data, we have
stories’. In order to achieve the system we need, the whole team should have ownership
of the M+E enterprise. M+E infrastructure needs to be a priority and the data capturer is
a V.I.P.
There has been a poor working relationship between different elements of the health service in the district. The hospital in Peddie, the district clinic sisters, the donor PEPFAR
and the clinic in Hamburg have not teamed up well.
Our HIV detection programme requires sensitising clinic staff to paediatric signs, training village health workers and opt-out testing at immunisation programme.
95
PROCEEDINGS 2007
PATA
We need to initiate annual TB screening.
• Numerator: number of HIV-infected patients screened in calendar year
• Denominator: number of HIV-infected patients seen at least twice during the
calendar year
96
Good performance indicators have the following in common:
1. They reflect national guidelines.
2. They are measurable, with a clear numerator and denominator (i.e. you can clearly identify who would constitute a “yes” and who a “no” in the process of counting.
For example, the proportion of HIV-infected patients seen at the clinic within the last year who were screened for TB. The denominator is all HIV-infected patients seen
at the clinic within the last year, and the number of those that were screened for TB would fall in the numerator.
3. Are either process or outcome measures. Process measures are those that measure whether an essential service was performed (such as TB screening) within the
specified period of time. Outcome may reflect the decrease in mortality among HIV-
infected patients at the clinic over the past 12 months.
4. Represent essential services for a large number of patients. We don’t want to use
a lot of time measuring the quality of services that impact only a very small number of patients. It’s better to focus on those services that are essential for a large number of patients in the clinic.
5. Related to #4 above, we want to measure services that should be provided to the majority of persons in a particular target group. For example, all HIV-infected
patients should ideally receive CD4 testing routinely.
6. We want to measure those things that we can do something about. For example, if we find that patients are not being screened routinely for TB (e.g. questions about cough, night sweats, appetite, etc.), that is something that can be easily implemented. However, if there is no capacity for viral load testing in the country, there isn’t much point in measuring what proportion of patients are receiving that as there isn’t any
thing that can be done about it.
7. Finally, we want to only measure a small number of indicators that are
representative of overall care within that area. We need to balance the amount of information we collect with the burden we impose on those collecting the data.
Our plan of action is as follows:
•
•
•
•
•
•
•
97
Design the project
Run an ‘integration workshop’ – involving all health care partners
– Define roles
– Share goals
– Establish teamwork
Plan the intervention
– Develop a work breakdown schedule
Allocate responsibilities
Develop a detailed M+E plan
Develop a financial plan
Write a funding proposal
To get started, we need to establish baseline data (Number of children currently known
with HIV and TB/HIV). In the design of our project we will identify what additional
resources will be needed (Vehicle to collect patients, Hand held computer/dictaphone to
take on home visits, Data collection form, IT training for data capturer)
A screening drive for TB will require a symptom checklist, training and sensitizing clinics and resources for radiography/TST/specimen collection.
A screening checklist for children under age three would include Cough, Failure to
thrive, Lethargy, Neck mass, TB contact.
In summary, we need to re-establish relationships with primary health services and the
hospital. To initiate the process, we plan to run a workshop with an outside facilitator
(PATA-stile), plan screening project, implement and compare pre- and post-data.
In summary performance measurement and quality improvement lends itself to several
advantages:
• Improves the quality of clinical services
• Builds capacity for measuring care and QI among healthcare workers
• Strengthens HIV QI infrastructure and documentation systems in HIV clinics
• Monitors implementation of national guidelines through benchmarking reports
• Identifies national priorities for policy and planning
Presentation 2 Team: Working together: addressing change. Diane
Melvin Member of the CHIVA/KZN partnership.
Dr Melvin began by making the following acknowledgements:
•
•
•
•
Colleagues in the CHIVA(UK) and KZN partnership ( Rollout of Paediatric ARVs) Dr Karyn Moshal, Dr Kimesh Naidoo, Juliet Houghton
Colleagues in Paediatric HIV Psychology Group (PHP) in UK
Colleagues in the MDT at the Family Clinic at St Mary’s Hospital and Great Ormond Street in London, UK
Special thanks to all the families and children living with HIV from whom she
had learnt so much
In order to deliver care to children with HIV/AIDS, one needs to follow certain basic
principles:
o Work together as a multidisciplinary team
o Have a family centred approach
o But address changing needs as children develop
PATA
PROCEEDINGS 2007
98
There are clear benefits to teamwork:
• Sharing knowledge provides better understanding and better care
• Communication is enhanced
• Children don’t come unattached nor do they stay the same over time
• The multi-disciplinary team provides opportunity to reduce the stress on
individual providers
These discussions are shared in partnership between caregivers and health professionals, including nurses, doctors, counsellors, social workers, psychologists. While parents
or other care-givers provide consistency and trusted care in child’s daily life, heath care
professionals provide up to date information and enable worries and concerns to be
voiced.
In the CHIVA model, the multi-disciplinary team consists of Coordinator, Paediatrician/
adult physician, Nurses in and out patient, Social worker, Dietician and Psychologist.
In the early 1990’s, there was little knowledge about HIV and children and no ARVs.
There were many inpatient stays (child and parent). Mostly children were under 3. There
were many illnesses and deaths. There were few older children (long term survivors) and
many cultural and practical issues to be dealt with.
Support for the child was mainly via the care-giver and concentrated on managing
illnesses. There was some preparation for loss and death. Addressing care needs was a
priority. Services were mainly delivered in specialist centres, with little sharing.
Children’s needs change as they grow into adolescence. During the mid-1990’s, patients
were getting older, many were on ARVs. There was less illnesses & deaths and the quality of family life increased. More vulnerable and compromised children were growing
up. There was more consistent care and children growing up wanted to be included and
involved in their own care.
The multi-disciplinary service was becoming more confident. Care was still family
based but dealing with life issues as well as with health. It was mostly outpatient based,
but had partners in local health services and community. It was learning approaches to
address children’s understanding, developmental needs and long term adherence.
The following are useful hints in shaping conversation with children:
• Children often understand more than adults think they do
• Have resilience to cope, more confused if not included
• Can keep information safe if told how to
• Clarify
• Who knows and who I can safely talk to...
• Who doesn’t need to know...
• Avoid use of the term ‘secret’
• (Maybe private information or family business is more helpful?)
Figure 19
Social- ecological model to health and living
religion
culture
New partners in care now included a pharmacist, occupational therapist, speech and
language therapists and links with community services.
Social
networks
Peers
A continuous process of conversations explicated diagnosis, facilitated open discussion
and created insight into how the meaning of illness was evolving for the growing child:
The content of ongoing conversation includes:
• What happens at the clinic
• How to keep well
• The blood test – a measure of health
• Different cells in blood: good cells. Role of CD4’s for health
• Health under attack – bad cells, talk about baddies, viruses
• Medicines help protect the good cells (fighter cells, CD4’s etc) from damage health
99
In children aged 5 to 10 years, conversations are about health and keeping well. Medicines are seen as helpers. In children 10 to 12 years old, open conversations are held
about HIV and its effects on the child at present and in the future. There is discussion
about shared responsibility for taking medicines. In young people aged 13 to 17 years,
conversation turns to sexual health, transmission routes, independence and responsibility
and self management of medication.
PATA
Parent/carer
Family Siblings
Health
staff
Friends
hospitals
technology
PROCEEDINGS 2007
Community
Neighbourhood
CHILD/YOUNG PERSON
Illness
laws
status
School
Wider Family
Church
Attitudes/
beliefs
traditions
100
Adolescent numbers are increasing. In the CHIVA practice, 50% of patients are now 10
years or older. Some are showing signs of longer term effects of disease and treatment,
both in growth and appearance. Their responses to disease and treatment are complicated by their immaturities and difficulties with emotional, learning and social matters.
They are passing through the adolescent battle with identity and independence and they
encounter the ‘normal’ conflicts with family. Many face an uncertain future in respect of
education, employment and relationships.
The multi-disciplinary team must respond with new emphasis, as a family approach with
some individual focus. Letting go is a process for both team and young person. The team
needs to learn how to support developing independence; to answer questions about who
manages sexual health, when and how there should be transition to adult services, whether
there is a need for wider disclosure and clarification about who is providing support to the
young person and the care-givers. There are more new team members and new partnerships
(peer groups, mentors, role models) and a need to learn from other chronic conditions.
Adolescents growing up with HIV have a number of challenges:
• Managing ordinary changes during adolescence
• Vulnerability of living with a chronic illness and treatment demands
• Coping with a sexually transmissible condition
• Dealing with stigma, secrecy and family impact
The condition
or illness
Temperament age,
needs
The
Treatment
Task
Child
Development of individual knowledge about the disease is characterized as
Adherence
Previous experiences &
• Empty : little or no specific knowledge
‘I go to the hospital for check up’
‘Something is wrong with me’
‘I have to take medicines to keep well or strong’
‘There’s something wrong with my blood’
Explanations
Available support
Wider
System
A family HIV Service has the following structure and staff
Co-ordinator
Nurses: adult and child trained
Doctors – paediatricians & adult physicians
Pharmacist
Dietician
Psychologist
Physiotherapist
Social worker
CHIVA has become part of the KZN wider partnership and helps with strategies for
medicine giving, developing resources (information posters and picture/stories about
how medicines work), work on developmental screening – picking up problems early,
support for the supporters, groups, helping think of future and transitions and most of all
sharing our confidence.
Life threatening stigmatising
Frequency, effects
At present, the CHIVA service manages transition from paediatric to adult services
through the multi-disciplinary team. They follow a process where children aged 10 to
12 are engaged in discussion and disclosure about their illness, and children aged 12 and
older are seen in an adolescent clinic. In the adolescent clinic, young people will see a
paediatrician and will be introduced to the adult care team. Local adult services provide
care to more than 900 young people between the ages of 16 and 18 years.
In KZN, there are much bigger numbers because 30- 40% of the childhood population
has HIV. More recently, there has been access to ARVs for more than 10,000 persons.
There is a multi-disciplinary team and CHIVA has partnerships in specialist centres and
primary health clinics. There are children at all points-in infancy, in the growing years
and a few young adolescents.
Figure 20: Adherence: Psychosocial influences
Size, number, colour,
Managing and delivering health care means managing the ordinary changes associated
with adolescence, dealing with the vulnerability of dealing with a chronic illness, coping
with a sexually transmissible illness, stigma, secrecy and family impact.
Parent/carer/
Family
Carer strengths and
weaknesses
Vulnerabilities
Communication style
Attitudes & beliefs
101
PATA
PROCEEDINGS 2007
102
Appendix A
Conference Gridof tasks elected by teams: Summary by Category
• Half full: Partial knowledge
‘I need medicines to help support my blood’
‘my good cells (CD4 cells) can’t fight infections’
‘The baddie in my blood is called a virus’
‘Viruses are clever baddies and won’t go away but medicines keep it quiet’
• Full knowledge: open naming of HIV
The name of the disease is HIV
Category of task
Teams who selected tasks in this category
for implementation
VCT Football event/ soccer activities
Princess Marie Louis (Ghana), Rustenburg
(SA), QEII (Lesotho)
Expert Patient Programme
Harare Children’s Hospital(Zimbabwe),
Songea (Tanzania), Oshikuku (Namibia),
KNH (Kenya), Kakamega (Kenya), Osindisweni (SA), Paarl (SA), Umphumulo (SA),
Connaught (Zim), QEII (Lesotho), Baylor
(Botswana), MRC (Uganda), KilgorisTransmara (Kenya), TASO (Uganda), Mbeya
(Tanzania), Nkhata Bay (Malawi)
Memory Box introduction
Harare Children’s Hospital(Zimbabwe),
FACES (Kenya)
TB: Introduction of Scoring system
for TB diagnosis/ Collaboration of TB/
HIV, Counselling for TB, strengthening
DOTS system, contact tracing
Harare Children’s hospital(Zimbabwe), Songea (Tanzania), Worcester (SA), Hamburg
(SA), Dora Nginza (SA), Baylor (Swaziland), Emkhuzweni (Swaziland), Baylor
(Botswana), FACES (Kenya), KilgorisTransmara (Kenya), TASO (Uganda), Mbeya
(Tanzania)
Alice Nyiramana (PIH, Rwanda)
Claire Penn (University of the Witwatersrand)
Jenny Altschuler (formerly from the Tavistock Clinic, London)
Funding proposals/
engaging stakeholders
Harare (Zim), Rustenburg (SA)
Dr Melvin’s presentation was followed by a round table discussion in which experts
demonstrated flexible communication styles around problems encountered in everyday
practice.
Technical & Admin/ Computer installations/ Upgrades to facilities/ Booking
systems/ stock-taking/ Clinic flow
Participants then proceeded to workshop sessions in professional groups. This was
followed by the PATA ‘marketplace’, an opportunity for teams to showcase special
projects.
Harare (Zimbabwe), KNH (Kenya),
Osindisweni (SA), Umphumulo (SA), Baylor
(Swaziland), Livingstone (Zambia), QEII
(Lesotho), Kilgoris-Transmara (Kenya),
Mbeya (Tanzania)
Caregiver support and education
Songea (Tanzania), Oshikuku (Namibia),
KNH (Kenya), Kakamega (Kenya), Osindisweni (SA), Rustenburg (SA), Tygerberg
(SA), Paarl (SA), Connaught (Zim), QEII
(Lesotho)
Communication and comprehension are enhanced by building narratives with illustrations about the child and health, about the role of medicines, about a visit to the clinic,
about how the medicines and CD4 cells work together to protect the body. A bead chain
can be constructed to keep memories of events and one’s family.
Pictures can illustrate sources of help and contact numbers.
Children benefit from drawing their own ‘trees of life’:
•
•
•
•
•
Roots - origins, special things from the past
Ground – present place, where you are now
Trunk – skills you have, things that make you an individual
Branches – hopes and plans for the future
Leaves – people in your life
It is important to realise that development is never done: Keep growing and changing
with your team
Round Table presentation: Calls from everyday practice
The afternoon workshop in teams each day gave each clinic an opportunity to frame
plans for tasks they could take on in the course of the next PATA year. A summary of
tasks taken on is presented here
103
PATA
PROCEEDINGS 2007
104
Nutrition
Songea (Tanzania), Oshikuku (Namibia),
Connaught (Zimbabwe), QEII (Lesotho)
Adolescent Programme, peer support
groups, youth-friendly service, career
guidance for adolescents
Worcester (SA), Princess Marie Louis (Ghana), Harare Children’s Hospital(Zimbabwe),
KNH (Kenya), Kakamega (Kenya), Tygerberg (SA), Uitenhage (SA), Dora Nginza
(SA), Dvokolwako (Swaziland), Paarl (SA),
Baylor (Swazi), Baylor (Swaziland), Emkhuzweni (Swaziland), Livingstone (Zambia), Baylor (Botswana), FACES (Kenya),
TASO (Uganda), Kiwoko (Uganda)
Income generating project
Worcester (SA), Paarl (SA)
Team well-being/ managing stress/
team-building exercises, regular staff
meetings and multidisciplinary teams
Oshikuku (Namibia), Kakamega (Kenya),
QEII (Lesotho), Songea (Tanzania), MRC
(Uganda), Kiwoko (Uganda)
Referrals
KNH (Kenya)
Gardening Project
Kakamega (Kenya), Dora Nginza (SA)
Community involvement in care/
Community outreach
Kakamega (Kenya), Nkhata Bay (Malawi)
PCR testing
Osindisweni (SA)
Adverse drug reaction reporting
Osindisweni (SA)
HIV testing for all patients (opt out)
Osindisweni (SA)
Meeting with local authorities
Hamburg (SA), Dora Nginza (SA)
Links with schools
Hamburg (SA), Rustenburg (SA), Dvokolwako (Swaziland), Connaught (Zimbabwe)
Narrative research plan
Hamburg (SA)
Play area / Child-friendly services
Rustenburg (SA), MRC (Uganda), Mbeya
(Tanzania), Nkhata Bay (Malawi)
105
Staff training
Tygerberg (SA), Uitenhage (SA), Dora
Nginza (SA, Connaught (Zimbabwe),
QEII (Lesotho), FACES (Kenya),
Kilgoris-Transmara (Kenya)
Infection control measures
Tygerberg (SA)
Staff recruitment
Uitenhage (SA), Livingstone (Zambia)
Integration of HIV services
Uitenhage (SA), Umphumulo (SA),
Kilgoris-Transmara (Kenya)
M&E
Baylor (Swaziland), Baylor (Botswana)
Procure new boat!
Nkhata Bay (Malawi)
Participant comments about PATA 2007 in Swaziland:
From one of the guest speakers: “I think PATA has grown into a fantastic conference /
workshop, truly an asset to the HIV infected/affected and treatment community. Thank
you for your tireless efforts! … At risk of sounding clichéd, Good luck with the next one
and Viva PATA Viva”
From a first time attending team in Zimbabwe: “We are deciding to transfer the
'PATA' effect by trying to get all our Government sponsored teams from the different
hospitals together in Harare to learn from each other's experience. We will need to get
someone to sponsor this from our Ministry of health... not easy to do, but we will try
anyway. We were very grateful for the wonderful time we had in Swaziland, and all the
effort you put in to make it a success.”
From Burkina Faso: “Encore une fois merci à vous et à toute l'équipe de pata pour
avoir permis à des personnes d'horizons diverses, tous engagées dans la lutte contre le
VIH/SIDA chez l'enfant et chez l'adolescent de venir sur un même plateau partager les
expériences. Je puis vous rassurer que ce rendez-vous unique (du donner et du recevoir)
que pata nous offre nous enrichit à plus d'un titre.Nous avons beaucoup apris et nous
comptons mettre cela au service de nos enfants pour qui le destin et la fatalité tracent
"des chemins qui ne mènent pas toujours à Rôme". Merci une fois de plus et que DIEU
bénisse pata et toute son équipe.”
(Once again thank you and the rest of the PATA team to allow people from various
places, committed to fight against HIV/AIDS among children and adolescents to come
PATA
PROCEEDINGS 2007
106
together and share experience. I assure you that this unique opportunity (give and take)
that PATA offered to us will improve our activities greatly. We learnt a lot and we hope
to put all we learnt into practice in order to offer better service to the children we serve
whose fate and mortality create "roads that do not always lead to Rome ". Once again
thanks and may God bless PATA and his team.)
From a first-time attending team in KZN South Africa: “All the team members enjoyed a lot the Congress and helped them to exchange experiences with the other teams
in Africa. Also it helped all the members to work as a team and achieve success at work
place and confront challenges… Thank you PATA for an educational conference that
allowed us to interact with the rest of Africa”
From Malawi: “I must thank you so much as well for the entire conference, its arrangement and contents were just superb. We hope to entice more members from clinics in
Malawi at the next PATA conference.”
From the nursing sister in the host team in Swaziland: “Thank you once more for
considering Swaziland as host country this year, the meeting was great, well organized
and highly informative.”
Cette note de l'équipe de Cote d'ivoire pour vous dire que nous sommes bien arrivé.
Nous sommes à Abidjan depuis hier après-midi. Je profite de cette occasion pour dire
un grand merci à toute l'équipe de PATA et surtout à toi Mélanie qui a tout fait pour que
nous assistions encore une fois à cette belle rencontre annuelle d'échange sur le VIH/
SIDA. Pour l'organisation, elle a été parfaite.
(This is a message from the Ivory Coast Team to let you know we arrived safely. We are
in Abidjan since yesterday afternoon. I take this opportunity to thank the whole PATA
team and specifically you for helping us attend this very fruitful annual conference about
exchange of ideas and experience on HIV/AIDS. It was perfectly organized)
From Rwanda: “Thank you for everything. I thought it was a huge success and my
team had a fantastic experience.”
From Zimbabwe: “We are always encouraged, inspired and motivated to greater
heights after PATA. Thank you for all your hard work, you are AMAZING!!”
From Kenya: “On behalf of my team, thanks for every organization. That was indeed
exemplary and thanks for that. Thanks too for your concern in everything during and
after the conference. I hope you will be even more stronger for greater assignments in
future. We hope to see you soon even before PATA 2008. Pass regards to David and
everyone. We will miss you!”
From Lesotho: “Well done! I am very proud of you and your team. Keep it up.”
From Tanzania: “We really appreciate for all the arrangement. The conference had
added value to us and surely will solve some of the problems in our setting. Our way
back was safe and enjoyable. PATA long live.”
From a nurse in South Africa: “May PATA go from strength to strength”
From a Clinton Foundation representative about what one of the Mozambican
teams have learnt from the conference: “I have already heard from our psychologist
that he learned new tools for working with adolescents.”
From a nurse in Namibia: “We got to share and hear what other people do. If it was
not for PATA, unification of activities in the field of HIV would not be possible”
107
PATA
PROCEEDINGS 2007
108
Evening 27th November
Academic Programme and Speakers
for PATA Forum 2007
Gala Dinner 8pm
Manzini, Swaziland.
27th November – 1st December
Welcome address:
Mr Njabulo Mabuza (Swazi Minister of Health and
Social Welfare) introduced by
Busi Bhembe (Baylor Swaziland)
Keynote speech:
Joia Mukherjee (PIH) introduced by
Paul Roux (PATA)
Team introductions:
David Altschuler (PATA)
109
PATA
PROCEEDINGS 2007
110
Programme Grid for PATA 2007 Forum
Day 1
Day 2
Wednesday 28th Nov
Thursday 29th Nov Friday 30th Nov
07:00 – 08:00 Breakfast
Breakfast
28th November
Day 1 Performance : Feedback on Projects, Monitoring & Evaluation of progress
Day 3
8:00- 9:35
Breakfast
Paul Roux (Kidzpositive)
& David Altschuler (One to
One Childrens Fund)
08:00-09:25
Morning Plenary
Morning Plenary
09:25- 09:35
Brief Break
Brief Break
09:35-10:30
Plenary Continued
Plenary Continued
10:30-10:45
Morning tea in breakout venues
Morning tea in
break-out venues
10:45-12:30
Workshop 1 in
Professional Groups
12:30-13:30
Lunch
Workshop 1 in Pro- Workshop 1 in Profesfessional Groups
sional Groups
13:30-15:00
Workshop 2 in Treatment Teams within
Regional Groupings
Workshop 2 in
Treatment Teams
within Regional
Groupings
15:00-15:30
Afternoon tea outside
plenary Venue
Afternoon tea outside plenary venue
15:30-17:00
Afternoon plenary
Afternoon Plenary
17:30-19:30
Parallel Masterclasses
TB/HIV & The
Adolescent
08:00 onwards Dinner
Morning Plenary
Brief Break
Plenary Continued
8:40 - 9:35
From PATA HQ:
Process and Progress
From the Field:
Achievements & Challenges
Morning tea in break-out
venues
Sara Stulac (PIH, Rwanda)
Lunch
Charles Munthali (Nkhata
Bay, Malawi)
From the Side of the Lake
Robert Gass (UNICEF)
& Carol Baker (Keiskamma Health, Hamburg)
Quality Assessment
An example from the real world
10:20 – 10:30
Stephen Rollnick (University of Cardiff, Wales)
PATA 2007: The Next Three Days
Afternoon Tea outside
plenary venue
(16:15-16:30)
10:45 – 12:30
Workshop I in Professional
groups
Parallel Masterclasses TB/HIV &
Afternoon Plenary
(16:30-18:00)
1:30 – 3:00
Workshop II in Treatment
teams
Dinner
Dinner
3:30 – 5:00
Lunch
The PATA Market place
Workshop 2 in Treatment
teams (15:00-16:15)
Busi Bhembe (Baylor
Swaziland)
9:45 – 10:20
The Adolescent
Simultaneous interpreting available in French, Portuguese and English throughout
the 2007 PATA Forum
5:30 – 7:30
8pm
111
Morning Plenary:
PATA
PROCEEDINGS 2007
Afternoon Plenary
Parallel Masterclasses:
Shelley Horwitz, Lisa
Karp, Donna Futterma
Ben Marais, Helena Rabie,
James Nuttall
Our Expert Patient Programme
A Swazi Experience
Introduction by facilitator
Small group work
Mini-plenary
Introduction by facilitator
Work in teams
Mini-plenary in regional groups
Panel of observers
Team stories
Open Forum
Masterclass Ia The Adolescent
Masterclass Ib TB/HIV
Dinner and Guest Speaker
Chewe Luo (UNICEF)
112
Day 1 Workshop Questions
29th November
Day 2 Priorities: The Adolescent & Tuberculosis and HIV
Workshop I (Profession):
Small Groups
1.1 What’s worked well for you in the team and in the service this last year?
1.2 What were the main challenges?
Mini-Plenary in professional groups
1.3 What are your main concerns as a profession?
1.4 What strategies work best to overcome these challenges?
8:00 – 9:15
TB/HIV Plenary:
Ben Marais
(Ukwanda Centre, University of Stellenbosch)
Workshop 2 (Teams)
In Teams
2.1 What have we heard about in our professional groups of the achievements of other
teams?
2.2 What would we like to attempt in our own team for the next PATA year? Implications for the team grid.
Mini-Plenary in regional groups
2.3 Be brave with ‘What went well’
TB Infection Control
Preventative Chemotherapy
Helena Rabie
(Tygerberg Children’s Hospital, University of Stellenbosch)
TB/ HIV Drug Interactions
James Nuttall
(Red Cross Children’s Hospital, University of Cape Town)
9:25 – 10:30
The Adolescent Plenary:
Licia Karp (Dept of Child & Adolescent Adolescents and their Care:
Psychiatry, Red Cross Children's Hospi- Personal, Provider, and
tal, University of Cape Town)
Psychiatric Considerations
Donna Futterman, (Albert Einstein College of Medicine, New York)
Renee Nassen (Dept of Child & Adolescent Psychiatry, Red Cross Children's
Hospital, University of Cape Town)
Des Michaels (School of Child & Adolescent Health and Dept of Public Health
& Family Medicine, University of Cape
Town)
113
PATA
10:45 – 12:30
Workshop I in Professional Groups
1:30 – 3:00
Workshop II in Treatment teams
3:30 – 5:00
Plenary
Panel of Observers
Team Stories
Open Forum
5:30 – 7:30
Parallel Masterclasses:
Shelley Horwitz, Lisa Karp, Donna
Futterman Ben Marais, Helena Rabie,
James Nuttall
Masterclass IIa The Adolescent
Masterclass IIb TB/HIV
8pm
Dinner followed by a Movie
‘Keiskamma: A Love Story’
PROCEEDINGS 2007
114
Day 2 Workshop Questions
30th November
Workshop 1 (Profession)
Workshop 1a The Adolescent
1.1 Through the eyes of your professional group, how do you feel about the way you
help The Adolescent? What would help too improve your service?
Workshop 1b TB/HIV
1.2 Through the eyes of your profession, what is the impact of TB on your service?
What would help to improve the service?
Workshop 2 (Teams)
2.1 Looking back on plenary talks, master classes and this morning’s workshops, how
might our team improve its service for children with TB/HIV and The Adolescent?
115
PATA
Day 3 Professional Development :
The Functional Team & Setting Realistic Goals and Tasks for the Next Year
8:00-8:30
Plenary: Stephen Rollnick
(University of Cardiff, Wales)
Communication styles: More
flexible, better for health
Calls from everyday practice
8.30 – 9.35
Alice Nyiramana, (PIH, Rwanda) From our service
From our hearts: In conversation
Claire Penn (University of
with practitioners
the Witwatersrand) and Jenny
Altschuler (Consultant family
psychotherapist/ Clinical director
One to One Children’s Fund)
9.45 – 10.05
Diane Melvin (CHIVA)
Growing up together in teams
10:05-10:30
Robert Gass (UNICEF) in
conversation with Carol Baker
(Hamburg Clinic)
Our Action Plan for Next Year
10:45 – 12:30
Workshop I in Professional
Groups
Introduction by facilitator
Individual tasks
Small group work
Mini-plenary
1:30 - 3:00
PATA Marketplace
3:00 - 4:15
Workshop II in Treatment Teams
In teams
4:30 - 6:00
Plenary
Panel of observers
Team Stories
Open Forum
8pm
Boma Dinner with Entertainment
PROCEEDINGS 2007
116
Day 3 Workshop Questions
Session Information
Workshop 1 (Profession):
Alone
1.1 Look at the examples on the sheet. How has this affected you?
1.2 Do you tend to get too close to the problem, back away, or what?
1.3 What do you think might be helpful to you?
Small Groups
1.4 What have you found helpful in coping well with different challenges in patient
care?
Mini-plenary
1.5 What strategies can we adopt to ensure that we not only survive, but thrive?
Session 1 (morning plenary)
Session 1 will comprise of presentations by faculty members, leading practitioners and
thinkers, setting the tone and agenda for the day.
Session 2 (morning workshop)
During session 2 workshops professionals from the same disciplines (pharmacists,
nurses, counsellors and clinicians) will be divided into teams to work on the set tasks.
Following this, still within their professional grouping, the small groups will provide
feedback to their professional group within a mini-plenary. Facilitators will assist teams.
Question 2 (Teams)
2.1 What tasks are worthwhile and achievable?
2.2 Complete grids with the mentors, choosing process and outcome indicators
2.3 Draw up timelines for progress on tasks
2.4 Personal commitment to specific tasks
Session 3 (afternoon workshop)
In the session 3 workshops, members of all four disciplines will meet in their original
treatment teams of 4 in regional groupings. The team member from each profession will
present the morning’s input to his / her team. The team will then answer the workshop
question(s).
1st December
Session 4 (afternoon plenary)
World Aids Day
08:00 – 9:30
Breakfast Session
Press and Media session
Chaired by David Altschuler
Reflections and thoughts on the
strategic role PATA can play in
the future
During the afternoon plenary, selected participants and observers will provide workshop
and mini-plenary feedback to the whole audience.
Sharing in Plenary Sessions
A whiteboard will be placed at the front of the main plenary venue for teams to sign up
on should they wish to share their learnings from a particular day within the main afternoon plenary sessions. Presentation time will be restricted to a maximum of 3 minutes
each for 5 teams per day. This whiteboard will be available from lunch time each day.
Each team will be allowed 1 opportunity to share in the main plenary. For ease of translation, a script of the presentation needs to be drafted by afternoon tea time.
Commemorating World Aids
Day
Masterclasses
The Masterclasses will be highly interactive, learning focused workshops concentrating
on specialist areas, led by recognised leaders in that field. This year there will be two
streams of masterclasses, focusing on TB/HIV and The Adolescent with two consecutive
masterclasses each. These will be held on the evenings of Day 1 and Day 2. Participants
who sign up for the masterclasses, will attend both sessions for their respective topic.
117
PATA
PROCEEDINGS 2007
118
PATA Market Place
PATA 2007 Francophone Clinic Teams
The PATA marketplace on Day 3 is an opportunity for teams to showcase exciting activities in their clinic and to share experiences so that clinics can learn from each other and
be inspired to embark on new projects in their own clinics. Brief presentations from
participants will be followed by 15 minutes of discussion time.
Clinic Team
Confirmed Market Place Presentations
Pédiatrie CHU Yopougon, Abidjan
Nationale de Soutine aux Seropositifs et Sideens (ANSS), Bujumbura
Centre Mère et Enfant Fondation Chantal Biya, Yaounde
CAP/ Heal Africa, Goma
Kate Gray
(Kidzpositive, SA)
Income Generation
Jenny Watermeyer &
Claire Penn
(Wits University, SA)
Communication
Dr T G Prithiviraj
(QE II Hospital, Lesotho)
Volunteerism
Challenges and constraints facing volunteerism
Tumie Maneli
Grassroots Soccer
E Cape Football Project
Nonkosi Ndolosi
Gardening Project
PE Gardening Project
Clinics participating in the Expert Patients
Expert Patient Pilot (EPP)
Programme
CHUSS/ Rev+, Bobo-Dioulasso
The Positive Beadwork Project
Partners in Health, Kirehe
Communication skills training
for ARV pharmacists
TRAC/ Lux-Development, Kigali
Partners in Health, Rinkwavu
Country
Burkina Faso
Burundi
Cameroon
Côte D’Ivoire
DRC
Rwanda
Rwanda
Rwanda
PATA 2007 Lusophone Clinic Teams
Clinic Team
Country
Nampula Pediatric Day Hospital
Mozambique
Beira
Mozambique
PATA 2007 East African Clinic Teams
Successes/ Challenges of the
EPP Programme
Clinic Team
FACES Kisumu and Suba district hospitals
Kakamega Provincial Hospital
Additional teams wishing to present on Day 3 in the PATA Marketplace, are
welcome to sign up to do so at the forum.
Kenyatta National Hospital (KNH), Nairobi
Ministry of Health, Kilgoris, Transmara
Mbeya Referral Hospital
Songea CTC
Joint Clinical Research Centre (JCRC), Entebbe
Kiwoki Hospital
Medical Research Council Uganda, Entebbe
The Aids Support Organisation, Mbarara
Country
Kenya
Kenya
Kenya
Kenya
Tanzania
Tanzania
Uganda
Uganda
Uganda
Uganda
PATA 2007 West African Anglophone Clinic Team
Clinic Team
Pincess Marie Louise Hospital
119
PATA
PROCEEDINGS 2007
Country
Ghana
120
PATA 2007 Clinic Teams from Southern and Central Africa
Clinic Team
Country
Queen Elizabeth II Hospital, Maseru
Lesotho
Baylor College of Medicine Children’s Centre of Excellence
Ministry of Health, Nkhata Bay
Catholic Health Service, Oshikuku
Baylor College of Medicine
Dvokolwako Health Centre
Emkhuzweni Health Centre
Livingstone Paediatric centre of Excellence
Connaught Clinic
Harare Children’s Hospital
PATA’s Mission, Vision and Values
MISSION: PATA is an organization of individuals dedicated to expanding access to care
for children affected and infected with HIV and their families throughout the African
continent. PATA values and promotes models of care that address both the medical and
psychosocial needs of the child and that offer high quality, integrated, patient-centred,
and affordable services. The organization will work collaboratively with healthcare
teams, serving as a resource to support achievement of their stated goals. PATA will
facilitate the development of local capacity for high quality HIV care through promotion
of learning through team work, sharing of experiences, and spreading of good practice.
Botswana
Malawi
Namibia
Swaziland
Swaziland
Swaziland
VISION: The vision of PATA is for all HIV-infected and affected children in Africa
to have access by 2015 to comprehensive, high quality health services including ART.
PATA believes that this can best be achieved by supporting committed health care providers to enhance, expand and extend their work to impact others through a ripple effect
in the community (the ‘PATA effect’).
Zambia
Zimbabwe
Zimbabwe
PATA 2007 Clinic Teams from South Africa
Clinic Team
Groote Schuur Hospital, Cape Town
Tygerberg, Cape Town
Idas Valley, Paarl
Worcester
Dora Nginza, Port Elizabeth
Keiskamma Health, Hamburg
Uitenhage Privincial Hospital
Rustenburg Provincial Hospital
King George Hospital
Osindisweni Hospital
Umphumulo Hospital
121
Area
Western Cape
Western Cape
Western Cape
West Coast/
Winelands
Eastern Cape
Eastern Cape
Eastern Cape
Mpumulanga
KZN
KZN
KZN
PATA
APPROACH: PATA believes in the principle of developing sustainable interventions
that are linked to, rather than in parallel with the work of government and other partners.
PATA works to extend the horizons of care for each of its affiliated clinics by encouraging Treatment Teams to network with each other through annual meetings, a newsletter
and the PATA website. This enables PATA teams to share learning and experience and
ultimately develop their own visions for health care improvement.
PATA also supports Treatment Teams to reach out to neighbouring clinics and other
partners to improve quality of care and extend the ‘PATA effect’ through leadership and
mentoring.
FOUNDATION AND PURPOSE: The foundation of PATA lies with the PATA teams –
multidisciplinary Treatment Teams of nurses, pharmacists, counsellors and doctors, who
work together at clinics across Sub-Saharan Africa to form a community of compassionate and committed individuals who provide treatment and care to children infected with
HIV and their families.
The fundamental purpose of PATA is to assist Treatment Teams to improve the quality
of health care they deliver to their patients.
The principle of PATA lies in the belief that Treatment Teams can best improve
themselves,(collectively and individually) and the quality of their work through selfinitiated projects in which they have a sense of ownership, responsibility and pride.
PROCEEDINGS 2007
122
PATA Steering Committee
2007 PATA Forum Organisation
PATA is led by David Altschuler, Co-founder of One to One Children's Fund and Dr.
Paul Roux, Paediatrician and Co-founder of the Kidzpositive Family Fund and supported by a steering committee of leading thinkers and practitioners in the HIV/AIDS
field.
Chair: Conference Organiser-in-Chief:
Programme Coordinators:
Executive officers:
Secretariat:
Programme Consultants:
L’equipe PATA:
Interpreting and Translation:
The Steering Committee:
David Altschuler, Chair of One to One Children's Fund, United Kingdom
Paul Roux, Paediatrician, School of Adolescent and Child Health, University of Cape
Town
Jennifer Altschuler, Family Psychotherapist, Kingdom
Stephen Rollnick, Professor of Healthcare Communication, Cardiff University, Wales
Henry Karyaija Barigye, Medical Research Council, Uganda
Sara Stulac, Paediatrician, Partners in Health, Rwanda
James Nuttall, Paediatrician, School of Adolescent and Child Health, University of
Cape Town
Elizabeth Obimbo, Paediatrician, Kenyatta National Hospital, Nairobi
Shaffiq M Essajee, Paediatric HIV/AIDS advisor Clinton Foundation, Assistant Professor of Paediatrics, Department of Infectious Diseases, New York University School of
Medicine USA
Gertrude Guveya, Nursing Sister, Mildmay Clinic,Harare, Zimbabwe
Dr Telahun Teka, Paediatrician, Department of Paediatrics and Child Health, Ethiopia
Dr Paul Cromhout, Managing Director, Small Projects Foundation, South Africa
Robert Gass, Project Officer for Paediatric HIV Care Support and treatment UNICEF
Strategic Partners
Clinton Foundation
Partners in Health
MAC AIDS
American Jewish World Service
One to One
Sidaction
Baylor Swaziland
Kidzpositive
Miracle Corners of the World
UNICEF
Primary Sponsors
For more information about PATA, and to subscribe to the monthly PATA newsletter,
please visit our website www.teampata.org or contact the PATA secretariat.
123
David Altschuler
Melanie Evans
Paul Roux, Stephen Rollnick, Melanie Evans
Sara Stulac, Busi Bhembe
Annji Lee, the Foundation for Professional
Development (FPD)
Shelley Horwitz, Ben Marais
Toast Coetzer, Megan O’Reilly, Ludwig Mugrauer, Jenny Watermeyer, Joanne Barret, Virgile Mahoro
Nadia Topalova, Ivette Jeichande, Isabel Catalano, Catherine Jele, Muteba Kasanga
A special thanks to Aurum, Synchronicity and the Elma Philanthropies for their
continued support.
PATA
PROCEEDINGS 2007
124