The DAWN™ website provides a meeting point for DAWN™ stakeholders
and features the latest news about DAWN™ initiatives and actions
around the world. To find useful information about the study results,
inspiring video testimonials, DAWN™ tools and publications, please visit
dawnstudy.com
Novo Nordisk A/S
Novo Allé
2880 Bagsværd
Denmark
Tel +45 4444 8888
novonordisk.com
DAWN™ 10 YEARS: LESSONS LEARNED AND THE WAY FORWARD
MORE INFORMATION
DAWN™ 10 YEARS: LESSONS LEARNED AND THE WAY FORWARD
2 TIMELINE
TIMELINE 3
MILESTONES FOR DAWN™
DuRINg THE LAST 10 YEARS
2001
2002
2003
2004
2005
2006
2007
2008
2009
2010
2011
• The DAWN™ study
carried out covering
13 countries and
qualitative focus
groups undertaken
in 8 countries.
• 1st DAWN™ Summit in
Oxford: Release and
discussion of the multinational DAWN™ study
results.
• 2nd DAWN™ Summit
in London. Participants
from 33 countries
and multiple partner
organisations convened
to develop the global
DAWN™ Call to Action.
• First global DAWN™
Nurse Dialogue
Event in Israel with
participation of
280 diabetes nurse
specialists from 18
countries.
• A special issue of
Diabetes Voice on
DAWN™ published by
IDF and distributed to
stakeholders in 160
member countries.
• 3rd International
DAWN™ Summit
in Florence as a
partnership with the
Therapeutic Patient
Education (TPE)
Congress: setting
the stage for the
implementation of
practical and research
oriented initiatives.
Participation of 900
delegates from 64
countries.
• Initiation of the
DAWN™ Youth and
DAWN™ MIND™
international studies.
• 4th International
DAWN™ Summit
in Budapest as a
partnership with
TPE: establishment
of a global effort to
monitor quality of life
and perceptions of
people with diabetes.
• Launch of the final
DAWN™ Youth results
and implementation
of the five action goals
for DAWN™ Youth.
• ’A good life with
diabetes‘ developed as
the first international
evidence-based,
psychological selfhelp positive coping
programme for people
with diabetes.
• Launch of the global
DAWN™ 2 study, the
world’s largest study
of its kind, involving
key stakeholders in
diabetes management
in 18 countries.
• The DAWN™
International Advisory
Board convened.
• Meetings of the multidisciplinary DAWN™
delegations from
each study country to
prepare national action
plans based on the
national study results.
• Establishment of EDID:
European Depression
in Diabetes Research
Consortium.
• 1st DAWN™ Award was
given to Assistance to
Young Diabetes (AYD)
– an education and
support project for
Egyptian children.
• DAWN™ results
published in a large
number of scientific
journals including:
Clinical Diabetes,
Diabetologia, Diabetes
Care and Diabetic
Medicine.
• Development of the
DAWN™ ‘Train the
Trainer’ programme:
The DAWN™
facilitators’ toolkit.
• At the summit, about
45 national best
practices implementing
the DAWN™ Call to
Action were presented;
either as plenum
presentations or
posters.
• Release of the global
type 2 diabetes
guidelines including a
section on psychosocial
issues.
• A unique minority
support programme
in Scotland was
highlighted with the
2nd DAWN™ Award
supporting ethnic
minorities failing to
manage their diabetes.
• More than 600
leading experts from
40 countries shared
visions, successful
projects and state-ofart patient research.
• 3rd DAWN™ Award
was given to the Bharti
Hospital, India for a
project on coping skills
strategies for youth.
• Media Roundtable in
Rome on the DAWN™
Youth findings, with
special focus on family
relations and school
support.
• Publication of the
DAWN™ Youth study
and the call for action
for improving support
for children and young
people with diabetes
and their families, in
Diabetes Voice special
issue and Pediatric
Diabetes supplement.
• Publication of the
DAWN™ MIND™ study
in Diabetes Care.
• National
implementation of
DAWN™ MIND™ Youth
in the Netherlands.
• Release of the toolbox
for national diabetes
programmes with a
dedicated section on
psychosocial issues.
• DAWN™ MIND™
developed into a
practical online tool
to evaluate quality
of life as part of
routine diabetes care.
Launched in Denmark
involving eight diabetes
centres.
CONTENTS  5
MARIA LUÍSA ARAÚJO
Diabetes doesn’t change the important things
Maria has type 2 diabetes
Contents
6 CHAPTER 1: Introduction
43 CHAPTER 8: DAWN™ initiatives around the world
7CHAPTER 2: Rights and responsibilities
of people with diabetes
48CHAPTER 9: DAWN™ tools for
healthcare professionals
50 WHO-5 wellbeing index (DAWN™ Goal 1)
8CHAPTER 3: Understanding the
needs of people with diabetes
51 Problem areas in diabetes questionnaire (PAID) (DAWN™ Goal 1)
52 Room for diabetes in your life (DAWN™ Goal 1)
53 Plans to change your way of life (DAWN™ Goal 1)
10 CHAPTER 4: The DAWN™ programme
11 DAWN™ Study, 2001
54Quality of life for youth – questions about
living with diabetes (DAWN™ Goal 1)
12 DAWN™ Youth study, 2007–09
55 The children’s circle tool (DAWN™ Goal 1)
13 DAWN™ MIND™ study, 2008–09
56 The DAWN™ experiment (DAWN™ Goal 1)
14 CHAPTER 5: DAWN Summits
57Assessment of patient support and team
functioning (DAWN™ Goal 2)
™
58 A good life with diabetes (DAWN™ Goal 3)
17 CHAPTER 6: DAWN™ Call to Action
59 Insulin dialogue toolkit (DAWN™ Goal 4)
18Goal 1: Improving patient-HCP communication
60 DAWN™ MIND™ programme (DAWN™ Goal 5)
20Goal 2: Improving team-based care
61 DAWN™ MIND™ Youth programme (DAWN™ Goal 5)
22Goal 3: Supporting self-management
62 DAWN™ Youth Train the Trainer scheme (DAWN™ Goal 5)
24Goal 4: Overcoming psychosocial barriers to optimal therapy
63 DAWN™ Facilitators’ toolkit (DAWN™ Goal 5)
26Goal 5: Providing psychosocial support
64 CHAPTER 10: The future of DAWN™
29CHAPTER 7: Implementing the DAWN™
strategies globally
66 A 360˚ perspective
67 Quotes from the DAWN™ 2 Advisory Board
30 Strategy 1: Raise awareness and build concerted advocacy
32 Strategy 2: Educate and mobilise people with diabetes
68 REFERENCES
34 Strategy 3: Train healthcare providers and enhance their abilities
36 Strategy 4: Implement practical tools and systems
38 Strategy 5: Promote policy and healthcare system changes
40 Strategy 6: Take part in psychosocial research in diabetes
Wherever they appear in this book, DAWN and MIND signify DAWN™ and MIND™,
which are registered trademarks of Novo Nordisk A/S
6  INTRODUCTION
RIGHTS AND RESPONSIBILITIES OF PEOPLE WITH DIABETES  7
1
2
Introduction
Rights and responsibilities
of people with diabetes
Author: Dr Wim Wientjens, Vice President, International Diabetes Federation (IDF)
Special Ambassador 2010–2012 for the Rights and Responsibilities of People with Diabetes.
Approaching 300 million people in the world today have diabetes1,
but despite the improving quality and availability of treatment,
most of them are still not achieving optimum blood sugar control.
Diabetes is a demanding disease that is largely managed on a dayto-day basis by patients themselves. This generates a lot of stress,
embarrassment and even discrimination, making normal working
lives difficult. Diabetes often leads to depression, with problems
frequently spreading to other family members. In many cultures,
the disease is still seen as so debilitating that people with diabetes
have no hope of leading healthy, productive lives.
From its beginning in 2001, DAWN has developed through four
International Summits and one DAWN Youth Summit especially for
young people with diabetes. It has been guided in that journey by
international diabetes experts, organisations and patient advocates,
who have brought a wealth of experience in the many aspects of
diabetes care.
This book documents the efforts made all over the world under the
DAWN programme in the first ten years of this century, to alleviate
the emotional distress and suffering caused by diabetes. DAWN
is the first initiative to collect large-scale evidence on the impact
of diabetes on daily life, and how distress often limits the ability
of people with diabetes to maintain effective self-management.
Through its widely endorsed goals, strategies and programmes,
and through its partnership with organisations in the diabetes
community, DAWN has facilitated the development of practical ways
to help healthcare professionals (HCPs), families, carers, teachers,
peers and patient organisations to support people with diabetes,
and for those people to gain confidence in their own effective selfmanagement.
Despite the many challenges still faced by people with diabetes,
positive developments in the area of patient-centred diabetes care,
and especially self-management education and support, raise hope
for significant developments in the decade to come.
Now, in 2011, it is time to reflect on the decade that has passed
and the many significant initiatives around the world that help to
bring the DAWN Call to Action into practice.
The global DAWN 2 study will build on the wealth of insights,
psychosocial studies, intervention programmes and awareness
campaigns that have taken place in the wake of DAWN. The new
global DAWN 2 study sets the stage for the next decade, which
will construct a far more detailed picture of how patients can be
supported at the centre of a network of care – both medical and
psychosocial.
Truly effective patient-centred care for diabetes is only possible
through long-standing partnerships between people with diabetes
and their healthcare providers, as well as the involvement of health
policymakers, researchers and industry – all have a role to play.
People with diabetes can contribute a great deal to partnerships
for better care, and contribute to reducing the disease burden on
themselves and society in general. Well organised, effective care and
treatment is the right of all people with diabetes. Equally, people
with diabetes have the right to full and adequate information and
education about diabetes so they can make the best use of it, and
take responsibility for self-management to the best of their ability.
And importantly, people with diabetes should have freedom from
discrimination, stigma, prejudices and reduced opportunities in
society.
The International Charter
That is why the International Diabetes Federation (IDF) has
developed its International Charter of Rights and Responsibilities
for People with Diabetes2. People with diabetes should share the
same human and social rights as people who do not have diabetes.
The Charter is needed, to set a gold standard of principles on their
fundamental rights. It aims:
• to optimise the health and quality of life of people with diabetes
• t o enable the person with diabetes to have as normal a life as
possible
• t o reduce or eliminate barriers preventing the person with diabetes
from realising his/her full potential as a member of society.
In return for these rights …
But together with those rights for people with diabetes come
responsibilities – to keep their healthcare providers fully informed
on their state of health, medication and lifestyle behaviour, to
manage their agreed treatment plan, and to implement and
monitor a healthy lifestyle as part of that self-management. Any
problems in maintaining the treatment should be shared with their
healthcare providers, and that includes psychosocial barriers. And
family, school, work and social colleagues should be told they have
diabetes, so they can be supportive when and if they are needed.
Raising awareness about the rights of people with diabetes is a key
element of IDF’s call for coordinated and concerted international
action to tackle the diabetes epidemic. It is the reason IDF has
supported the key messages of the DAWN initiative since its
inception in 2001. DAWN has contributed so much to a wider
understanding of the difficulties people with diabetes face and
helped inspire initiatives throughout the world towards solving
them. The DAWN 2 initiative provides a unique opportunity, on
an international scale, to highlight again, to all the stakeholders
in diabetes, how far we have come in realising the rights of people
with diabetes to live a normal life, and what we have to do to still
improve further.
Dr Wim Wientjens, Vice President, International Diabetes
Federation (IDF) Special Ambassador 2010–2012 for the Rights and
Responsibilities of People with Diabetes.
8 UNDERSTANDING THE NEEDS OF PEOPLE WITH DIABETES
UNDERSTANDING THE NEEDS OF PEOPLE WITH DIABETES  9
3
Understanding the needs
of people with diabetes
Most day-to-day care for diabetes comes from patients themselves.
This is demanding, as it requires constant attention, every day of the
year. To manage diabetes successfully, people with diabetes depend
on support from many different sources. They depend on access to
proper healthcare and treatment, and also on access to the right kind
of emotional, social and societal support to live full and healthy lives.
Everyone has a role to play in making life better for people with
diabetes. The starting point for change is an understanding of their
needs.
The ‘patient needs’ model, on the next page, is one of several
developed from the DAWN study results and highlights these key
needs. The model illustrates the different types of support from
family, friends, healthcare, work, school and society at large.
Naturally, the needs outlined here vary in importance according
to circumstances and location of the person with diabetes.
Within the model, it is possible to examine the problems and the
resources of support that are presented to a person with diabetes
from each of these layers. Starting with the person with diabetes
at the centre, the model highlights needs in relation to:
Me
Many people with diabetes are anxious about their diabetes getting
worse, about it restricting what they want to do or about their
weight3,4,9,10. These anxieties interfere with self-management4, and
only half of young people can cope emotionally with their diabetes.
They need information and support from many sources to cope as
independent adults.
Family and friends
A stable home life helps diabetes patients of all ages to manage,
but they can still worry excessively about financially dependent
relatives and the future10. Young people often suffer over-protective
or nagging parents4; while others have little support from parents.
Over half of HCPs believe poor adherence to insulin is due to lack
of support from friends and family.
Medical care and treatment
Patients do trust their healthcare team, and need easy access to
well-trained doctors and nurses, specialists and psychologists5.
HCPs should help to allay patients’ fears of insulin, and communicate
effectively with other team members5. Ideally HCPs should be easy
to talk to, give enough time, discuss emotional problems, help
their patients to overcome their fears and involve them in decisionmaking5,6. Many patients feel their medication is too complicated10.
They should also give access to professional psychological support
where needed10.
Work/School
Both employers and schools should offer time out and a place for
treatment, snacks and exercise. Over half of young people with
diabetes miss work or school, or perform less well, and often worry
about finding or keeping employment16. Teachers of young children
with diabetes should be better informed about diabetes and its
emergencies4.
© Novo Nordisk 2011 Patient Needs
Model based on the DAWN study
Living
Over a third of adults with diabetes feel it prevents them from doing
what they want10. Changes to diet and exercise patterns; even basic
self-care for those with diabetes complications need support from
HCPs, dieticians, the community or friends and family. Patients
also benefit greatly from contact with other people with diabetes,
through support groups, online communities or youth camps 4.
Society
People with diabetes need equal opportunities in healthcare,
employment and education; without discrimination, stigma or
embarrassment. The healthcare system should provide accessible
and affordable diabetes care – four out of five HCPs in the DAWN
study called for a higher priority for diabetes in their systems7, and
for better care in the transition from paediatric to adult services4.
Patient Needs Model
Me:
Family and friends:
Being able to cope with my condition, and living a full,
healthy and productive life
Emotional and practical support in all aspects of my condition
Community:
Society:
Medical care and treatment:
Access to quality diagnosis, treatment, care and information
A healthcare system, government and public willing to listen,
and to change, to be supportive of my condition
Work/School:
Obtaining support for, and understanding of, my condition
Living:
Having the same opportunities to enjoy life as everybody else
10  THE DAWN PROGRAMME
THE DAWN PROGRAMME  11
4
The DAWN
Programme
DAWN is about Diabetes Attitudes, Wishes and Needs
Initiated by Novo Nordisk in partnership with the International
Diabetes Federation (IDF) and an international advisory panel of
leading diabetes experts and patient advocates in 2001, the first
DAWN study became the largest study of its kind carried out to
uncover the psychosocial challenges faced by people with diabetes
and the people helping them, and explore new avenues for
improving care.
The study was undertaken in response to the fact that despite
the availability of effective therapies, less than half of people
with diabetes were achieving adequate glycaemic control. It was
realised by the partnering organisations and experts that new
global and national knowledge was needed, taking a 360° view,
to explore the barriers limiting more effective delivery of diabetes
care and ongoing support to those in need. At that time there
were no global studies like this, focusing on the non-medical
attitudinal and psychosocial aspects of diabetes management in
multiple countries.
A multi-stakeholder approach to better diabetes care
The DAWN study set out to identify the barriers and facilitators of
effective self-management and to shed light on the wishes and
needs of people with diabetes and their healthcare providers.
Through the strong endorsement of key organisations and thought
leaders in the field, DAWN grew into a global framework of studies
and collaborative initiatives, translating the insight gained from the
DAWN study into a wide range of actions including publications,
advocacy, new research and sharing of best practices.
Several multinational efforts were undertaken in follow-up to
the DAWN study, including the DAWN Youth study on the needs
of children and young people with diabetes and their families,
DAWN surveys in Asia, and the DAWN MIND initiative, facilitating
monitoring of wellbeing of people with diabetes as part of their
regular diabetes care. Since the original study, the DAWN study
findings have been cited by more than 300 scientific publications
worldwide.
DAWN Study,
2001
The DAWN advocacy programme works in partnership with other
organisations in the diabetes community worldwide to call for
concerted action to promote people-centred diabetes care and
overcome the psychosocial barriers to effective self-management.
It offers understanding that has since been built into national and
international care guidelines, and inspired practical tools and best
practices across the world. Among these are national training
programmes for primary care physicians on the psychological
aspects of care, and quality-of-life questionnaires for people with
diabetes that are now used by many countries in routine health
evaluations.
In 2011, a new era of the DAWN initiative begins with the launch
of the 18-country DAWN 2 study.
The first and largest study of its kind to date, the DAWN study
set out to determine how and why more than half of people with
diabetes do not achieve optimal glycaemic control and a good
quality of life, despite the availability of effective therapy. The study
examined the many factors influencing self-management and quality
of life among people with diabetes, the quality of their relationships
with healthcare professionals (HCPs), the level of collaboration among
HCPs in the care team, and the barriers preventing access to and use
of effective therapy.
The 13-country study was carried out through telephone and face-toface interviews with 5,426 diabetes patients (half type 1, half type 2) and
almost 4,000 healthcare professionals and policymakers. Respondents
were from Australia, Denmark, France, Germany, India, Japan, Norway,
Poland, Spain, Sweden, the Netherlands, the UK and the USA8.
Diabetes-related stress hinders self-management
Most people with diabetes felt that diabetes is demanding and
prevents them from doing what they want; many said they did
not follow all their prescribed treatment. HCPs recognised that
psychosocial issues strongly influence how well patients manage
their diabetes – only 8% of HCPs felt that type 1 patients followed
treatment fully; and 3% for type 2 patients9,10,11.
Diabetes-related emotional distress is common – over 40%
of patients reported poor psychological wellbeing9,11. Doctors
recognised that this distress interfered with effective selfmanagement9,10,11, and more than a third of HCPs did not feel
adequately equipped to address patients’ psychological needs.
Nurses were more likely than doctors to recognise problems and
respond to them11,12.
Better communication is needed
HCPs felt they did not have enough time for talking with their
patients, and often had different views on the problems of
managing diabetes. Almost two thirds of HCPs said they would
like to communicate better with their patients and to increase their
understanding of psychosocial issues and different cultures10,11.
Most patients saw only one or two HCPs about their diabetes, and
less than half believed that their problems were discussed between
care team members, although type 1 patients were twice as likely
to have access to a larger team11,12. HCPs generally recognised
that more effective communication is needed within the diabetes
team10,11.
The possibility of insulin treatment was a worry to more than half
of the type 2 patients; half believed that starting insulin meant
they had failed to manage their diabetes. Only one in five believed
that insulin would help them manage their diabetes better11,13.
Many HCPs were also reluctant to start insulin and a third of them
postponed insulin until ‘absolutely essential’10,11. Some even used
insulin as a threat to encourage diet and exercise11,13.
The DAWN Call to Action
The findings of the study prompted the identification
of five goals that shape the DAWN programme
today. Together, these goals form the DAWN Call
to Action:
• enhance communication between people
with diabetes and healthcare providers
• promote communication and coordination
between healthcare providers
• promote active self-management
• reduce barriers to effective therapy
• enable better psychological care for people
with diabetes.
12  THE DAWN PROGRAMME
THE DAWN PROGRAMME  13
DAWN Youth Study,
2007–09
DAWN Youth is an international framework enabling initiatives
in individual countries to improve psychosocial support for young
people with diabetes. The DAWN Youth initiative was initiated
in partnership with the International Society for Paediatric and
Adolescent Diabetes (ISPAD), IDF and an international DAWN
Youth advisory board composed of patient advocates and experts
in paediatric diabetes. Its key priority areas14 were defined at the
2007 International DAWN Youth Summit15 as support for children
with diabetes in schools; age-appropriate diabetes education and
psychosocial care, and support for parents and families.
The DAWN Youth WebTalk survey, carried out in Brazil, Denmark,
Germany, Italy, Japan, the Netherlands, Spain and the USA explored
the attitudes, wishes and needs of a total of almost 7,000 young
adults with diabetes, parents and carers of children with diabetes,
and HCPs. A separate Fact-Finding survey examined national
strategies supporting young people with diabetes and their families.
Diabetes causes problems at school and at work
About half of the young people surveyed missed work or school
at least once a year because of diabetes, and it affected their
performance, caused embarrassment, discrimination and affected
their friendships16. Many parents or carers had to reduce or give up
work to care for a child with diabetes17, and almost half suffered
financial problems16. About 20% of the young adults surveyed were
not happy with their treatment at school, and together with parents
and almost 90% of HCPs, called for urgent improvement in schools’
understanding of diabetes; especially emergencies17.
Only half of young people with diabetes achieved adequate blood
glucose control16. Depression and anxiety were common, and
almost 20% were referred to psychologists16. Only 20% of the HCPs
routinely used structured psychosocial assessment, although most
would be willing to do so and over 80% felt that healthcare teams
should offer better psychosocial support16,17. One third of young
people with diabetes were not satisfied with resources available
for treating their diabetes16; and over 80% of HCPs called for more
effective transition from paediatric to adult care17.
DAWN MIND Study,
2008–09
Most support for young people with diabetes came from parents
and spouses, followed by siblings and friends, and least from
their schools and the community. Only a third of parents talked to
their HCP16. Two thirds of young adults, parents and carers also
used online discussion groups or camps16, and most HCPs (70%)
supported networking17.
DAWN Youth Call to Action
Based on the study findings from the WebTalk and
the Fact-Finding study, the following action areas
were defined:
• improving support for children with diabetes in
schools
• providing age-appropriate education and
psychosocial diabetes care
• supporting parents and families
• peer support and networking for young people
with diabetes
• addressing obesity and type 2 diabetes in young
people.
DAWN Youth in action
Since the surveys, the results have inspired further research,
initiatives to improve diabetes support in schools18,19,20,21, national
policy reforms and public awareness campaigns20,22,23. Diabetes
camps, particularly in Germany17,24 and the USA 21, have provided
practical knowledge and confidence-building for young people with
diabetes.
DAWN MIND (Monitoring Individual Needs in Diabetes) set out to
implement and evaluate the monitoring of emotional wellbeing in
people with diabetes. It is one of the most significant initiatives to
address the DAWN Call to Action, and gave rise to the DAWN MIND
tool (see page 60).
Regular checks lead to better self-care
A number of formal evaluation methods have already been
developed to assess psychosocial problems, and it is known that
regular assessment promotes better patient care. The DAWN
and DAWN Youth surveys showed that few HCPs were using
structured psychosocial assessment methods, but most would
consider doing so16,25. In order to determine the level of support
that patients need, which changes from time to time, it is
essential that their psychological needs are assessed as a part of
regular care.
The DAWN MIND assessment tool consists of the validated
psychological assessment tools for wellbeing (WHO-5) and
diabetes-related distress (PAID) (see pages 50–51), plus a general
questionnaire. A study to evaluate and test it was conducted with
more than 1,500 patients in Croatia, Denmark, Germany, Ireland,
Israel, the Netherlands, Poland and the UK 26. The results confirmed
that almost a quarter of diabetes patients in all countries suffered
from either depressive symptoms or high diabetes-related distress.
More than three quarters of these emotional problems were newly
identified, and all of those assessed as in need of psychological
care responded positively to discussing their scores. This suggests
that a large proportion of people with diabetes are not receiving
attention to their psychological needs alongside their medical
treatment.
DAWN MIND in action
The DAWN MIND online tool is now ready for implementation
to encourage and accelerate the adoption of psychological
needs assessment into routine care. This action endorses the
recommendation by IDF of annual psychosocial assessment in
its guidelines for care of type 2 diabetes27.
A special DAWN MIND Youth initiative (DM-Y) has also been
developed to extend DAWN MIND to young people with diabetes
and their families. DM-Y includes the questionnaire, a web-based
software program to complete and evaluate it, evidence-based preuse training for HCPs and a manual for HCPs on scoring the results
and communicating effectively with patients25 (see page 61).
The DAWN MIND Study found
• a quarter of the 1,567 people with diabetes in
the study had depressive symptoms or diabetesrelated distress
• more than three quarters had these symptoms
identified for the first time
• less than a third wanted to discuss their mood
• all those identified as in need of psychological
care welcomed discussion.
14 DAWN SuMMITS
NADINE ABRAHAMS
In good company
Nadine has type 1 diabetes
5
DAWN
SuMMITS
– Facilitating global dialogue towards patient-centred care
2002 – Recognising the problem
2006 – Widespread implementation
The First DAWN Summit in 2002 brought together
healthcare professionals, behavioural scientists, patients and
policymakers from many parts of the world to consider the
implications of the DAWN study, and decide how to put its
recommendations into practice. The Summit established
that much improvement was needed in the professional
training and procedures of HCPs, and there was a general
lack of awareness and leadership from health policymakers.
Patient education was inadequate, and the awareness and
understanding of diabetes in the general population was
low. A multi-dimensional approach was therefore needed to
address all these separate issues28.
The Third Summit, held in 2006 with support from
WHO, IDF, EASD, FEND, and the Italian Diabetes Society,
linked with the 2006 Therapeutic Patient Education (TPE)
Congress30,31.
2003 – Calling for action
2008 – Results and commitment
In 2003 the Second Summit attracted diabetes experts and
policymakers from 32 countries, with the involvement of
the IDF and other key organisations. Participants examined
potential ways to use the DAWN study findings to achieve
better care for people with diabetes and studied reports
from programmes already implementing the findings. The
Summit adopted the worldwide DAWN Call to Action with
five specific goals: to tackle inadequate communication
between patients and healthcare professionals, to improve
multidisciplinary care, to support self-management, to
address emotional barriers to effective treatment, and to
help HCPs provide better psychological care in diabetes29.
The Fourth DAWN Summit in 2008, again linked with the
TPE Congress, was able to see the results of the DAWN
MIND and DAWN Youth initiatives. The DAWN MIND study
showed that the psychological needs of diabetes patients are
often neglected and demonstrated the DAWN MIND tool
as an easy way for HCPs to build psychosocial monitoring
into routine care. The DAWN Youth study revealed the
special, largely unmet needs of young people in school
and work, and also of their families. As a result of the
Summit, organisations and delegations made commitments
to monitor and publish information on the progress of
countries worldwide in patient-centred diabetes care32.
It focused on large-scale implementation of the Call to
Action through both practical initiatives and further research;
outlining plans for DAWN Youth. Many examples of diabetes
care in different countries illustrated how innovative tools
and systems were being introduced and were beginning to
improve patient-centred care. But participants agreed that the
majority of diabetes patients still did not receive optimal care.
ZANDILE SIgNORIA MZAYIFANI
Township entrepreneur
Zandile has type 2 diabetes
DAWN CALL TO ACTION 17
6
DAWN CALL
TO ACTION
The findings of the DAWN study prompted the identification of
five goals that form the DAWN Call to Action. The essence of
DAWN, it was developed at the first two DAWN Summits in 2002
and 2003, and has won endorsement from diabetes organisations
worldwide. The DAWN Call to Action defines the key action areas
of DAWN30:
• goal 1: Improving communication between
people with diabetes and healthcare professionals
understanding and addressing psychosocial problems needs
effective communication between doctor and patient. People
with diabetes need to be supported in taking responsibility and
in conveying their medical and social needs. HCPs should develop
their skills in motivating and empowering patients to become
more active partners in the relationship.
• goal 2: Improving team-based care and
communication between healthcare professionals
Effective management of a condition as complex as diabetes
requires input from a wide range of medical professionals
– primary care doctor, diabetes specialist, nurse, dietician,
ophthalmologist, podiatrist, psychologist and sometimes other
specialists. Because it is a long-term, chronic condition, the skills
of many of these HCPs will be needed as part of a coordinated,
multidisciplinary team. Each member should be aware of the
importance of dialogue between them, and be guided by a
strategy to ensure a coherent, integrated approach to optimising
treatment for the individual patient.
• goal 3: Providing individual support for more
active self-management and a healthier lifestyle
The success of the diabetes care team in motivating and supporting
active self-management is central to achieving effective care
and good outcomes. HCPs should take the patient’s individual
circumstances, needs, resources and problems into account when
creating treatment plans, since this is essential if they are to be
followed effectively.
• goal 4: Overcoming psychosocial barriers to
optimal therapy, in both patients and HCPs
HCPs should be aware of the value of ensuring rather than
postponing effective treatment at an early stage of diabetes,
in delaying or preventing the onset of complications. Acting
in partnership, they should make sure that patients have the
information and support needed to make informed decisions
about the reasons for intensifying treatment. This means that
HCPs should keep themselves and patients fully informed about
the diabetes treatment options that would best suit individual
lifestyles and treatment needs.
• goal 5: Enabling HCPs to assess and address patients’
needs for psychological support and treatment
While many people with diabetes cope with it well and live
normal, healthy lives, DAWN studies have shown that many
others suffer emotional stresses and do not benefit from even
basic psychosocial support. The problem is not just one of access
to specialist psychologist support. Instead it is vital that HCPs in
primary care should be more aware of psychosocial problems
and given the information and training to be able to detect them.
In many cases they are then able to provide the level of support
needed to overcome the problem, or otherwise to refer patients
for specialist psychological counselling and support.
18  DAWN CALL TO ACTION
GERALD JOHN GARWOOD
On course for change
Gerald has type 2 diabetes
Goal 1: Improving patient-HCP
communication
Author: Professor Timothy Skinner, Director, University of Tasmania Rural Clinical School, Australia
Healthcare provider-patient relationships are critical
Although the individual with diabetes makes all the important
decisions that affect the daily course of their disease, these decisions
are informed by their consultations with healthcare providers.
Healthcare providers can provide up-to-date, evidence-based
information on what is likely to be the best medication regimen
for the management of diabetes, the effects of different dietary
approaches, how activity affects diabetes control, and how to use
different monitoring tools (blood glucose, urine glucose, blood
pressure) to inform their decisions.
Therefore, constructive relationships between people with
diabetes, their carers and healthcare providers are critical, to
make the most of the healthcare team’s expertise. The person
with diabetes could have to manage relationships with a number
of different healthcare professionals in his medical team. The
nature of these relationships, and how they are perceived by the
individual, is critical to how he makes sense of all the information,
advice and support given.
A paradigm shift
At the time of the DAWN study in 2001, possibly the most
important relevant issue was the debate around empowerment,
and the perceived disempowering nature of interactions with
health professionals. The importance of this issue is possibly best
highlighted by the UK’s National Service Framework for Diabetes
(NSF), published in 20011. This set clear quality requirements for
care, based on the best available evidence of the most effective
treatments and services. It articulated the National Health Service’s
intentions on empowerment of people with diabetes as a core
standard for diabetes care:
“All children, young people and adults with diabetes will receive
a service which encourages partnership in decision-making,
supports them in managing their diabetes and helps them to
adopt and maintain a healthy lifestyle. This will be reflected in
an agreed and shared care plan, in an appropriate format and
language.”
This third core standard comes before the standards relating to
clinical care. Its emphasis on encouraging partnership and shared
decision-making was, and continues to be, a challenge for a
paradigm shift for diabetes care, as policy and evidence pointed
to the need for professionals to move away from their didactic,
authoritarian and acute care model of diabetes care.
The DAWN study was apposite to the debate around empowerment
and the patient-provider relationship. According to the DAWN study,
most patients (88.8%) felt that their relationship with their provider
was good2. However, this was countered by the high number of
providers reporting a need for better understanding of different
cultures and the psychosocial issues their patients were facing. Other
research has shown the importance of effective communication
for optimal treatment outcomes3. The DAWN study revealed major
differences in perspectives on diabetes management between
medical professionals and patients.
Developments since the Call to Action
Since then, studies on the relationships between people with diabetes
and their healthcare team have grown, but have largely moved
towards attempts to change the nature of the interaction between
the provider and person living with diabetes4. The use of patientcentred communication techniques, such as asking patients what they
find hardest about managing their diabetes, and what they view as
successes and involving them in making treatment plans, has been
shown to improve patient-provider understanding5. The patientprovider relationship is also enhanced by offering diabetes education,
to enable the patient to be more informed and develop a more
effective interaction with the HCP; with mutual agreement of goals.
Attempts to change the behaviour of healthcare professionals have
had limited success, but many have also had some negative effects6,
suggesting that healthcare professionals’ behaviour is difficult to
change. However, interventions that have focused on training the
person with diabetes to manage the relationship differently have
been far more productive, with little if any adverse consequences,
and many benefits.
I benefit from the doctor’s knowledge, but I
too have an important role to play, and that
role can only be effective if I know what is
happening. I am the main player in this, so
I have to know what I am doing because it’s
for my own benefit.
Ray, USA, type 2 diabetes
Nearly every intervention in the literature is focused on training
healthcare professionals, largely using trainer-centred approaches,
rather than changing behaviour which is perhaps the more
fundamental issue. More recently, programmes are using behaviour
change methods, and more medical student approaches7. Still, the
literature suggests that most consultations and educational interactions
are not meeting the NSF standard of empowerment8. We continue
to focus on how to change this dynamic, and how to generate a
paradigm shift to empowerment as the norm for diabetes care.
1. Department of Health, England. The National Framework for Diabetes: Standards
2001 London: Department of Health
2. Funnell MM. The Diabetes Attitudes, Wishes, and Needs (DAWN) study. Clinical
Diabetes, 24(4): 154–5, 2006
3. Stewart MA. Effective physician-patient communication and health outcomes: a
review. Can Med Assoc J 152, 1423–33, 1995
4. Anderson RM, Funnell MM. Patient empowerment: reflections on the challenge
of fostering the adoption of a new paradigm. Patient Education and Counseling
57,153–157, 2005
5. Tang T, Funnell MM, Brown MB, Kurlander JE. Self-management support in ’realworld‘ settings: An empowerment-based intervention. Patient Education and
Counseling 79, 2, 178–184, 2010
6. Griffin SJ, Kinmonth A, Veltman MWN, et al. Effect on health related outcomes
of interventions to alter the interaction between patients and practitioners: A
systematic review of trials. Ann Fam Med 2(6), 595–608, 2004
7. L atter S, Sibley A, Skinner TC, Cradock S, Zinken KM, Lussier MT, Richarc C,
Reoberge D. The impact of an intervention for nurse prescribers on consultations to
promote patient medicine-taking in diabetes: a mixed methods study. International
Journal of Nursing Studies 47, 1126–1138, 2010
8. Skinner TC, Barnard K, Cradock S, Parkin T. Patient & professional accuracy of recalled
treatment decisions in outpatient consultations. Diabetic Medicine 24: 557–560, 2007
20  DAWN CALL TO ACTION
KEENAN HENDRICKSE
Working with it
Keenan has type 1 diabetes
Goal 2: improving
team-based care
Author: Dr Linda Siminerio, Executive Director, University of Pittsburgh Diabetes Institute, USA
Why is team-based care important?
Diabetes care through a team approach has been shown to be more
effective than that from a single provider, and efforts to raise the
quality of care by team improvements are more effective on blood
glucose control than any other quality improvement1. But the DAWN
study revealed that primary care physicians noted a lack of routine
multidisciplinary care and a need for more support2. Nurses reported
that they generally provided better education, spent more time with
patients, were better listeners, provided support to family and came
to know patients better than physicians3.
However many nurses reported that their expertise was not valued
and their skills underused. As only a third of diabetes specialist
nurses were managing medication, nurses and physicians in the
DAWN study agreed that nurses should take on a larger role
in diabetes management. Most were willing to embrace more
responsibility, but out of the patients who had better outcomes
when they had access to a nurse, less than half had nurses’ services
available3.
While the DAWN study confirmed that physicians and patients
recognise the importance of team management, including nurses,
dieticians and pharmacists, it is rarely available in primary care4,
where 90% of diabetes care is provided. Only 60% of the patients
with type 2 diabetes had all team members in one location,
and fewer than 50% of patients reported that their healthcare
team members communicated with one another. Patients who
reported better access to healthcare had better diabetes control,
better adherence, and lower stress, regardless of their type of
diabetes. Also, patients who reported a better relationship with
their healthcare professional had better diabetes control, better
adherence, and less diabetes distress. Patients with good support
systems from their community, spouse, or children were also taking
medication more consistently2.
Developments since the Call to Action
At the time of the DAWN study, healthcare providers reported
that their chronic care systems and remuneration were mediocre,
but rated the care systems more highly in countries with socialised
systems (eg the Netherlands and Scandinavia) than in those with
payer systems (eg the USA)5. Since the 2003 Call to Action, countries
with payer systems have been exploring other models. In the USA,
the chronic care model and the patient-centred medical home
have been widely adopted. Both approaches focus on the delivery
of team-based care, self-management and community resources.
Payers and government have been enthusiastic, and in many cases
are reimbursing for these models.
Self-management education is considered a critical component of
diabetes care and many countries are providing training courses
and workshops for diabetes educators. In many places where other
disciplines were not formerly highly valued, today health systems
are seeking opportunities to train and expand the role of nurses and
dieticians in the diabetes team.
Non-communicable diseases (NCDs), including diabetes, have
received increasing international attention since 2003. The United
Nations adopted its Resolution on diabetes in 2006 and the World
Health Organization has organised an NCD Summit in 2011 to
address chronic care. The World Diabetes Foundation and the
International Diabetes Federation are directing funds to translational
research programmes studying healthcare delivery models. National
and international diabetes conference symposia are addressing
models for healthcare delivery and networking forums are discussing
plans for sustainability, government support and widespread
adoption of team-based care.
Team support strategies are also being explored, and
communication, coordination and access between people with
diabetes and healthcare providers are benefiting from internet and
mobile phone technologies.
More challenges prevent fully functioning team support
Team-based care and Diabetes Self-Management Education are
both critical in overcoming the barriers associated with the skills
and complexities of diabetes management. But access, poor
reimbursement, limited HCP training in psychological management,
and limited time with patients are challenges still to be overcome.
When these issues are addressed, patients can be educated and
supported to handle their complex disease successfully.
Healthcare decision-makers and providers need to mobilise efforts
to provide care of sufficient quality to meet the complex needs
of people living with chronic diseases. Partnering with primary
care physicians to provide patient education, patient incentives,
reimbursement models for team members, and technological
approaches for the creation of virtual teams are all avenues that
should be explored.
You need to know your doctor, because those
that don’t know you, don’t know my fears.
They have loads of flashy theories but you
can’t use everything on everyone. We are all
different. It’s vital your doctor knows you and
that you don’t see a new doctor at every visit.
Marianne, Denmark, type 1 diabetes
1. Shojania KG, et al. Effects of quality improvement strategies for type 2 diabetes on
glycemic control – A meta-regression analysis. JAMA 296:427–440, 2006
2. Skovlund SE, Peyrot M, on behalf of the DAWN International Advisory Panel.
The Diabetes Attitudes,Wishes, and Needs (DAWN) program: a new approach to
improving outcomes of diabetes care. Diabetes Spectrum 18:136–142, 2005
3. Siminerio LM, Funnell LM, Peyrot M, Rubin RR. US nurses’ perceptions of their role
in diabetes care. Results of the cross-national Diabetes Attitudes, Wishes and Needs
(DAWN) study. Diabetes Educator 33, 1, 2007
4. Bodenheimer T, Chen E, Bennett HD. Confronting the growing burden of chronic
disease: Can the US health care workforce do the job? Health Affairs 28,1, 64–74, 2009
5. Peyrot M, Rubin RR, Lauritzen T, Skovlund SE, Snoek FJ, Matthews DR, Landgraf R,
International DAWN Advisory Panel. Patient and provider perceptions of care for
diabetes: results of the cross-national DAWN study. Diabetologia 49:279–288, 2006
22  DAWN CALL TO ACTION
DAWN CALL TO ACTION  23
GOAL 3: SUPPORTING
SELF-MANAGEMENT
Author: Martha M. Funnell, MS, RN, CDE, Research Investigator,
Department of Medical Education, Michigan Diabetes Research and Training Center
Managing diabetes is not easy
Active self-management through continuing support
Diabetes is a multi-faceted, complex and demanding chronic disease.
It is also largely self-managed, with about 99% of the care provided
by the patient. As a result, understanding and improving selfmanagement is essential for improving diabetes outcomes. Because
of the serious nature and complexity of treating diabetes and the
multiple self-care decisions required of patients, self-management
has also traditionally been one of the most difficult aspects of
diabetes care for both patients and healthcare professionals.
DAWN reinforced the importance of ongoing Diabetes Self
Management Support (DSMS), which is now part of national and
international standards for diabetes education3,4. The purpose
of DSMS is to provide the psychosocial and behavioural support
needed to enhance and sustain active self-management throughout
a lifetime of diabetes5. Effective DSMS reflects the dynamic and
evolving conditions of both the treatment of diabetes and the
patient’s life circumstances, priorities and goals.
The DAWN study confirmed what many healthcare professionals
already suspected: less than 20% of the patients (type 1=19.4%;
type 2=16.2%) reported that they completely followed all aspects
of their treatment plans1. DAWN also provided insights about what
could be done to promote and facilitate self-management. Many
clinical and research efforts directed towards improving selfmanagement since then have incorporated these findings.
A variety of DSMS approaches have been recommended5,6. Clearly all
members of the healthcare team have the opportunity to promote
self-management at each patient encounter. Development and
implementation of peer DSMS programmes have also gained a great
deal of interest since DAWN. Effective peer-led self-management
support programmes have been developed and disseminated, and other
models, including the use of technology are currently being tested6.
Active self-management through diabetes education
Patient education has long been considered the cornerstone of
self-management, and is effective for improving metabolic and
psychosocial outcomes and reducing costs2. Initially, Diabetes
Self-Management Education (DSME) was primarily lecture-based
and disease-focused. Patients were expected to adjust their lives to
comply with treatment recommendations. As DSME evolved over
the years, behaviour change received greater emphasis. However,
because the focus was on motivating patients to be adherent, these
efforts were successful in the short term but largely unsuccessful for
sustained behaviour change1.
Continuing evolution of DSME has been greatly influenced
by DAWN. One key lesson learned is that problems with
self-management are due largely to psychosocial issues1.
Addressing diabetes-related distress is now recognised as a
necessary component of DSME in order to promote active selfmanagement 3,4. More and more educational materials and
programmes integrate clinical, behavioural and psychosocial
aspects throughout the diabetes education process.
One of the most difficult things about diabetes
is that you constantly feel guilty – are you
doing well enough? Do you take your levels
often enough? Do you eat properly? Exercise?
Marianne, Denmark, type 1 diabetes
Active self-management through patient-centered collaboration
Self-management has often been described as the most frustrating
aspect of diabetes care. The health professional participants in
DAWN indicated they believed that less than 8% of type 1 and 3%
of type 2 patients followed all of their treatment recommendations1.
It is difficult for healthcare professionals when they feel helpless
to influence their patient’s self-management decisions, and are
concerned about the long-term consequences of those choices. It is
equally frustrating for people with diabetes when they feel that their
needs, goals and priorities are not considered and valued, or when
their self-management efforts are not recognised or do not result in
hoped-for improvements.
The basis for promoting and sustaining active self-management
is a collaborative partnership between patients and healthcare
professionals. An empowerment-based, patient-centred
communication strategy that can be used to create this type of
partnership is the ALE (Ask, Listen, Empathise and Encourage)
method7 as demonstrated in the DAWN experiment (see page 56).
Self-directed behavioural goal-setting is an additional strategy for
promoting active self-management. Starting an encounter by asking
the patient what is hardest in terms of self-management, listening
to the patient’s concerns, encouraging through additional questions
or reflections and then closing the loop at the end of the visit by
setting a goal, is an effective approach for promoting active selfmanagement7.
I was always afraid of doing something wrong,
that I would have to go into hospital because
I wasn’t doing something right, and that I
would eat something I wasn’t allowed to and
it would affect me; that’s my biggest fear.
Matthew, UK, type 1 diabetes
Active self-management is the result of a partnership between
patients and their healthcare team. The expertise of the patient
about himself, and the diabetes management expertise of
health professionals are of equal importance. In this relationship,
collaboration results in an effective and sustainable selfmanagement plan. The result is decreased frustration for both
patients and healthcare professionals, and more importantly:
improved outcomes for people with diabetes.
1. Skovlund SE, Peyrot M, on behalf of the DAWN International Advisory Panel. The
Diabetes Attitudes Wishes and Needs (DAWN) programme: a new approach to
improving outcomes of diabetes care. Diabetes Spectrum 18:136–142, 2005
2. Duncan I, Birkmeyer C, Coughlin S, Qijuan (E)L, Sherr D, Boren S. Assessing the
value of diabetes education. The Diabetes Educator 35:752–760, 2009
3. Funnell MM, Brown TL, Childs BP, Haas LB, Hosey GM, Jensen B, Maryniuk M, Peyrot
M, Piette JD, Reader D, Siminerio LM, Weinger K, Weiss MA. National Standards for
Diabetes Self-Management Education. Diabetes Care 30:1630–1637, 2007
4. IDF Standards for Diabetes Self-Management Education (3rd Edition). International
Diabetes Federation, Brussels, Belgium, 2010
5. Funnell MM, Tang TS, Anderson RM. From DSME to DSMS: Developing
empowerment-based diabetes self-management support. Diabetes Spectrum
20:221–226, 2007
6. Heisler M. Different models to mobilise peer support to improve diabetes selfmanagement and clinical outcomes: evidence, logistics, evaluation considerations
and needs for future research. Journal of Family Practice 27(Suppl 1):i23, 2010
7. Funnell MM, Anderson RM. Empowerment and self-management education. Clinical
Diabetes 22:123–127, 2004
24  DAWN CALL TO ACTION
LIAM CARSTENS
Seriously active
Liam has type 1 diabetes
Goal 4: Overcoming psychosocial
barriers to optimal therapy
Author: Dr. Hitoshi Ishii, Tenri Yorozu Soudanjyo Hospital, Japan
Anxieties and resistence contribute to poor control
It is now recognised that good clinical outcomes in diabetes are
challenged by a range of psychosocial barriers, on the part of both the
patient and the healthcare professional. Patients are anxious about their
current and long-term health, treatment procedures, complications
like hypoglycaemia, and general difficulties of coping with everyday
life. The healthcare professional is often more concerned with clinical
measurements and treatments than with ensuring that he understands
the factors hindering the patient’s adherence to his recommendations.
Two-way communication with patients is not always effective, and
doctors’ reluctance to make timely use of insulin and other modern
therapies in primary care is well known.
The DAWN study in 2001 was the first international study to show
the effect of these barriers on clinical practice1. More than half of
patients with diabetes on other, less effective therapies were reluctant
to begin insulin therapy. DAWN also shed light on the psychological
resistance to insulin therapy among doctors. Almost half reported
delaying insulin until it was ‘absolutely necessary‘2, and many
providers, especially those in the USA, used an insulin regimen as a
threat to encourage improved diet and exercise. As a consequence,
many people with type 2 diabetes remained in poor control, when
insulin could help them manage their diabetes more effectively.
There needs to be a strategy where if a doctor
sees that, he would take time to sit down
with me and counsel me; give me a way to
understand that moving from oral to insulin
is not the end. Had it been done the very first
day, I wouldn’t have had six months of heavy
burden.
Ray, USA, type 2 diabetes
Developments since the Call to Action
Since then, continued research has confirmed that key barriers
persist2,3, but numerous research initiatives in many countries have
been conducted to understand the barriers further. One key study
looking specifically at attitudes to the use of insulin for type 2
diabetes was conducted in Japan4. Doctors resisted use of insulin
because they were inexperienced in initiation/unable to support or
guide patients/anxious about the burden to the patient/concerned
about use in the elderly/anxious about the risk of hypoglycaemia.
A higher level of responses about lack of experience and resources,
and worries about the difficulty of insulin initiation, was closely
correlated with lower use of insulin therapy. Although more than
half of these patients responded that insulin would give better blood
glucose control, most had negative views: fear of injection or pain/
fear of the reactions of other people/belief that the diabetes was
getting worse/fear of hypoglycaemia. There is clearly a long way to
go if these attitudes are to be overcome.
Between 2008 and 2010, the DAWN initiative has focused on
evaluating and validating approaches to enable psychosocial
monitoring in regular diabetes care, and cost-effective resources
to help patients cope with their individual psychosocial issues.
These include the DAWN MIND toolkit and the insulin dialogue
toolkit developed in Japan. To overcome barriers to effective
therapy, the DAWN advisory board in Japan developed a
tool to promote communication, using a simplified version
of the Insulin Treatment Appraisal Scale (ITAS) to understand
patients’ anxieties. The tool enables not only physicians but
also other HCPs to communicate more effectively with patients
and providing the information that help them implement new
routines (see more on pages 60–61).
A small number of countries, including Germany and the UK, have
adopted patient-centred, evidence-based guidelines, and the IDF
has addressed the need for measures to overcome psychosocial
barriers in its guidelines for type 2 diabetes5. In the USA, DAWN
studies have contributed to the position statements from the
American Association of Diabetes Educators, on psychological issues
of diabetes management, the chronic care model6,7; and the role of
pharmacists in type 2 diabetes management8; and also to annual
national standards for Diabetes Self-Management Education9.
Putting the ideas into practice
But even where these guidelines exist, clinical practice lags far behind
in taking up the principles of psychosocial support. Much more of the
work of DAWN is needed, in encouraging healthcare professionals to
be open to the concept of partnership with the patient and shared
decision-making. One simple example would be to explain at diagnosis
that diabetes is progressive, and introduce the idea of insulinisation
from the start – avoiding patients interpreting the change as their
own failed self-management. More action is also needed in adopting
regular psychological monitoring, taking psychometric tools into
routine practice, training healthcare professionals to address the
anxieties around insulin initiation, and improving patient education
and information to empower them to meet the challenge. Patients will
become more active partners in treatment decisions, and healthcare
professionals will have the tools, communication skills and education
to provide the best emotional and medical support, rather than a lessthan-optimal, medical-focused approximation.
1. Alberti G. The Diabetes Attitudes, Wishes, and Needs (DAWN) study. Practical Diabetes
International, 19(1): 22–24a, 2002
2. Peyrot M, Rubin RR, Lauritzen T, Skovlund SE, Snoek FJ, Matthews DR, Landgraf R, and
Kleinebreil L on behalf of the International DAWN Advisory Panel. Resistance to insulin
therapy among patients and providers: Results of the cross-national Diabetes Attitudes,
Wishes, and Needs (DAWN) study. Diabetes Care, 28(11): 2673–9, 2005
3. Hunt LM, Valenzuela MA, Pugh JA. NIDDM patients’ fears and hopes about insulin
therapy: the basis of patient reluctance. Diabetes Care 20:292–298, 1997
4. Iwamoto Y, Ishii H, Oikawa S. et al: Japanese physicians’ attitudes towards insulin
therapy may influence prescribing behavior. Diabetologia 49, Suppl 1, 525, 2006
5. International Diabetes Federation. Global guideline for type 2 diabetes, 2005.
www.idf.org/guidelines/type-2-diabetes
6. Funnell MM, Anderson RM, Austin A, Gillespie SJ. AADE position statement:
Individualization of Diabetes Self-Management Education. Diabetes Educator, 33(1):
45–9, 2007
7. Siminerio LM, Drab SR, Gabbay RA, Gold K, McLaughlin S, Piatt GA, et al. Diabetes
educators: Implementing the chronic care model. Diabetes Educator, 34(3): 451–6, 2008
8. Drab S. Translating clinical guidelines into clinical practice: Role of the pharmacist in
type 2 diabetes management. Journal of the American Pharmacists Association, 49(6):
E152–62, 2009
9. Funnell MM, Brown TL, Childs BP, Haas LB, Hosey GM, Jensen B, et al. National
standards for Diabetes Self-Management Education. Diabetes Care, 34: S89–96, 2011
26  DAWN CALL TO ACTION
CYNTHIA LINDELWA RILITIYANA
A step in the right direction
Cynthia has type 2 diabetes
Goal 5: Providing
psychosocial support
Author: Frank Snoek, Professor of Medical Psychology, VU University Medical Centre, The Netherlands
Balancing diabetes with daily life
Living with diabetes – like any chronic disease – can be emotionally
demanding, and at times overwhelming. Some patients report
they have a hard time ‘staying sane’ when experiencing the daily
consequences of fluctuating blood glucose levels, despite their best
efforts to stay in control of the diabetes. Patients with diabetes
and their families may feel burned out at times by the demands of
having to self-manage while coping at the same time with the daily
stresses of everyday life. Diabetes is very definitely a balancing act.
Fortunately, although a cure for diabetes still appears to be a
long way ahead, medical care for diabetes patients has improved
significantly in the past decades. Better, safer medications and
more convenient medical technologies are available to the patient.
Still, as shown by the DAWN study, both medical and psychosocial
outcomes of diabetes care are suboptimal in a substantial minority
of people living with diabetes. These findings call attention to the
need of providing adequate psychosocial support to patients as
integral part of ongoing diabetes care.
Importantly, the DAWN study revealed that the vast majority of
healthcare professionals acknowledged the importance of offering
psychosocial care to their patients, but felt they lacked the necessary
skills and resources. In response to these findings DAWN has taken
several initiatives to help improve the quality of psychosocial care for
people with diabetes. Among these are actions to raise awareness
of the issue among stakeholders, promoting international guidelines
and disseminating tools and training programmes. The international
DAWN programme has in the past ten years provided an important,
action-oriented platform to promote recognition of the psychosocial
needs of people with diabetes and stimulated research in the field.
DAWN has not only helped to set the agenda, but also to take
action.
Developments since the Call to Action
Inspired by DAWN, several studies have been conducted confirming
the high prevalence of coping problems and affective disorders in
both type 1 and type 2 diabetes patients, underscoring the need to
improve detection rates and mental health services. International
guidelines have been developed advocating a multidisciplinary,
holistic approach to diabetes, addressing both the medical and the
psychological needs of patients. It is recommended that mental
health experts are part of the diabetes team, to offer support to
patients with psychological co-morbidities, and to assist diabetes
professionals in their efforts to help patients make important
behaviour changes that can significantly reduce health risks.
But do these guidelines actually work in practice? Doctors are faced
with increasing numbers of patients and have only a few minutes to
spend with their patients. Is DAWN a reality or a dream?
I didn’t tell anyone. I went to school and told
my teachers, but I asked them to keep it a
secret. Sitting there in class I would worry
constantly while my friends were goofing off.
programmes, e-learning modules and web-based psychological
support. New times are ahead of us, presenting new challenges,
raising new questions, prompting us to search for new answers.
This is exactly what DAWN 2 is about. Hopefully the findings will
inspire patients, professionals and policymakers to set the stage for
the coming years, securing psychosocial support for all people with
diabetes. To quote the World Health Organization: “Mental health is
an integral part of health; indeed, there is no health without mental
health.”
Nobody else I knew had diabetes. I walked
about almost in a coma. To me it felt like I’d
been kicked out of normal society. It came
as a shock to be kicked out of society.
Kyoko, Japan, type 1 diabetes
Dana, USA, type 2 diabetes
To demonstrate the validity of DAWN and inspire dissemination of
best practices, the multinational DAWN MIND study – Monitoring
of Individual Needs in Diabetes – was initiated. I am proud to have
coordinated MIND; building on our previous work and showing that
monitoring and discussing wellbeing as part of the diabetes annual
review significantly improves the recognition of emotional distress
by diabetes professionals, and effectively helps to address the unmet
needs of many patients.
A new approach that really works
The outcomes are clear: putting the IDF guidelines on psychological
care into practice is feasible and actually works. Simply listening and
acknowledging the emotional needs of patients is helpful for many;
while others need professional counselling or medication. In many
countries such professional psychological and psychiatric services
are scarce, underscoring the need to seek innovative ways to
expand their reach at low cost; for example by offering peer support
Peyrot M, Rubin RR, Lauritzen T, Snoek FJ, Matthews DR, Skovlund SE. Psychosocial
problems and barriers to improved diabetes management: results of the Cross-National
Diabetes Attitudes, Wishes and Needs (DAWN) Study. Diabet Med Oct;22(10):1379–
85, 2005.
Snoek FJ, Kersch NY, Eldrup E, Harman-Boehm I, Hermanns N, Kokoszka A, Matthews
DR, McGuire BE, Pibernik-Okanovic M, Singer J, de Wit M, Skovlund SE. Monitoring of
Individual Needs in Diabetes (MIND): baseline data from the Cross-National Diabetes
Attitudes, Wishes, and Needs (DAWN) MIND study. Diabetes Care 34(3):601–3, 2011.
Epub 25 January 2011.
van Bastelaar KM, Pouwer F, Cuijpers P, Riper H, Snoek FJ. Web-based depression
treatment for type 1 and type 2 diabetic patients: a randomized, controlled trial.
Diabetes Care 34(2):320–5, 2011. Epub 7 January 2011.
de Wit M, Snoek FJ. The DAWN MIND Youth program. Pediatr Diabetes 10 Suppl
13:46–9, 2009. Review. No abstract available.
Prince M, Patel V, Saxena S, Maj M, Maselko J, Phillips MR, Rahman A. No health
without mental health. Lancet,370(9590):859–77, 2007. Review.
IMPLEMENTINg THE DAWN STRATEgIES gLOBALLY 29
ROgÉRIO SILVA
Learn to live in harmony with your diabetes
Rogério has type 2 diabetes
7
IMPLEMENTINg THE DAWN
STRATEgIES gLOBALLY
Six strategies were recommended by the DAWN International
Advisory Board30, to achieve the DAWN goals for improving
psychosocial care in diabetes:
Strategy 1: Raise awareness and
build concerted advocacy and action
It is vital that the importance of the emotional
aspects of diabetes becomes better known, both
in the medical profession and the general public.
Individuals and organisations who are knowledgeable about the
need for, and benefits of providing psychosocial support for people
with diabetes should actively work to spread that awareness with
colleagues and the general public. This principle has been put
into action by DAWN Youth’s Young Voices – young people with
diabetes using their own experience to raise awareness.
Strategy 2: Educate and
mobilise people with diabetes
Diabetes patients and people at risk of diabetes need
a wide range of information to help them make
informed decisions about their health, treatment
and quality of life. Information can empower and motivate them
to take effective control of the condition, so they need all available
information about new approaches, tools, and guidelines to support
patient-centred care. As the major task of care falls to patients
themselves, the patients need to be (and are) the experts, making
use of printed, television and internet sources.
Strategy 3: Train healthcare
providers and enhance their abilities
Diabetes treatment often meets psychosocial
problems which hamper patients’ attempts at selfmanagement. It is important to find better ways to
identify these problems at an early stage, and to address them in
the primary care setting. Healthcare professionals providing diabetes
care should be offered training in communication, motivation and
identification of psychological problems. The attitudes of HCPs
towards patient-centred care are crucial to its success33.
Strategy 4: Implement
practical tools and systems
Identifying the psychosocial and educational needs
of people with diabetes calls for effective listening
and communication skills in healthcare professionals.
Simple, non-intrusive tools are invaluable to help them to build
psychological monitoring into routine practice34. These are best used
as an integral part of comprehensive diabetes care, in the hands of
competent healthcare professionals.
Strategy 5: Promote policy
and healthcare system changes
The psychosocial wellbeing of people with diabetes
should be granted the same priority as their medical
needs, within diabetes management guidelines,
reimbursement systems, and healthcare quality systems. Adoption of
the chronic care model supported by the World Health Organization35
should be advocated with governments and healthcare policymakers.
A number of countries have adopted psychosocial chapters into diabetes
care guidelines, as well as the IDF global guideline for type 2 diabetes27.
The challenge remains to build those guidelines into clinical routine.
Strategy 6: Take part in
psychosocial research in diabetes
Further collaborative clinical research on psychosocial
aspects of diabetes is needed to demonstrate the
benefits to society of patient-centred diabetes
care. In order to achieve the DAWN objectives, research now
needs to focus on more practical behavioural and diabetes trials,
determination of the public health impact, wide use of psychometric
measures, with benchmarking, and more effective external
reporting36.
30 IMPLEMENTINg THE DAWN STRATEgIES gLOBALLY
PATRICIA guIMARÃES
getting the right information is critical
Patrìcia has type 1 diabetes
STRATEgY 1: RAISE AWARENESS
AND BuILD CONCERTED ADVOCACY
Best practice: Poland – Awareness of healthcare professionals
DAWN Strategy 1 calls for the use of advocacy to raise awareness
of the need for psychosocial support in diabetes and its benefits.
The DAWN Study results for Poland showed a particularly striking
need for psychosocial support. Almost three-quarters of patients
consulted were concerned that their diabetes would get worse, but
at the same time were worried about the prospect of starting insulin
therapy. 86% said that insulin therapy was used as a threat to make
them comply with other treatment. There was clearly an urgent
need to improve the understanding of healthcare professionals as
well as patients’ needs.
In 2003 the multi-initiative National Programme to support
People with Diabetes was established by the Polish Diabetes
Association, the National Consultant on Diabetology, the Polish
Diabetics' Association and sponsored by Novo Nordisk. One
aspect focused on overcoming the psychosocial barriers in doctorpatient communication. To do this it was first necessary to give
healthcare professionals a greater understanding of how to identify
psychological distress and offer support. It would provide simple
tools for assessment, and show how to adapt treatment and offer
education to suit the individual patient.
Training – and much more
The programme provided training for healthcare professionals in
the use of a published method of evaluating how patients
are coping with diabetes, and a practical schema for using
psychotherapeutic management within regular medical visits.
Workshops for more than 30 clinical psychologists and a similar
number of diabetes specialists were run for 540 HCPs on the
principle of training the trainer, so that these participants would
be able to train general practitioners. The special workshops they
provided trained more than 3,500 gPs and 80 nurses.
But the training sessions were only part of the activities to raise
awareness in healthcare professionals. Formal publications about
the methods in medical journals provided the full background
and details, while brochures for doctors were published about
the psychological aspects of diabetes, depression in diabetes and
its evaluation, techniques for handling stress in diabetes, and
the value of physical exercise. A series of lectures on the positive
effect of exercise on anxiety, depression and mood in people with
diabetes was held in 13 locations throughout Poland; and practical
workshops for 800 healthcare professionals on using relaxation
techniques to help diabetes patients to handle stress.
A preliminary survey among physicians who received training
showed that almost 70% were using the method of evaluating
coping and the practical schema, and most found them very
valuable or moderately so. Well over 90% were interested in further
training or consultation with experts.
ADVOCACY AND
RAISINg AWARENESS
• Raising awareness of the emotional aspects of
living with diabetes is essential – in the general
public and among healthcare professionals.
• Healthcare policymakers and government
administrators also need to understand the
beneficial impact of psychosocial care in
improving self-management and reducing
care needs.
32  IMPLEMENTING THE DAWN STRATEGIES GLOBALLY
Camp D
Germany
Strategy 2: Educate and
mobilise people with diabetes
Best practice: Camp D, Germany
DAWN Strategy 2 is to provide information and education to people
with diabetes and those at risk of developing it.
Camp D – the DAWN Youth Camp in Germany – is one of the most
effective examples of informing and motivating people with diabetes.
Children with diabetes are generally well managed in experienced
paediatric teams and are able to enjoy special activities. But many
patients become ’lost in real life‘ in the time between paediatric and
adult care, when personality development, job and partners gain
priority over diabetes. There were previously no existing activities
especially intended for young people with diabetes in that age group,
so the idea of a four-day tent camp was developed as an environment
where adolescents and young adults could focus on diabetes again.
Camp D – ‘Live your life’ was first run in 2006 in Bad Segeberg,
Germany, with 650 participants. In 2008 the second – ‘My Camp
D’ attracted nearly 700 young people with diabetes aged between
16 and 25, from Austria, Switzerland and Germany. The 2011
Camp D will have more participants than any have previously, and
is jointly organised by Novo Nordisk with Bayer HealthCare, and
co-sponsored by Medtronic and the German umbrella organisation
diabetesDE, with the theme: ’Changing diabetes together’.
Fun and learning
As well as sports and games, the camp gives plenty of opportunity
for workshops and discussions on aspects of living with diabetes
as a young person – coping with the practicalities of testing and
injecting at school, college or work, and matching insulin to food
intake and sport: also social and emotional issues like dealing
with stigma or criticism, and sex. The key throughout is building
friendships and confidence to deal with diabetes – talking with
others who share the same difficulties and feelings is an invaluable
source of comfort and support.
At the camps, participants are supported by up to 200 experienced
staff including 35 diabetologists and psychologists to resolve
any problems, and a number of trained diabetes educators.
All healthcare professionals wear red shirts with a slogan
informally encouraging camp participants to chat – breaking the
communication barrier often felt between patient and doctor.
Boosting confidence
Participants are invited at each camp to take part in a DAWN Youth
survey about their metabolic control and psychological wellbeing,
and these have found increased motivation and self-confidence in
managing diabetes. Camp D has generated much interest from the
press and politicians, and has raised public awareness, in central
Europe in particular, for the challenges facing young people with
diabetes. Similar diabetes camps are organised in the USA.
Educating and
motivating people
with diabetes
• At Camp D, everyone has diabetes,
so everyone has the same issues and
can offer peer support (as well as fun).
• Workshops and discussions explore practical
diabetes knowledge and life issues.
• Professional support staff are available to advise.
• Participants report marked increase in
motivation and confidence.
34 IMPLEMENTINg THE DAWN STRATEgIES gLOBALLY
ADRI VAN DER WIELEN
Occupational Health Nurse
Netcare Pretoria East Hospital
STRATEgY 3: TRAIN HEALTHCARE
PROVIDERS AND ENHANCE THEIR ABILITIES
Best practice: Denmark – Training the trainer
DAWN Strategy 3 calls for healthcare professionals to receive training
in the psychosocial aspects of diabetes in order to enhance their skills.
As a result of the DAWN Study, a concerted programme to provide
training for healthcare professionals in psychosocial support and
improving communication has been running in Denmark. Active
partnership between Novo Nordisk, the Danish DAWN Steering
Committee which has members from hospitals, and the Danish
Diabetes Association has led to systematic use of this method in
training staff in Danish diabetes departments, in cooperation with
Danish communication and psychosocial experts.
Courses have been held throughout hospitals in Denmark to
educate healthcare providers, who are then able to convey their
new understanding to others – the DAWN courses are training the
trainer and the HCP. The aim is to generate and cascade awareness
of the importance of effective communication between healthcare
professional and the patient, in order to take full account of the
problems and worries that may be preventing them from managing
their diabetes effectively and have quality in their lives from day to
day. Healthcare professionals from both primary and secondary care
have been able to benefit from these courses.
Spreading the word
The teaching courses have been backed by further meetings and
seminars with healthcare professionals, in order to extend the
findings from DAWN and DAWN Youth. The results of the teaching
programme have been published to spread the word even further,
and to inspire clinical practice in diabetes departments throughout the
country. It is anticipated that together these approaches will enable
widespread implementation of psychosocial screening tools such as
DAWN MIND online, including use of PAID, WHO-5 and the children’s
circle tool (see pages 50, 51 and 55). They should also develop skills
and encourage allocation of resources to ensure improved treatment
for psychosocial needs. Denmark is also the first country to implement
the online version of DAWN MIND, which includes HCP training.
The Danish training programme has been particularly successful for
several reasons. First, it did not attempt to educate all healthcare
professionals, but instead opted for training the first tier who could then
train further groups, and so on. Novo Nordisk Denmark has been very
committed to this project and that the method (Calgary Cambridge37)
is an important part of Novo Care Education in primary and secondary
care. Involving commitment from all the different organisations with an
interest in diabetes, including medical practitioners, strengthened the
programme’s credibility and potential for success; and gave access to a
broad range of interested parties. Information campaigns were held in all
the regions of Denmark, with face-to-face meetings with policymakers
and written information that led to solid implementation of changes.
The programme has, with support from the Danish Diabetes Association,
raised awareness among HCPs and the general public of the importance
of feelings and emotions in effective diabetes management.
TRAININg FOR
HEALTHCARE
PROFESSIONALS
• Training was provided to HCPs to build skills in
communicating effectively to accommodate the
needs of both patient and HCP, resulting in an
agreement.
• The HCPs were encouraged to pass on
to colleagues their new understanding of
communicating psychosocial aspects of diabetes.
• The programme was based on enlisting
commitment from the DAWN Steering Committee.
36 IMPLEMENTINg THE DAWN STRATEgIES gLOBALLY
AMARA DE ABREu
Looking forward to a healthy future
Amara has type 1 diabetes
STRATEgY 4: IMPLEMENT
PRACTICAL TOOLS AND SYSTEMS
Best practice: Taiwan – Insulin dialogue toolkit
DAWN Strategy 4 calls for the development and application of
practical, patient-centred tools and systems
In an initiative to identify the aspects of diabetes care in Taiwan
where improvement was most needed, three diabetes associations
worked together to conduct a national survey of patients,
healthcare professionals and policymakers. The survey showed that
psychosocial aspects were the least well provided for for people
with diabetes in Taiwan.
The associations behind the survey were the Chinese Taiwanese
Diabetes Association (CTDA), the Taiwanese Association of Diabetes
Educators (TADE) and the Formosan Diabetes Care Foundation
(FDCF). Together with an educational foundation (Kung Tai), which
supports young people with diabetes, the three associations had
developed the 2007 Taiwan Declaration on Diabetes and its action
plan38, with a broad range of programmes to improve diabetes care.
Spreading the word
The experience of the insulin toolkit in use was shared with other
healthcare professionals, diabetes educators, health authorities
and policymakers in lectures and discussions. This enabled the
wider audience to learn about the emotional barriers that can
hinder effective treatment, and to consider trying out psychosocial
assessment methods such as the insulin dialogue toolkit, and using
them in their own work.
In 2010, in response to many requests from users of the toolkit,
the DAWN diabetes dialogue website (www.dawnstudy.tw) was
developed to communicate the toolkit online. The importance of
insulin use in effective blood glucose management has been also
promoted through a public awareness campaign called ‘Are you 7?’
areyou7.tw.
Finding out the root of fears
One of the most ambitious of these programmes was the START
programme (Start insulin). It set out to understand and address
the emotional and social needs of patients, with the support of
healthcare professionals and diabetes educators. In 2009 START
introduced the DAWN insulin dialogue toolkit (see page 59) to
evaluate patient perceptions and attitudes towards starting insulin
therapy, and the fears that hold them back from insulin treatment.
The understanding gained would enable healthcare professionals
to allay these fears, in order to contribute to reducing the blood
glucose level from the average HbA1c of 8.9% recorded by TADE
in 200639.
Following the training of 300 diabetes educators from TADE in three
workshops island-wide, the toolkit was used with hospital patients.
Their responses were able to help the doctors to evaluate their
concerns and attitudes towards treatment, such as fear of needles
or fear that they had failed in their diabetes management so far.
PROVIDINg TOOLS
TO SuPPORT
PSYCHOSOCIAL NEEDS
• Simple tools can be used to build
psychological monitoring into routine
examinations.
• As well as providing evidence for the HCP, the
tools can provide a framework for enhanced
communication between physician and patient.
38  IMPLEMENTING THE DAWN STRATEGIES GLOBALLY
Mr Franco Frattini
Minister for Foreign Affairs in Italy and
former Vice President of The European Commission
Strategy 5: Promote policy and
healthcare system changes
Best practice: Italy – a historic agreement with the Ministry
of Health
To ensure improved psychosocial care for people with diabetes,
DAWN Strategy 5 sets out to drive change in healthcare policy and
systems, through diabetes management guidelines, reimbursement
mechanisms, and healthcare quality control.
An agreement with the Italian Ministry of Health was signed by
Novo Nordisk in 2006 to begin a multi-programme Italian DAWN
project. It was the first such agreement in Italy; the only country
in the DAWN Study with active participation of the national health
ministry.
The DAWN Italy study included some other unique aspects. As well
as consulting patients, healthcare professionals and policymakers,
the Italy study gathered information from non-European immigrants,
regional healthcare administrators, pregnant women with diabetes,
and families of people with diabetes. The study was developed
with the full support of the Ministry of Health, the Italian scientific
diabetology societies, leading diabetologists, behaviourists, diabetes
educators, and diabetes associations.
Patients’ charter of rights, and more …
With the momentum from the DAWN study, all interested
organisations worked together to draft a Charter of Rights of people
with diabetes; based on the principles of the Universal Declaration
of Human Rights, and the European Charter of Patients’ Rights. The
Diabetes Charter has been officially endorsed by the Italian Senate
and adopted by Italian regions and local health authorities.
This Charter is an immensely important achievement. It sets clear
objectives for the rights, expectations and responsibilities of people
with diabetes; and also ideals for interaction between patients and
HCPs, actions for controlling and preventing diabetes, the need
for further research, and diabetes care in pregnancy, children and
young people, and for immigrants. Based on the Charter, the Italian
Senate unanimously approved a motion committing Government
to guarantee people with diabetes the same level of access to care
throughout Italy.
A national diabetes plan has now been drafted, including
requirements for patient education, and a national committee on
the rights of people with diabetes established. The Ministry is calling
for cultural change by all healthcare professionals towards correct,
patient-centred management of diabetes.
Other programmes include improving information systems to
provide the evidence for the changes needed in diabetes care,
and the Diabetes Education, Awareness and Leadership (DEAL)
programme.
Changing
healthcare
systems
• National healthcare policies should
grant the same priority to psychosocial
care as they do to clinical care.
• Diabetes management guidelines, reimbursement
systems, and healthcare quality systems should all
make provision for psychosocial wellbeing.
• Healthcare policymakers should be encouraged
to adopt the WHO-supported chronic care
model, and to implement its principles and those
of diabetes management guidelines in clinical
practice.
40  IMPLEMENTING THE DAWN STRATEGIES GLOBALLY
BAOJUN QI
Keeping a positive attitude
Baojun Qi has type 2 diabetes
Strategy 6: Take part in
psychosocial research in diabetes
Best practice: USA – Coached care for underserved communities
Strategy 6 of DAWN is concerned with developing and promoting
psychosocial research in diabetes.
Very substantial amounts are spent on basic research in diabetes,
but much less on behavioural research. Progress is still slow in the
uptake of understanding of psychological factors into routine clinical
practice. If it is to lead to evidence to support procedural change,
research related to the DAWN goals must be more relevant to the
issues central to policymakers, clinicians and patients36.
DAWN has supported research in many aspects of
psychosocial need: fundamental, clinical and practical, eg
• EURADIA – an alliance of professional diabetes organisations and
companies, has developed a database of research activities and
funding, and a roadmap for a recommended future strategy for
diabetes research in Europe between 2010–2019. The project has
recommended sustained monitoring and creation of a European
Diabetes Academy to coordinate European diabetes research.
• DAWN has long worked closely with the PSAD (PsychoSocial
Aspects of Diabetes) Study Group of the European Association for
the Study of Diabetes (EASD). Experts in this field have examined
and evaluated options for developing translational research. PSAD
also contributed substantially to the DAWN MIND study and
implementation of the DAWN MIND tool (see pages 14, 60).
• The European Depression in Diabetes (EDID) Research Consortium is
made up from multidisciplinary groups of European scientists, joining
within PSAD to enhance understanding of clinical depression in diabetes.
Through PSAD, DAWN also participates in the global Dialogue on
Diabetes and Depression, a programme gathering and assessing scientific
evidence and clinical experience from many countries.
• An example of individual research supported by the DAWN programme
is the minority ‘coached care’ study at the University of California,
Irvine40. Some minority groups in the USA are less involved in diabetes
self-care than the white majority; and suffer poorer health outcomes.
The project trains people with diabetes to support and encourage
others of the same ethnic group to ask more when they visit the
doctor. Coached patients become much better at seeking information,
and over time, show a dramatic improvement in their diabetes control.
Significant developments have been made in psychosocial, educational
and clinical research, but the radical change needed in healthcare has
still not been widely made. Future research in this area must be founded
on what would make a difference; what would provide the evidence to
change clinical practice and healthcare policy towards a view of the person
with fears and needs as well as a medical condition. Translational research
must address all of these aspects; it must be multidisciplinary, broad and
practical. This is the opening for a deeper understanding, which hopefully
should be informed and enabled by the work of DAWN 2.
Supporting
research
• More research evidence is needed to demonstrate
the importance of psychosocial wellbeing in
overall diabetes care – vague support of the
concept of wellbeing is not enough.
• New research should have tangible practical
relevance, eg trials relating behaviour with
diabetes management, measuring the public
health impact of psychological distress,
comparative studies of the performance
of health systems and evidence of the
use in practice of psychometric methods.
look
the
of
8
DAWN INITIATIVES
AROuND THE WORLD
Turkey:
Poland:
A published DAWN study in Turkey, Istanbul, using the ITAS
questionnaire (Barriers to Insulin Therapy) shows that psychological
barriers to starting insulin therapy are common in people with diabetes
in Turkey and are greater in people with depressive symptoms. The study
also shows that patients’ concerns about insulin in Turkey are very similar
to those in other countries, such as germany, the uSA and Japan.
Evaluation of the DAWN
‘psychodiabetological kit’ developed as
part of the Polish National Programme
to Support People with Diabetes showed
wide support from doctors. The kit is
made up of several short self-evaluation
methods to be used during routine
medical consultations. Doctors find the kit
supplements in the clinical diagnosis well.
The programme also runs conferences for
specialists and practical training workshops
for primary care HCPs – almost 3500 have
been trained in the use of psychosocial
assessment tools.
Japan:
The DAWN summits:
The Japanese DAWN website offers a
rich source of tools and information for
healthcare professionals on communicating
with patients and addressing psychosocial
issues. The tools include a guidebook on
talking and listening effectively to patients,
a self-assessment sheet for patients to
complete at the consultation, and leaflets
for patients to can take away.
Facilitating global dialogue towards patient-centred care.
ukraine:
greece:
Does culture make a difference in psychosocial assessment?
That was the question investigators posed as they explored the
effectiveness of a new DAWN assessment tool for addressing the
psychosocial needs in adults with diabetes in greece. The tool is
intended to stimulate discussions between healthcare professionals
and their patients to highlight problems that may interfere with
effective diabetes management. In addition to being easy to use,
cultural sensitivity and easy adaptation for use in different cultures
and countries globally were requirements.
In ukraine, NovoClubs for diabetes doctors and nurses are applying
the principles of positive psychology to achieve the DAWN vision
and improve psychosocial support for people with diabetes. Positive
psychology gives people with diabetes and their families powerful
skills for resolving conflicts – taking a positive approach can even be
life-saving.
uSA:
In the uS the DAWN programme has been used for nationwide
training and implementation such as: The national DAWN advisory
board, training programmes based on DAWN, CME and web activities,
and DAWN minority research. The webside cornerstones4care.com
was originally based on the DAWN call to action.
Spain:
Brazil:
Working with two Brazilian diabetes associations, Novo Nordisk
is developing educational materials about diabetes to be used
in health centres and schools. Young people with diabetes are
being encouraged and helped to build networks for information
and support, and a training programme for HCPs has also been
established on addressing psychosocial barriers.
The Fundación para la Diabetes (Spain’s independent diabetes
foundation) has designed teaching materials on diabetes and
managing emergency situations at home and at school. It also
runs psychology and diabetes workshops to provide support to
the parents of young people with diabetes; many of whom have
difficulties coping with their child’s condition. Parents also have
access to a website offering guidance on school-related issues and
psychological wellbeing.
The annual DAWN Youth Camp (My Camp
D) attracted almost 700 young people with
diabetes in summer 2008. Alongside a
wide range of sport and leisure activities,
workshops on aspects of living with diabetes
explore the many issues where young people
can meet difficulties. Living in the camp also
gives opportunities for informal discussion
and support from others facing the same
issues. The camp also raises public awareness
about diabetes through the attention of
politicians and the media. www.campd.de
DAWN India is working on a range of diabetes care initiatives,
including mobile clinics, camps and fairs. The DAWN objectives have
been publicised through TV, radio and a series of news articles and
advertorials in leading magazines. DAWN Youth India is developing
a survey on challenges in school for children with diabetes, and also
promoting improved psychological as well as medical support for
young people with diabetes throughout the country.
Italy:
Mexico:
Limited literacy in Mexico is a major
complication for patient education.
A DAWN project called HOPE (Health
Opportunities for People Everywhere)
developed a non-reading course that
educates people with diabetes in the skills
needed for self-care. After seeing the
benefits to their own diabetes control,
most then become peer educators; sharing
what they have learned with family and
friends, and challenging the common
belief that diabetes is fatal.
India:
germany:
Israel:
The Netherlands:
25,000 diabetes ’passports‘ promote better communication
between patients and HCPs in the Netherlands.
In order to remove barriers for taking
insulin among people with type 2 diabetes,
the DAWN team recruited the popular
actor Dudu Topaz, who has had diabetes
for 20 years and has been injecting for
the last 10 years. The campaign attracted
much media attention and a positive
response from both doctors and patients.
China:
A major education programme on diabetes is being used to
increase patients’ awareness and knowledge. Attending a
systematic programme of free lectures builds their understanding
of the condition, so that they can interact more effectively with
healthcare professionals and improve their quality of life.
A study about women with gestational
Diabetes was carried out in Italy as part of
the DAWN project. Conducted in 12 Italian
centres, the study was focusing on the
care and aid for women with gestational
Diabetes. The aim of the study was to
evaluate the psychosocial problems related
to gestational diabetes. The study involved
both Italian and immigrant women. Based
on the study the Italian DAWN advisory
board has developed a call to action in
partnerships with the Scientific Italian
diabetes Community.
South Africa:
DAWN Youth South Africa has addressed the daily problems of
children and adolescents by surveying 27 young people, aged
between 12 and 18 years, with type 1 diabetes; and their parents.
The survey revealed a series of psychosocial challenges, including
lack of sensitivity in other people to their problems, problems with
self-management and conflicts within families.
48 DAWN TOOLS FOR HEALTHCARE PROFESS ONALS
DAWN TOOLS FOR HEALTHCARE PROFESS ONALS 49
9
INTO
WORLD
DAWN
DAWN TOOLS FOR
HEALTHCARE PROFESSIONALS
The DAWN programme has nsp red the deve opment of a w de range of too s
for hea thcare profess ona s and the w der use of some a ready n ex stence
quality of life
for youth
WHO (Five) Well-Being Index
Questions about living with diabetes
Please indicate for each of the five statements which is closest to how you have been feeling over the last two weeks.
Notice that higher numbers mean better well-being.
The following questions are about how you see your life with diabetes. Circle the number that gives the best answer for you. Please provide an
answer for each question. Please bring the completed form with you to the next consultation where it will form the basis for a dialogue about
how you are coping with your diabetes.
Example: If you have felt cheerful and in good spirits more than half of the time during the last two weeks, put a tick in the box
with the number 3 in the upper right corner.
Patient name:
Patient name:
Completion date:
Completion date:
Interview date:
More than Less than
half of
half of
the time the time
All of
the time
Most of
the time
1. I have felt cheerful and in good spirits
5
4
3
2. I have felt calm and relaxed
5
4
3
Interview date:
Newer
Impact of symptoms relating to diabetes
WHO-5 Well-being Index
Som of
the time
At no
the time
2
1
0
2
1
0
3. I have felt active and vigorous
5
4
3
2
1
0
4. I woke up feeling fresh and rested
5
4
3
2
1
0
5. My daily life has been filled with things that interest me
5
4
3
2
1
0
WHO-5 - © Psychiatric Research UNIT, WHO Collaborating Center for Mental Health, Frederiksborg General Hospital, DK-3400 Hillerød
Why measure emotional well-being?
perceived quality of life and in its own right
Subjective well-being is an important dimension of overall perc
an important outcome of diabetes care. In people with diabetes emotional well-being may be comprostresses. Depression is common among persons
mised by the burden of living with diabetes and/or life stresse
with diabetes, affecting 10-20% of the patient population. Unfortunately the diagnosis of depression is
often missed by health care professionals. Using a short quest
questionnaire as the WHO-5 can help to monitor emotional well-being in patients as part of clinical routin
routine and enhance the likelihood of recognizing
depression. International clinical guidelines recommend to syst
systematically monitor emotional well-being
in patients with diabetes.
Very
seldom
Some
times
Often
All the
time
quality of life
for youth
Total score
0-12
How often do you…
1. Feel physically ill?
WHO 5 we be ng ndex
0
1
2
3
Questions about living with diabetes
4
2. Have a bad night’s sleep?
0
1
2
3
4
3. Miss school because of your diabetes?
0
1
2
3
4
0
1
2
3
4
Impact of treatment
The ”quality of life for youth” questionnaire
The achievement of good metabolic control
is difficult in children, and particularly in
adolescents. Having diabetes requires a
complex, intrusive and highly demanding
daily programme for families, which may
have a negative effect on Quality of Life
(QOL). Good Quality of Life is associated
with better metabolic control.
0-12
How often…
4. Do you feel pain associated with the treatment?
5. Does diabetes interfere with your family life?
0
1
2
3
4
6. Do you feel restricted by your diet?
0
1
2
3
4
Impact on activities
0-20
Why use the “quality of
life for youth” questionnaire?
It is vital that clinicians are able to assess
QOL and identify issues which may affect it,
particularly as these issues may not be
obvious during the clinical consultation. The
“quality of life for youth” questionnaire is a
valid assessment that enables the
identification of specific issues which are
negatively affecting QOL. It provides an
opportunity for enhanced communication
between the patient, family and diabetes
care team, and also an opportunity to
resolve these negative issues.
How often does diabetes...
Why the WHO-5?
The WHO-5 Well-being Index is a short, self-administered questionnaire covering 5 positively worded
items, related to positive mood (good spirits, relaxation), vit
vitality (being active and waking up fresh and
rested), and general interests (being interested in things). It has shown to be a reliable measure of emotional functioning and a good screener for depression. Administ
Administering the WHO-5 Well-being Index takes
2-3 minutes and can be integrated in clinical routine, both in primary and secondary care.
The measure is freely available in many languages (www.who-5.org)
7. Limit your social relationships and friendships?
0
1
2
3
4
8. Prevent you from bicycling or using a machine (e.g. a computer)?
0
1
2
3
4
9. Interfere with you exercising?
0
1
2
3
4
10. Interrupt your leisure time activities?
0
1
2
3
4
11. Prevent you from doing activities at school?
0
1
2
3
4
Parent issues
0-12
How often do you feel that your parents…
How to use the WHO-5?
It is advised to incorporate the WHO-5 in the annual review, as a measure of emotional well-being, in
combination with a diabetes-specific measure of distress, e.g. the PAID (Problem Areas In Diabetes) scale.
In addition, the WHO-5 can be applied ad hoc in situations wher
where there is a need for additional information on the patients’ mood.
12. Are too protective of you?
0
0
1
1
1
2
3
2
3
2
3
4
4
4
Worries about diabetes
0
16. You will have children?
0
17. You will not get a job you like?
0
18. You will faint or pass out?
0
1
1
1
1
2
2
2
2
3
3
3
3
4
4
4
4
19. You will be able to complete your education?
0
1
2
3
4
20. Your body looks different because of diabetes?
0
1
2
3
4
0
1
2
3
4
21. You will get complications?
Health perception
In order to monitor possible changes in well-being, a 10% difference can be regarded as a significant
change.
0-4
22. Compared with others your age, would you say your health is?
Excellent 1 Good 2
Fair 3 Poor 4
DQOLY-SF © 2006: H. Hoey, H. M. McGee, T. C. Skinner and S. E. Skovlund
Feeding back WHO-5 outcome
Feeding back the WHO-score to patients can help to validate the importance of well-being in the process
of diabetes self-management and address psychological issues.
The aim of discussing the score is not diagnose, but to feed ba
back and discuss the information in constructive, non-judgemental manner. The patient is invited to comment on the finding and reflect on the need
of help.
www.dawnstudy.com
How to use the “quality of
life for youth” questionnaire
The questionnaire can be used as part of
any routine diabetes consultation. The
young person can be asked to complete the
form at home or in the waiting room prior
to the consultation. The completed form
should be reviewed in the consultation by
the nurse, diabetologist or psychologist,
together with the child/adolescent. It can
be used to identify issues that may be
interfering with daily diabetes management
and quality of life and can help prompt a
dialogue about issues of particular concern
for the young person with diabetes. The
questionnaire can be used to obtain a
reliable quality of life score that can be
used to monitor changes over time and
individual response to changes in therapy.
0-28
15. You will get married?
Evidence suggests, a score of 50 or below is indicative for lo
low mood, though not necessarily depression.
A score of 28 or below indicates likely depression and warrants further assessment (diagnostic interview)
to confirm depression.
Your score:
0
13. Worry too much about your diabetes?
14. Act like diabetes is their disease, not yours?
How often do you worry about whether…
Each of the five items is rated on a 6-point Likert scale from 0 (= not present) to 5 (= constantly present).
Scores are summated, with raw score ranging from 0 to 25. Then the scores are transformed to 0-100 by
multiplying by 4, with higher scores meaning better well-being.
Thank you for your help!
To further enhance the focus on the young
person’s own agenda, an additional
question can be added at the end of the
form as follows: “Which topic would you
most like to discuss with your diabetes care
team today? (e.g. treatment related issues,
school, home, sport or other areas)”. This
question is not to be scored but can help
facilitate dialogue.
Frank Snoek, March 3, 2006 for DAWN/Novo Nordisk
INSTRUCTIONS: Which of the following diabetes issues are currently a problem for you?
Circle the number that gives the best answer for you. Please provide an answer for each question. Please bring the completed
form with you to your next consultation where it will form the basis for a dialogue about how you are coping with your diabetes.
Patient name:
Completion date:
Interview date:
Not a
problem
Minor Moderate
problem problem
0
1
Somewhat
serious
problem
Serious
problem
3
4
2
2. Feeling discouraged with your diabetes treatment plan?
0
1
2
3
4
3. Feeling scared when you think about living with diabetes?
0
1
2
3
4
4. Uncomfortable social situations related to your diabetes care (e.g., people telling you what to eat)?
0
1
2
3
4
5. Feelings of deprivation regarding food and meals?
0
1
2
3
4
6. Feeling depressed when you think about living with diabetes?
0
1
2
3
4
7. Not knowing if your mood or feelings are related to your diabetes?
0
1
2
3
4
8. Feeling overwhelmed by your diabetes?
0
1
2
3
4
9. Worrying about low blood sugar reactions?
0
1
2
3
4
10. Feeling angry when you think about living with diabetes?
0
1
2
3
4
11. Feeling constantly concerned about food and eating?
0
1
2
3
4
12. Worrying about the future and the possibility of serious complications?
0
1
2
3
4
13. Feelings of guilt or anxiety when you get off track with your diabetes management?
0
1
2
3
4
14. Not “accepting” your diabetes?
0
1
2
3
4
15. Feeling unsatisfied with your diabetes physician?
0
1
2
3
4
Ways to identify patient emotional distress
Diabetes can be demanding and cause emotional distress. It is vital that clinicians are able to identify diabetes-related emotional
distress in their patients. Validated practical strategies are available to promote an open dialogue and help to flag when serious
emotional distress exists.
One tool that has proven very helpful to healthcare professiona
professionals is the Problem Areas in Diabetes (PAID) scale, a simple, onepage questionnaire.
Why the PAID scale?
PAID has high acceptability and scientific validity as evidenced by more than 60 scientific papers and scientific research abstracts.
The PAID measure of diabetes related emotional distress correlates with measures of related concepts such as depression, social
support, health beliefs, and coping style, as well as predicts future blood glucose control of the patient.
The questionnaire has proven to be sensitive to detect changes over time following educational and therapeutic interventions.
What is the PAID scale?
The PAID is a self-report pencil and paper questionnaire that contains 20 items that describe negative emotions related to diabetes (e.g. fear, anger, frustration) commonly experienced by patients with diabetes. Completion takes approximately five minutes.
16. Feeling that diabetes is taking up too much of your mental and physical energy every day?
0
1
2
3
4
0
1
2
3
4
Novo Nordisk 2006. Adapted from DAWN Interactive 2. Text by Frank Snoek and Garry Welch.
0
1
2
3
4
0
1
2
3
4
20. Feeling “burned out” by the constant effort needed to manage diabetes?
0
1
2
3
4
For ongoing monitoring and comparison to
normative scores, standardised scores with
a range from 0-100 can be calculated as
follows:
Total QOL Impact score: 100 *
(raw total score - 21) / 84
• Impact of symptoms: 100 *
(raw score – 3) / 12
• Impact of treatment: 100 *
(raw score – 3) / 12
• Impact of activities: 100 *
(raw score – 7) / 28
• Parent issues: 100 *
(raw score – 3) / 12
• Worries about diabetes: 100 *
(raw score – 5) / 20
• The self-rated health perception question
is treated separately and standardised to
1-100 as follows: Score= 100 *
(raw score-1)/3
Further information about the Hvidøre
Study Group on Childhood Diabetes:
hvidoeregroup.org
The quality of life for youth questionnaire
was developed with the Hvidøre Study
Group on Childhood Diabetes. The
questionnaire is now being used to
implement evaluation of QOL in diabetes
treatment as part of DAWN Youth, a global
Novo Nordisk initiative in partnership with
the International Diabetes Federation (IDF)
and the International Society for Paediatric
and Adolescent Diabetes (ISPAD).
The DAWN Youth initiative seeks to improve
psychosocial support for young people with
diabetes and their families through
promotion of evidence-based tools and
strategies for paediatric psychosocial
diabetes management.
Qua y o e o you h
– ques ons abou v ng
w h d abe es
A good e w h d abe es
– a se he p cop ng oo
The ch d en s c c e oo
nsu n d a ogue oo k
DAWN You h T a n he
T a ne scheme
DAWN M ND p og amme
DAWN ac
DAWN M ND You h p og amme
M
W ™
™
mm
For more information, please access
dawnyouth.com
*1) Reference: Skinner, T. C., Hoey, H.,
McGee, H. M., Skovlund, S. E.: A short form
of the quality of life for youth
questionnaire: exploratory and confirmatory
analysis in a sample of 2,077 young people
with type 1 diabetes mellitus. Diabetologia,
Vol. 49, pp. 621-628, 2006.
*2) Copies of the questionnaire are
available in the following languages:
Danish, Dutch, English (North American and
UK), Finnish, French, German, Italian,
Japanese, Macedonian, Norwegian,
Portuguese, Spanish and Swedish.
A high score indicates a high negative
impact on QOL.
let’s talk
about you
P ob em a eas n d abe es
ques onna e PA D
The children’s circle tool
The children’s circle tool is designed to stimulate
dialogue between the diabetes support team,
children and young people with diabetes and
their families. It focuses on non-medical issues
which impact upon quality of life and diabetes
self-management. It is a simple tool which
can be used in a flexible way to support both
young people and their parents’ involvement in
defining wishes and needs for a better life with
diabetes. Some simple but powerful dialogue
techniques are shared below.
Using the children’s circle tool
The children’s circle tool focuses on the six
main areas which interact in the life of a child
or young person with diabetes: the child, their
family, their diabetes support team, their school,
their local community, their friends and leisure
activities and their cultural or local traditions.
The circles illustrate how these different aspects
of the child’s life affect each other and influence
the treatment and well-being of the child and
the family. These are important topics for
dialogue between the diabetes care team and
the family.
Scoring of the questionnaire
Each question has five possible answers with a value from 0 to 4, with 0 representing “no problem” and 4 “a serious problem”.
The scores are added up and multiplied by 1.25, generating a total score between 0 – 100. Patients scoring 40 or higher may
be at the level of “emotional burnout” and warrant special attention. PAID scores in these patients may drop 10-15 points in
response to educational and medical interventions.
An extremely low score (0-10) combined with poor glycaemic cont
control may be indicative for denial.
17. Feeling alone with your diabetes?
18. Feeling that your friends and family are not supportive of your diabetes management efforts?
Diabetes is different for children
Problem Areas in Diabetes Questionnaire (PAID)
How to use the PAID scale?
In a clinical setting, the PAID can be administered routinely (e.g. annual review) and/or ad hoc as a diagnostic tool.
The patient can be asked to complete the questionnaire before consultation (waiting room) or at the beginning of the consultation.
Together with the patient, the clinician can calculate the total score and invite the patient to elaborate on problem areas that
stand out (high scores) and explore options for overcoming the identified issues. This may include referral to a mental health
specialist.
19. Coping with complications of diabetes?
Scoring of the questionnaire
Each item has five possible scores with a
value from 0 to 4, with 0 representing
‘never’ and 4 ‘all the time’. Higher scores
indicate a more negative impact of diabetes
and poorer QOL, and lower scores indicate
greater QOL. The scoring of each subscale
is done separately by summation of scores
for each item within the subscale. Emphasis
on a score for each subscale, as opposed to
a total score, puts a greater emphasis on
each item and subscale and thus highlights
a problem in a single area.
Questionnaire availability
The questionnaire is available in many
languages from the Hvidøre Study Group
on Childhood Diabetes (*2). Please contact
questionnaire administrator Mette Bauditz,
Corporate Responsibility, Novo Nordisk, to
obtain a user agreement form for research
purposes and further information. E-mail:
[email protected].
children’s
circle tool
Problem Areas in Diabetes Questionnaire (PAID)
1. Not having clear and concrete goals for your diabetes care?
What is the “quality of
life for youth” questionnaire?
The “quality of life for youth” questionnaire
was developed from the revised 52 item
DCCT Diabetes QOL for Youth
Questionnaire (*1). This shorter form is a
more precise version with improved
construct validity and with items known
to be associated with metabolic control.
It has been validated for children and
adolescents aged 10-18 years and has been
translated into 16 languages to date (*2).
The questionnaire is quick and easy to score
and allows comparisons across countries
and cultures.
By illustrating how these circles are related,
you can spark meaningful dialogue with children
and their parents. This form of conversation
will reveal potential barriers to effective diabetes
management and will provide a platform for
you to discuss possible measures and available
support structures. The children’s circle tool is
designed to inspire your conversation, so you
can either follow the sequence outlined below,
or improvise to follow the course of your
conversations.
The children’s circle tool is best implemented
by using open-ended questions, e.g.:
is the most important thing
•  W
  hat is the most important thing to talk 
about today?
do these different areas
•  H
  ow do these different areas interact with 
the child’s diabetes management?
which areas are things going
•  I n which areas are things going really well?
in which areas are things
•  A
  nd in which areas are things not going so 
well?
which areas do the diabetes
•  I n which areas do the diabetes care team, the 
family and the child believe that improvement
can be made through a collaborative effort?
PAID - © 1999 Joslin Diabetes Center
www.dawnstudy.com
Asking
open-ended questions can
Asking open-ended questions can help to identify 
barriers to effective diabetes management and
Each page of the map can be torn out and
given to the child or parent at the end of the
consultation to provide a visual reminder of the
talk. It may be helpful for them to write down
notes and sketch action plans on the actual map
so they can take them home at the end of the
consultation and refer to them later.
for educating the school personnel and relevant
others about the child’s diabetes. This should not
mean the child misses out on the health and social
benefits of an active lifestyle, and they should be
encouraged to pursue sporting activities as far as
is safe and practical. Parents and school personnel
also play a key role in promoting diabetes
awareness amongst the child’s peer group so that
they can establish emotionally supportive and
understanding friendships.
The key spheres of responsibility are:
Child
The child or young person with diabetes is the
centre of attention in the consultation, and this
is reflected with the child being positioned in the
very center of the illustration. Understanding the
child’s wishes and needs in regard to each of the
circles provides a good platform for identifying
the best ways to improve the child’s quality of
life. It is valuable to consider how the child’s age
affects their ability to cope with the challenges
represented by the illustrations in the map.
Community
The local community can provide a wider, social
sphere of support for the child and their family,
and includes the child’s social networks and
involvement in community initiatives. Community
activities such as children and family camps, peer
support programmes for parents and families
and other special educational initiatives are often
available to families with children with diabetes.
Making use of local activities requires knowledge
about their existence and encouragement and
means to attend.
Family
The family is the child’s primary support team.
Understanding the parents’ perspective on their
child’s diabetes management, and how the family
works together to manage diabetes at home,
is key to developing a realistic, well-functioning
treatment plan. It is equally important to
understand the parents’ concerns and need for
emotional and educational support to take on the
role as coach and supervisor for the child.
Culture
The culture circle represents the wider community
the child’s family is part of. It includes religion
and ethnic traditions which may impact upon
things such as dietary habits, stigmas regarding
illness, attitudes to health care and other factors.
Important culture-specific barriers or opportunities
for improving diabetes management may be
identified by talking about these issues.
lead to agreement on specific actions or support
activities that may be relevant.
Diabetes Support Team
The diabetes support team is responsible for
providing the medical treatment and ongoing
self-management, educational, emotional and
psychological support. Children with diabetes
and their families depend on a diabetes support
team which listens to their anxieties and provides
age-appropriate information and emotional
support tailored to their specific needs.
School, Sport Activities and Friends
Every child with diabetes requires a safe and
supportive educational environment that
understands and cares for their needs. Parents,
health professionals, school personnel and local
authorities all have a role to play in ensuring that
children with diabetes are cared for and supported
24 hours a day. It should always be clear who
is responsible for helping and keeping the child
safe during school hours and who is responsible
The children’s circle tool was developed by
DAWN Youth, a global Novo Nordisk initiative
in partnership with the International Diabetes
Federation (IDF) and the International Society for
Pediatric and Adolescent Diabetes (ISPAD). It is
based on the ecological model Bronfenbrenner,
U. Harvard University Press 1979 and an
adaptation of this developed by Dr Barbara
Anderson, a member of the international DAWN
Youth Steering Committee.
The DAWN Youth initiative aims to improve the
quality of life and health of young people with
diabetes by focusing more on the psychosocial
aspect of managing the condition. The DAWN
Youth initiative drives advocacy, research,
concrete initiatives and better practices worldwide for better child-centered diabetes care.
W
For more information, please see
dawnyouth.com
4413_Blok.indd 2
07/07/08 13:49:16
Reflection sheet
Room for diabetes in your life
Patient name:
Completion date:
Interview date:
My diabetes has taken up
so much room up to now
My diabetes will take up so
much room in the future
(mark the area)
(mark the area)
Room for diabetes in your life
‘Room for diabetes in your life’ is one of 20 reflection sheets developed as a major part of a decision
been tested by nurses and people with
making method called Guided Self-Determination (GSD). GSD has b
one-to-one setting and in group training.
type 1 diabetes and persistent poor glycaemic control both in o
Both qualitative evaluation and a randomized controlled trial cconfirmed the impact of GSD on people’s
life skills and A1C.
Diabetes can take up room in good and bad ways
Lack of acceptance and lack of having integrated diabetes into life often go together and this may be
control.
the main reason why patients are living with poor glycaemic con
Room o d abe es n you
e
What if you don’t know what you don’t know?
Often the barriers to diabetes self-management remain hidden because we
haven't asked the right questions. Healthcare providers recognise that there
is only limited time available for a meaningful dialogue between patient and
provider, but as shown in the DAWN study they believe these issues are
important.
With only 5 to 10 minutes per average consultation, asking individual
patients “What is the most difficult part of living with diabetes?” or “What
are your greatest concerns about your diabetes?” can often get right to the
heart of the matter in a few minutes.
“Room for diabetes in your life” may help patients become able to distinguish between negative and
positive ways that diabetes can take up room. A negative way ma
may for instance be taking up room in
the form of bad conscience and fear of late complications. A po
positive way may for instance be taking
up room in planning and acting. This awareness may cause an ove
overall decision to let diabetes take up
room in a positive way. This provides a chance to make self-determined decisions about specific changes
required.
We invite you to conduct an experiment by asking one of those questions to
at least three of your patients. Use the DAWN Experiment to help you along.
DAWN Programme.
The DAWN Programme is a global Novo Nordisk initiative in collaboration
with the International Diabetes Federation (IDF) and an expert advisory panel.
It began with the DAWN study in 2001, which involved more than 5000 people
with diabetes and more than 3800 healthcare professionals in 13 countries.
The key finding from the DAWN study was that to improve health outcomes,
we must address the people behind the disease.
The sheet may even help some patients express their first acceptance of diabetes.
What is the difference?
The DAWN expe men
The DAWN Experiment
1. Ask
Ask your patient “What is the most difficult part of having diabetes for you?”
Follow with: “Tell me more about t
The challenge is to quickly learn the most important issues from the patient’s
perspective so that the treatment plan can be a truly collaborative effort.
The result of this collaboration is the creation of a mutually agreed plan that
addresses the patient’s priorities and ensures quality diabetes care.
Why “Room for diabetes in your life”
Some patients are intensely concerned about their disease and tthis may constitute a considerable part
of their problem. Apparently professionals find this reaction too difficult to talk about and accordingly
do not comment on it. Likewise it seems difficult for them to approach the opposite problem of patients
tending to neglect their diabetes.
How to use “Room for diabetes in your life”
Patients require time to fill it out at home before a conversation with a professional. They are supposed
to judge how much room diabetes currently takes up in their lif
life by shading the corresponding area of
the oval shape and to do the same for their intentions about ho
how much room to give diabetes in future.
They can, however, do it in many creative ways. Additionally patients are supposed to write what the difference will be.
Today, the DAWN Programme aims to translate the findings from the survey
into concrete actions that will improve the lives of people with diabetes.
The DAWN experiment is an adaptation of ideas presented in "The Art of Empowerment:
Stories and Strategies for Diabetes Educators" by Bob Anderson EdD and Marti Funnell MS,
RN, CDE published by the American Diabetes Association, 2000.
For more information on the DAWN Programme visit: www.dawnstudy.com
Zoffmann 2004, Zoffmann in press.
Zoffmann 2004, Zoffmann in press
www.dawnstudy.com
Reflection sheet
Your plans to change your way of life
Mark sentences describing your everyday life with an X in the left-hand column.
Indicate whether you would like to change behaviour in the right-hand columns (also with an X)
Patient name:
Completion date:
one person at a time
Interview date:
Your plans to change your way of living
I will like to change
Characteristics
of my
everyday life:
within the
first month
I do not eat the meals I need according to my treatment
I do not adjust my insulin when what I drink and eat contains
more carbohydrates than normal
I eat too much when my blood glucose is low
I do not exercise enough
I some times do not take the amount of insulin I need
I do not adjust my intake of insulin or food enough in
connection with exercise
within the
first 6 months
after the
first 6 months
I have no
plans for
changing my
behaviour
‘Your plans to change your way of living’ is one of 20 reflection sheets developed as a major part of a
(GSD). GSD has been tested by nurses and
decision making method called Guided Self-Determination (GSD)
control both in one-to-one setting and in
people with type 1 diabetes and persistent poor glycaemic contr
controlled trial confirmed the impact of
group training. Both qualitative evaluation and a randomized co
GSD on people’s life skills and A1C.
To overcome the barriers to change
The recommended way of living with diabetes comprises many aspe
aspects, and each person with diabetes
recommendations. Changing way of living is
meets unique challenges in daily life to integrate those recomm
confirmed that internal motivation facilitates
hard, but research based on ‘self-determination theory’ has con
accomplishment and maintenance of change.
The need to change will depend on nature and numbers of recomme
recommendations yet not integrated. Readiness to change depends on the person’s own judgment and choice and can be pictured by themselves
and others through their answer to questions about if and when they want to integrate recommendations yet not integrated.
I am overweight
Why using ‘Your plans to change your way of living’
Traditional conversations about the patients’ way of living are time consuming and their effectiveness
and appropriateness to accomplish changes can be questioned. ‘Your plans to change your way of living’
provides a quick overview of each person’s needs and readiness to change.
I smoke
I have problems with alcohol
I discover low blood glucoses too late
I do not check my blood or urine as recommended
I am often under harmful stress
The questions signal respect for the patient’s personal choices and accordingly facilitate autonomous
motivation.
The sheet helps patient and professionals to prioritize – where to start.
How to use ‘Your plans to change your way of living’
Patients prepare themselves by filling out the sheet at home before a conversation with a professional.
It is important to respect choosing not to change an area and tto be sure that patients who say they will
change, are internally motivated and have found their own reaso
reasons for changing. Unrealistic plans must
be challenged for instance if many recommendations are intended to be integrated at a time.
I some times do not take prescribed medication
Total:
Zoffmann 2004, Zoffmann in press
Zoffmann 2004, Zoffmann in press.
P ans o change you way o
e
Assessment of Primary Care Resources and Supports
for Chronic Disease Self-Management (PCRS)
Background:
• The PCRS is a tool to help clinics assess the level to which self-management is integrated into their
practice, and to help clinics focus on actions that can be taken to support self-management.
• Itisforusebymultidisciplinaryteams(clinicalandsupportstaffwhoworktogether).
• Eachmemberoftheteamindependentlycompletestheassessment.
• Theteamthenmeetstodiscusstheirscores.Discrepanciesinscoresofferanimportantopportunity
fordiscussionthatcanleadtoimprovedcommunicationandteamfunction.Discrepanciesorlow
scores also suggest areas for improvement.
• ThePCRShastwosectionsinvolvingatotalof16characteristicsforassessment:
– Patient Support: Eight characteristics of service delivery found to enhance patient self-management
(i.e., be better able to manage their condition, their emotional health and their daily activities
and roles).
– Organisational Support: Eight system design issues that primary care organisations must address
in their planning, resource allocation, and evaluation to support the delivery of self-management
services.
Instructions:
• Usingthe1–10scaleineachrow,giveone numeric rating for each of the 16 characteristics.
• Whenconsideringyourresponsestoeachcharacteristic,usetheprevious 3 months as the
timeframe.
• Eachcharacteristichasfourlevelsofperformance:
– Disthelowestlevel;itisanindicationofinadequatenon-existentactivity.
– Cpertainstothepatient-providerlevel.Atthislevel,implementationissporadicorinconsistent;
patient-provider interaction is passive.
– Bpertainstotheteamlevel.Atthislevel,implementationisdoneinanorganisedandconsistent
manner,usingateamapproach;servicesarecoordinated.
– Aisthehighestlevel;itassumestheBlevelplus strong systems integration.
• WiththeexceptionoflevelD,ineachlevelyoucanselectfrom3numbers.Thisallowsyouto
consider to what degreeyourteamismeetingthecriteriadescribedforthatlevel.Forexample,
how much of the criteria your team meets and/or how consistently your team does so.
I. Patient support
Characteristic
1. Individualised
Assessmentof
Assessment
of
D
is not
done
Patient’s
Patient’s
Self-Management
Educational
Needs
Needs
1
2. Patient
Self-Management
Education
does not
occur
3. Goal Setting/
ActionPlanning
Action Planning
is not
done
4. ProblemSolving Skills
are not
taught or
practised
with
patients
5. Emotional
Health
(e.g., depression,
anxiety,stress,
anxiety, stress,
family conflicts)
is not
assessed
6. Patient
Involvement
does not
occur
1
1
1
1
C
B
is not standardised and/or
does not consistently include
most self-management
components
2
3
4
occurs sporadically or without
tailoring to patient skills,
culture, educational needs,
learning styles or resources
2
3
4
occurs but goals are
established primarily by
healthcare team rather than
collaboratively with patients
2
3
4
are taught & practised
sporadically or used by only a
few team members
2
3
4
A (= all of B plus these)
is standardised, fairly
comprehensive & documented
beforesettinggoals;
considers language, literacy &
culture;assessesknowledge,
behaviours, confidence,
barriers, resources & learning
preferences
5
6
7
5
6
7
is done collaboratively
with all patients/families &
member(s) of their healthcare
team;goalsarespecific,
documented & available to
any team member, goals
are reviewed & modified
periodically
3
4
5
5
6
6
7
7
5
6
7
ispassive;clinicianoreducator is central to decisions about
directs care with occasional
self-management goals
patient input
& treatment options &
encouraged by healthcare
team & office staff
Developed by the Robert Wood Johnson Foundation Diabetes Initiative, March 2006 – www.diabetesinitiative.org
Copyright © 2006 Washington University in St. Louis School of Medicine.
1
7. Patient Social
Support
is not
addressed
8.LinkingTo
Linking To
Community
does not
occur
www.dawnstudy.com
1
Resources
Resources
1
2
3
4
5
6
7
is discussed in general terms,
is encouraged through
not based on an assessment of collaborativeexplorationof
patient needs or resources
available resources
(e.g., significant others,
education/support groups) to
meet individual needs
2
3
4
is limited to a list or pamphlet
of contact information for
relevant resources
2
3
4
8
8
9
9
10
10
is an integral part of care,
goals are systematically
reassessed & discussed
withpatient;progressis
documented in patient notes
8
9
10
are routinely taught &
isanintegralpartofcare;
practised using evidence-based takes into account family,
approaches & reinforced by
community & environmental
healthcare team members
factors;resultsaredocumented
& routinely used for planning
with patient
isnotroutinelyassessed;
assessment is integrated
screening & treatment
into practice & pathways
protocols are not standardised established for treatment &
orarenonexistent
referral;patientsareactively
involved in goal setting
&choices;teammembers
reinforce consistent goals
2
is an integral part of planned
care;resultsaredocumented,
systematically reassessed
& used for planning with
patient
plan is developed with patient is documented in patient
(& family if appropriate)
notes, is an integral part of
based on individualised
patient care plan, involves
assessment;isdocumentedin family & community resources
patientnotes;andallteam
& is systematically evaluated
members reinforce same key
for effectiveness
messages
5
6
7
8
9
10
systems are in place to assess,
intervene & monitor patient
progress & coordinate among
providers;standardised
screening & treatment
protocols are used
8
9
10
is an integral part of the
systemofcare;isexplicitto
patients;isaccomplished
through collaboration among
patient&teammembers;
considers environmental,
family or community barriers
& resources
8
9
10
system in place to assess
needs, link patients with
services & follow up on
social support plans using
household, community, or
other resources
8
9
10
occurs through a referral
system in place for
system;teamdiscussespatient coordinated referrals, referral
needs, barriers & resources
follow-up & communication
before making referral
among practices, resource
organisations & patients
5
6
7
8
9
10
Assessmen o p ma y ca e
esou ces and suppo o ch on c
d sease se managemen PCRS
a o s oo k
50 DAWN TOOLS FOR HEALTHCARE PROFESSIONALS
DAWN TOOLS FOR HEALTHCARE PROFESSIONALS 51
WHO-5
WELLBEINg INDEx
PROBLEM AREAS IN DIABETES
QuESTIONNAIRE (PAID)
(DAWN goal 1)
How have you been feeling?
WHO-541 is a short assessment, asking for responses to five
statements about how the patient has felt in the last two weeks.
These are designed to reveal the level of positive mood, vitality and
generally being interested in life. They can be used routinely in just
2–3 minutes to detect signs of depression, and the test has been
shown to be a sound measure of emotional wellbeing. It should be
part of the diabetes annual review; ideally in combination with a
diabetes-specific test eg PAID (Problem Areas In Diabetes).
The response to each statement, eg ‘I have felt calm and relaxed’
is chosen from 0 (never) to 5 (all of the time). The scores are added
and converted to a percentage. A final score under 50 indicates a
low mood, and 28 or less suggests depression that justifies further
assessment. A 10% change in score is regarded as significant.
Discussing the result with the patient is recommended, to reinforce
the importance of wellbeing in diabetes management and to
address any psychological problems.
(DAWN goal 1)
Is diabetes getting you down?
WHO (Five) Well-Being Index
Please indicate for each of the five statements which is closest to how you have been feeling over the last two weeks.
Notice that higher numbers mean better well-being.
Example: If you have felt cheerful and in good spirits more than half of the time during the last two weeks, put a tick in the box
with the number 3 in the upper right corner.
Patient name:
Completion date:
Interview date:
More than Less than
half of
half of
the time the time
All of
the time
Most of
the time
1. I have felt cheerful and in good spirits
5
4
3
2. I have felt calm and relaxed
5
4
3
3. I have felt active and vigorous
5
4
3
4. I woke up feeling fresh and rested
5
4
5. My daily life has been filled with things that interest me
5
4
WHO-5 Well-being Index
Som of
the time
At no
the time
2
1
0
2
1
0
2
1
0
3
2
1
0
3
2
1
0
WHO-5 - © Psychiatric Research UNIT, WHO Collaborating Center for Mental Health, Frederiksborg General Hospital, DK-3400 Hillerød
Why measure emotional well-being?
perceived quality of life and in its own right
Subjective well-being is an important dimension of overall perc
an important outcome of diabetes care. In people with diabetes emotional well-being may be comprostresses. Depression is common among persons
mised by the burden of living with diabetes and/or life stresse
with diabetes, affecting 10-20% of the patient population. Unfortunately the diagnosis of depression is
questionnaire as the WHO-5 can help to monioften missed by health care professionals. Using a short quest
routine and enhance the likelihood of recognizing
tor emotional well-being in patients as part of clinical routin
systematically monitor emotional well-being
depression. International clinical guidelines recommend to syst
in patients with diabetes.
Why the WHO-5?
The WHO-5 Well-being Index is a short, self-administered questionnaire covering 5 positively worded
vitality (being active and waking up fresh and
items, related to positive mood (good spirits, relaxation), vit
rested), and general interests (being interested in things). It has shown to be a reliable measure of emoAdministering the WHO-5 Well-being Index takes
tional functioning and a good screener for depression. Administ
2-3 minutes and can be integrated in clinical routine, both in primary and secondary care.
The measure is freely available in many languages (www.who-5.org)
How to use the WHO-5?
It is advised to incorporate the WHO-5 in the annual review, as a measure of emotional well-being, in
combination with a diabetes-specific measure of distress, e.g. the PAID (Problem Areas In Diabetes) scale.
where there is a need for additional informaIn addition, the WHO-5 can be applied ad hoc in situations wher
tion on the patients’ mood.
Each of the five items is rated on a 6-point Likert scale from 0 (= not present) to 5 (= constantly present).
Scores are summated, with raw score ranging from 0 to 25. Then the scores are transformed to 0-100 by
multiplying by 4, with higher scores meaning better well-being.
Your score:
low mood, though not necessarily depression.
Evidence suggests, a score of 50 or below is indicative for lo
A score of 28 or below indicates likely depression and warrants further assessment (diagnostic interview)
to confirm depression.
In order to monitor possible changes in well-being, a 10% difference can be regarded as a significant
change.
www.dawnstudy.com
Feeding back WHO-5 outcome
Feeding back the WHO-score to patients can help to validate the importance of well-being in the process
of diabetes self-management and address psychological issues.
back and discuss the information in construcThe aim of discussing the score is not diagnose, but to feed ba
tive, non-judgemental manner. The patient is invited to comment on the finding and reflect on the need
of help.
Frank Snoek, March 3, 2006 for DAWN/Novo Nordisk
While the WHO-5 test can be used for any condition, PAID42
relates specifically to diabetes; it is very acceptable in use and has
high scientific validity. Its results relate well to other measures of
depression and style of coping, and can be even used to predict
future patient blood glucose control.
PAID presents 20 statements on the patient’s possible negative
feelings about diabetes, eg ‘Feeling overwhelmed by your diabetes?’,
and asks for responses on a scale from 0 (no problem) to 4 (serious
problem). The total score is converted to a final percentage. Scores
of 40 or higher may signify emotional burnout, warranting special
attention; concersely a very low score (0–10) combined with poor
glycaemic control may indicate denial.
Problem Areas in Diabetes Questionnaire (PAID)
INSTRUCTIONS: Which of the following diabetes issues are currently a problem for you?
Circle the number that gives the best answer for you. Please provide an answer for each question. Please bring the completed
form with you to your next consultation where it will form the basis for a dialogue about how you are coping with your diabetes.
Patient name:
Completion date:
Interview date:
Somewhat
serious
problem
Serious
problem
1. Not having clear and concrete goals for your diabetes care?
0
1
2
3
4
2. Feeling discouraged with your diabetes treatment plan?
0
1
2
3
4
3. Feeling scared when you think about living with diabetes?
0
1
2
3
4
Not a
problem
Minor Moderate
problem problem
4. Uncomfortable social situations related to your diabetes care (e.g., people telling you what to eat)?
0
1
2
3
4
5. Feelings of deprivation regarding food and meals?
0
1
2
3
4
6. Feeling depressed when you think about living with diabetes?
0
1
2
3
4
7. Not knowing if your mood or feelings are related to your diabetes?
0
1
2
3
4
8. Feeling overwhelmed by your diabetes?
0
1
2
3
4
9. Worrying about low blood sugar reactions?
0
1
2
3
4
10. Feeling angry when you think about living with diabetes?
0
1
2
3
4
11. Feeling constantly concerned about food and eating?
0
1
2
3
4
12. Worrying about the future and the possibility of serious complications?
0
1
2
3
4
13. Feelings of guilt or anxiety when you get off track with your diabetes management?
0
1
2
3
4
14. Not “accepting” your diabetes?
0
1
2
3
4
Problem Areas in Diabetes Questionnaire (PAID)
Ways to identify patient emotional distress
Diabetes can be demanding and cause emotional distress. It is vital that clinicians are able to identify diabetes-related emotional
distress in their patients. Validated practical strategies are available to promote an open dialogue and help to flag when serious
emotional distress exists.
professionals is the Problem Areas in Diabetes (PAID) scale, a simple, oneOne tool that has proven very helpful to healthcare professiona
page questionnaire.
Why the PAID scale?
PAID has high acceptability and scientific validity as evidenced by more than 60 scientific papers and scientific research abstracts.
The PAID measure of diabetes related emotional distress correlates with measures of related concepts such as depression, social
support, health beliefs, and coping style, as well as predicts future blood glucose control of the patient.
The questionnaire has proven to be sensitive to detect changes over time following educational and therapeutic interventions.
What is the PAID scale?
The PAID is a self-report pencil and paper questionnaire that contains 20 items that describe negative emotions related to diabetes (e.g. fear, anger, frustration) commonly experienced by patients with diabetes. Completion takes approximately five minutes.
Scoring of the questionnaire
Each question has five possible answers with a value from 0 to 4, with 0 representing “no problem” and 4 “a serious problem”.
The scores are added up and multiplied by 1.25, generating a total score between 0 – 100. Patients scoring 40 or higher may
be at the level of “emotional burnout” and warrant special attention. PAID scores in these patients may drop 10-15 points in
response to educational and medical interventions.
control may be indicative for denial.
An extremely low score (0-10) combined with poor glycaemic cont
15. Feeling unsatisfied with your diabetes physician?
0
1
2
3
4
16. Feeling that diabetes is taking up too much of your mental and physical energy every day?
0
1
2
3
4
17. Feeling alone with your diabetes?
0
1
2
3
4
How to use the PAID scale?
In a clinical setting, the PAID can be administered routinely (e.g. annual review) and/or ad hoc as a diagnostic tool.
The patient can be asked to complete the questionnaire before consultation (waiting room) or at the beginning of the consultation.
Together with the patient, the clinician can calculate the total score and invite the patient to elaborate on problem areas that
stand out (high scores) and explore options for overcoming the identified issues. This may include referral to a mental health
specialist.
18. Feeling that your friends and family are not supportive of your diabetes management efforts?
0
1
2
3
4
Novo Nordisk 2006. Adapted from DAWN Interactive 2. Text by Frank Snoek and Garry Welch.
19. Coping with complications of diabetes?
0
1
2
3
4
20. Feeling “burned out” by the constant effort needed to manage diabetes?
0
1
2
3
4
PAID - © 1999 Joslin Diabetes Center
www.dawnstudy.com
The PAID test should be part of the annual review and can also be
useful occasionally as a diagnostic tool. Discussion of the results
between patient and doctor can be a good opportunity to explore
particular issues, and may need referral to a mental health specialist.
PAID
WHO-5
• Twenty short, negatively-worded statements
• Five short, positively-worded statements
• Easy for the patient to align with his/her own
feelings
• Easy for the patient to decide how well
(or badly) they fit his/her general mood
• Easy to work out score
• Easy to use as basis for discussion.
• Provides the opportunity to define the greatest
concerns about diabetes
• Offers basis for discussion or referral for
specialist help.
52 DAWN TOOLS FOR HEALTHCARE PROFESSIONALS
DAWN TOOLS FOR HEALTHCARE PROFESSIONALS 53
ROOM FOR DIABETES
IN YOuR LIFE
PLANS TO CHANgE
YOuR WAY OF LIFE
(DAWN goal 1)
Is diabetes a big part of your life?
This well-validated tool43 is designed to help diabetes patients gain
understanding of the feelings about diabetes, by using a ‘reflection
sheet’ developed through the decision-making method called
guided self-determination (gSD). It is based on the understanding
that the amount of ‘room’ diabetes takes in life can be viewed in
positive ways (time taken for planning and taking action) or negative
ways (disproportionate worry, guilt feelings or fear). Not having
reached acceptance of diabetes and integrated it into daily life can
mean that too little room is allocated to it and the patient may not
achieve good glycaemic control.
The tool involves asking the patient to shade in an area of a given
oval shape that corresponds to the amount of room diabetes takes
in their life, and to do the same for the amount of room they intend
to give diabetes in the future. They are also asked to write about the
difference. using the reflection sheet in advance gives a structure for
discussion with the healthcare professional.
(DAWN goal 1)
What would you like to change?
Reflection sheet
Room for diabetes in your life
Reflection sheet
Your plans to change your way of life
Like Room for diabetes in your life, Plans to change your way of life
is a comparable gSD tool that helps diabetes patients to think about
features of their life with diabetes that they might like to change,
eg ‘I do not adjust my insulin or food enough in connection with
exercise’. The patient is asked to consider whether they would like
to change their behaviour in that context within one month, six
months, after that or not at all.
44
Patient name:
Completion date:
Interview date:
My diabetes has taken up
so much room up to now
My diabetes will take up so
much room in the future
(mark the area)
(mark the area)
Room for diabetes in your life
‘Room for diabetes in your life’ is one of 20 reflection sheets developed as a major part of a decision
been tested by nurses and people with
making method called Guided Self-Determination (GSD). GSD has b
one-to-one setting and in group training.
type 1 diabetes and persistent poor glycaemic control both in o
Both qualitative evaluation and a randomized controlled trial cconfirmed the impact of GSD on people’s
life skills and A1C.
Diabetes can take up room in good and bad ways
Lack of acceptance and lack of having integrated diabetes into life often go together and this may be
control.
the main reason why patients are living with poor glycaemic con
Why “Room for diabetes in your life”
Some patients are intensely concerned about their disease and tthis may constitute a considerable part
of their problem. Apparently professionals find this reaction too difficult to talk about and accordingly
do not comment on it. Likewise it seems difficult for them to approach the opposite problem of patients
tending to neglect their diabetes.
“Room for diabetes in your life” may help patients become able to distinguish between negative and
may for instance be taking up room in
positive ways that diabetes can take up room. A negative way ma
positive way may for instance be taking
the form of bad conscience and fear of late complications. A po
overall decision to let diabetes take up
up room in planning and acting. This awareness may cause an ove
room in a positive way. This provides a chance to make self-determined decisions about specific changes
required.
What is the difference?
The sheet may even help some patients express their first acceptance of diabetes.
How to use “Room for diabetes in your life”
Patients require time to fill it out at home before a conversation with a professional. They are supposed
life by shading the corresponding area of
to judge how much room diabetes currently takes up in their lif
how much room to give diabetes in future.
the oval shape and to do the same for their intentions about ho
They can, however, do it in many creative ways. Additionally patients are supposed to write what the difference will be.
Zoffmann 2004, Zoffmann in press.
Zoffmann 2004, Zoffmann in press
www.dawnstudy.com
Mark sentences describing your everyday life with an X in the left-hand column.
Indicate whether you would like to change behaviour in the right-hand columns (also with an X)
Patient name:
Completion date:
Your plans to change your way of living
within the
first month
I do not eat the meals I need according to my treatment
I do not adjust my insulin when what I drink and eat contains
more carbohydrates than normal
I eat too much when my blood glucose is low
I do not exercise enough
I some times do not take the amount of insulin I need
I do not adjust my intake of insulin or food enough in
connection with exercise
within the
first 6 months
after the
first 6 months
I have no
plans for
changing my
behaviour
‘Your plans to change your way of living’ is one of 20 reflection sheets developed as a major part of a
(GSD). GSD has been tested by nurses and
decision making method called Guided Self-Determination (GSD)
control both in one-to-one setting and in
people with type 1 diabetes and persistent poor glycaemic contr
controlled trial confirmed the impact of
group training. Both qualitative evaluation and a randomized co
GSD on people’s life skills and A1C.
To overcome the barriers to change
aspects, and each person with diabetes
The recommended way of living with diabetes comprises many aspe
recommendations. Changing way of living is
meets unique challenges in daily life to integrate those recomm
confirmed that internal motivation facilitates
hard, but research based on ‘self-determination theory’ has con
accomplishment and maintenance of change.
recommendations yet not integrated. ReadiThe need to change will depend on nature and numbers of recomme
ness to change depends on the person’s own judgment and choice and can be pictured by themselves
and others through their answer to questions about if and when they want to integrate recommendations yet not integrated.
I am overweight
Why using ‘Your plans to change your way of living’
Traditional conversations about the patients’ way of living are time consuming and their effectiveness
and appropriateness to accomplish changes can be questioned. ‘Your plans to change your way of living’
provides a quick overview of each person’s needs and readiness to change.
I smoke
I have problems with alcohol
Patients complete the sheet in their own time before a discussion
with a healthcare professional. While traditional conversations
can be time-consuming and difficult to focus because of the large
number of factors involved in self-management behaviour, the
sheet provides a much easier view of the patient’s difficulties and
readiness to change. It is important for the HCP to respect areas
where the patient is not ready to make changes, and to question
unrealistically ambitious plans to change a large number of aspects
at the same time.
Interview date:
I will like to change
Characteristics
of my
everyday life:
I discover low blood glucoses too late
I do not check my blood or urine as recommended
I am often under harmful stress
The questions signal respect for the patient’s personal choices and accordingly facilitate autonomous
motivation.
The sheet helps patient and professionals to prioritize – where to start.
How to use ‘Your plans to change your way of living’
Patients prepare themselves by filling out the sheet at home before a conversation with a professional.
It is important to respect choosing not to change an area and tto be sure that patients who say they will
reasons for changing. Unrealistic plans must
change, are internally motivated and have found their own reaso
be challenged for instance if many recommendations are intended to be integrated at a time.
I some times do not take prescribed medication
Total:
Zoffmann 2004, Zoffmann in press
Zoffmann 2004, Zoffmann in press.
www.dawnstudy.com
PLANS TO CHANgE YOuR WAY OF LIFE
• Defines behaviour choices
ROOM FOR DIABETES IN YOuR LIFE
• Enables visual representation of feelings that are
difficult to understand or convey in words
• Provides real basis for discussion and making
plans.
• gives patient permission to choose whether or
not to take action, and if so, on what timescale
• Enables structured discussion of selfmanagement options
• Enables selection of realistic targets.
54 DAWN TOOLS FOR HEALTHCARE PROFESSIONALS
DAWN TOOLS FOR HEALTHCARE PROFESSIONALS 55
QuALITY OF
LIFE FOR YOuTH
THE CHILDREN’S
CIRCLE TOOL
– Questions about living with diabetes
(DAWN goal 1)
How much does diabetes interfere with your life?
Young people often experience great difficulties in coping with
diabetes, which is intrusive, demanding and interferes with their
daily quality of life (QoL). Achieving a good quality of life helps with
maintaining good control, so it is vital that HCPs have the means to
assess QoL accurately.
(DAWN goal 1)
The child at the centre
quality of life
for youth
Questions about living with diabetes
The following questions are about how you see your life with diabetes. Circle the number that gives the best answer for you. Please provide an
answer for each question. Please bring the completed form with you to the next consultation where it will form the basis for a dialogue about
how you are coping with your diabetes.
Patient name:
Completion date:
Interview date:
Newer
Very
seldom
Some
times
Often
All the
time
0
1
2
3
4
Impact of symptoms relating to diabetes
Total score
0-12
How often do you…
1. Feel physically ill?
2. Have a bad night’s sleep?
0
1
2
3
4
3. Miss school because of your diabetes?
0
1
2
3
4
0
1
2
3
4
Impact of treatment
Questions about living with diabetes
0-12
How often…
4. Do you feel pain associated with the treatment?
5. Does diabetes interfere with your family life?
6. Do you feel restricted by your diet?
0
1
2
3
4
0
1
2
3
4
7. Limit your social relationships and friendships?
0
1
2
3
4
Impact on activities
Young people are asked to answer the questionnaire before their
routine consultation. The scores can be converted to percentages
and used to derive an overall QoL score which can be monitored
over time. Scores for individual sections will also highlight problems
in any particular aspect.
The ”quality of life for youth” questionnaire
The achievement of good metabolic control
is difficult in children, and particularly in
adolescents. Having diabetes requires a
complex, intrusive and highly demanding
daily programme for families, which may
have a negative effect on Quality of Life
(QOL). Good Quality of Life is associated
with better metabolic control.
0-20
How often does diabetes...
The Quality of life for youth questionnaire45,46 has 21 questions
about how diabetes affects daily life, plus one (separately-scored)
on the young person’s view of their health compared to others of
the same age. The main questions are framed as ‘How often …’ and
cover the impact of diabetes symptoms and treatment, its effect on
school and leisure activities, parents’ actions and specific diabetes
worries. Each is scored between 0 (never) and 4 (all the time).
quality of life
for youth
8. Prevent you from bicycling or using a machine (e.g. a computer)?
0
1
2
3
4
9. Interfere with you exercising?
0
1
2
3
4
10. Interrupt your leisure time activities?
0
11. Prevent you from doing activities at school?
1
2
3
4
0
1
2
3
4
12. Are too protective of you?
0
1
2
3
4
13. Worry too much about your diabetes?
0
1
2
3
4
14. Act like diabetes is their disease, not yours?
0
1
2
3
4
Parent issues
0-12
How often do you feel that your parents…
Worries about diabetes
0-28
How often do you worry about whether…
15. You will get married?
0
1
2
3
4
16. You will have children?
0
1
2
17. You will not get a job you like?
0
1
18. You will faint or pass out?
0
3
4
2
3
4
1
2
3
4
19. You will be able to complete your education?
0
1
2
3
4
20. Your body looks different because of diabetes?
0
1
2
3
4
21. You will get complications?
0
1
2
3
4
Health perception
0-4
22. Compared with others your age, would you say your health is?
Excellent 1 Good 2
DQOLY-SF © 2006: H. Hoey, H. M. McGee, T. C. Skinner and S. E. Skovlund
Thank you for your help!
Fair 3 Poor 4
Why use the “quality of
life for youth” questionnaire?
It is vital that clinicians are able to assess
QOL and identify issues which may affect it,
particularly as these issues may not be
obvious during the clinical consultation. The
“quality of life for youth” questionnaire is a
valid assessment that enables the
identification of specific issues which are
negatively affecting QOL. It provides an
opportunity for enhanced communication
between the patient, family and diabetes
care team, and also an opportunity to
resolve these negative issues.
How to use the “quality of
life for youth” questionnaire
The questionnaire can be used as part of
any routine diabetes consultation. The
young person can be asked to complete the
form at home or in the waiting room prior
to the consultation. The completed form
should be reviewed in the consultation by
the nurse, diabetologist or psychologist,
together with the child/adolescent. It can
be used to identify issues that may be
interfering with daily diabetes management
and quality of life and can help prompt a
dialogue about issues of particular concern
for the young person with diabetes. The
questionnaire can be used to obtain a
reliable quality of life score that can be
used to monitor changes over time and
individual response to changes in therapy.
To further enhance the focus on the young
person’s own agenda, an additional
question can be added at the end of the
form as follows: “Which topic would you
most like to discuss with your diabetes care
team today? (e.g. treatment related issues,
school, home, sport or other areas)”. This
question is not to be scored but can help
facilitate dialogue.
What is the “quality of
life for youth” questionnaire?
The “quality of life for youth” questionnaire
was developed from the revised 52 item
DCCT Diabetes QOL for Youth
Questionnaire (*1). This shorter form is a
more precise version with improved
construct validity and with items known
to be associated with metabolic control.
It has been validated for children and
adolescents aged 10-18 years and has been
translated into 16 languages to date (*2).
The questionnaire is quick and easy to score
and allows comparisons across countries
and cultures.
Scoring of the questionnaire
Each item has five possible scores with a
value from 0 to 4, with 0 representing
‘never’ and 4 ‘all the time’. Higher scores
indicate a more negative impact of diabetes
and poorer QOL, and lower scores indicate
greater QOL. The scoring of each subscale
is done separately by summation of scores
for each item within the subscale. Emphasis
on a score for each subscale, as opposed to
a total score, puts a greater emphasis on
each item and subscale and thus highlights
a problem in a single area.
For ongoing monitoring and comparison to
normative scores, standardised scores with
a range from 0-100 can be calculated as
follows:
Total QOL Impact score: 100 *
(raw total score - 21) / 84
• Impact of symptoms: 100 *
(raw score – 3) / 12
• Impact of treatment: 100 *
(raw score – 3) / 12
• Impact of activities: 100 *
(raw score – 7) / 28
• Parent issues: 100 *
(raw score – 3) / 12
• Worries about diabetes: 100 *
(raw score – 5) / 20
• The self-rated health perception question
is treated separately and standardised to
1-100 as follows: Score= 100 *
(raw score-1)/3
Questionnaire availability
The questionnaire is available in many
languages from the Hvidøre Study Group
on Childhood Diabetes (*2). Please contact
questionnaire administrator Mette Bauditz,
Corporate Responsibility, Novo Nordisk, to
obtain a user agreement form for research
purposes and further information. E-mail:
[email protected].
Further information about the Hvidøre
Study Group on Childhood Diabetes:
hvidoeregroup.org
The quality of life for youth questionnaire
was developed with the Hvidøre Study
Group on Childhood Diabetes. The
questionnaire is now being used to
implement evaluation of QOL in diabetes
treatment as part of DAWN Youth, a global
Novo Nordisk initiative in partnership with
the International Diabetes Federation (IDF)
and the International Society for Paediatric
and Adolescent Diabetes (ISPAD).
The DAWN Youth initiative seeks to improve
psychosocial support for young people with
diabetes and their families through
promotion of evidence-based tools and
strategies for paediatric psychosocial
diabetes management.
For more information, please access
dawnyouth.com
*1) Reference: Skinner, T. C., Hoey, H.,
McGee, H. M., Skovlund, S. E.: A short form
of the quality of life for youth
questionnaire: exploratory and confirmatory
analysis in a sample of 2,077 young people
with type 1 diabetes mellitus. Diabetologia,
Vol. 49, pp. 621-628, 2006.
*2) Copies of the questionnaire are
available in the following languages:
Danish, Dutch, English (North American and
UK), Finnish, French, German, Italian,
Japanese, Macedonian, Norwegian,
Portuguese, Spanish and Swedish.
A high score indicates a high negative
impact on QOL.
The children’s circle tool47 was designed to help stimulate discussion
between children with diabetes, their healthcare support team and
their families. A map showing overlapping circles with the child at
the centre shows the main non-medical areas affecting his/her life
– his/her family, diabetes support team, school, local community,
friends and leisure activities and cultural or local traditions. The
overlap between them shows interaction between these areas of
the child’s life and their influence on his/her own and his/her family’s
wellbeing.
Discussing how these circles are related can reveal barriers to
effective diabetes management and how the child and family could
be supported in resolving them. Each of the life areas and their
impact on the child can be discussed in turn or in any order, starting
with open questions eg ‘In what areas are things not going so
well?’, and ‘In what areas could improvement be made by the child,
family and healthcare team working together?’ After the discussion,
the map (and notes made on it) can be given to the child or parent
as a reminder.
children’s
circle tool
Diabetes is different for children
let’s talk
about you
The children’s circle tool
The children’s circle tool is designed to stimulate
dialogue between the diabetes support team,
children and young people with diabetes and
their families. It focuses on non-medical issues
which impact upon quality of life and diabetes
self-management. It is a simple tool which
can be used in a flexible way to support both
young people and their parents’ involvement in
defining wishes and needs for a better life with
diabetes. Some simple but powerful dialogue
techniques are shared below.
Using the children’s circle tool
The children’s circle tool focuses on the six
main areas which interact in the life of a child
or young person with diabetes: the child, their
family, their diabetes support team, their school,
their local community, their friends and leisure
activities and their cultural or local traditions.
The circles illustrate how these different aspects
of the child’s life affect each other and influence
the treatment and well-being of the child and
the family. These are important topics for
dialogue between the diabetes care team and
the family.
By illustrating how these circles are related,
you can spark meaningful dialogue with children
and their parents. This form of conversation
will reveal potential barriers to effective diabetes
management and will provide a platform for
you to discuss possible measures and available
support structures. The children’s circle tool is
designed to inspire your conversation, so you
can either follow the sequence outlined below,
or improvise to follow the course of your
conversations.
The children’s circle tool is best implemented
by using open-ended questions, e.g.:
•   What is the most important thing to talk 
is the most
about today?
•   How do these different areas interact with 
do these different
the child’s diabetes management?
•   In which areas are things going really well?
which areas are
•   And in which areas are things not going so 
in which areas
well?
•   In which areas do the diabetes care team, the 
which areas do
family and the child believe that improvement
can be made through a collaborative effort?
Asking open-ended questions can help to identify 
Asking open-ended questions
barriers to effective diabetes management and
lead to agreement on specific actions or support
activities that may be relevant.
Each page of the map can be torn out and
given to the child or parent at the end of the
consultation to provide a visual reminder of the
talk. It may be helpful for them to write down
notes and sketch action plans on the actual map
so they can take them home at the end of the
consultation and refer to them later.
for educating the school personnel and relevant
others about the child’s diabetes. This should not
mean the child misses out on the health and social
benefits of an active lifestyle, and they should be
encouraged to pursue sporting activities as far as
is safe and practical. Parents and school personnel
also play a key role in promoting diabetes
awareness amongst the child’s peer group so that
they can establish emotionally supportive and
understanding friendships.
The key spheres of responsibility are:
Child
The child or young person with diabetes is the
centre of attention in the consultation, and this
is reflected with the child being positioned in the
very center of the illustration. Understanding the
child’s wishes and needs in regard to each of the
circles provides a good platform for identifying
the best ways to improve the child’s quality of
life. It is valuable to consider how the child’s age
affects their ability to cope with the challenges
represented by the illustrations in the map.
Community
The local community can provide a wider, social
sphere of support for the child and their family,
and includes the child’s social networks and
involvement in community initiatives. Community
activities such as children and family camps, peer
support programmes for parents and families
and other special educational initiatives are often
available to families with children with diabetes.
Making use of local activities requires knowledge
about their existence and encouragement and
means to attend.
Family
The family is the child’s primary support team.
Understanding the parents’ perspective on their
child’s diabetes management, and how the family
works together to manage diabetes at home,
is key to developing a realistic, well-functioning
treatment plan. It is equally important to
understand the parents’ concerns and need for
emotional and educational support to take on the
role as coach and supervisor for the child.
Culture
The culture circle represents the wider community
the child’s family is part of. It includes religion
and ethnic traditions which may impact upon
things such as dietary habits, stigmas regarding
illness, attitudes to health care and other factors.
Important culture-specific barriers or opportunities
for improving diabetes management may be
identified by talking about these issues.
Diabetes Support Team
The diabetes support team is responsible for
providing the medical treatment and ongoing
self-management, educational, emotional and
psychological support. Children with diabetes
and their families depend on a diabetes support
team which listens to their anxieties and provides
age-appropriate information and emotional
support tailored to their specific needs.
School, Sport Activities and Friends
Every child with diabetes requires a safe and
supportive educational environment that
understands and cares for their needs. Parents,
health professionals, school personnel and local
authorities all have a role to play in ensuring that
children with diabetes are cared for and supported
24 hours a day. It should always be clear who
is responsible for helping and keeping the child
safe during school hours and who is responsible
4413_Blok.indd 2
The children’s circle tool was developed by
DAWN Youth, a global Novo Nordisk initiative
in partnership with the International Diabetes
Federation (IDF) and the International Society for
Pediatric and Adolescent Diabetes (ISPAD). It is
based on the ecological model Bronfenbrenner,
U. Harvard University Press 1979 and an
adaptation of this developed by Dr Barbara
Anderson, a member of the international DAWN
Youth Steering Committee.
The DAWN Youth initiative aims to improve the
quality of life and health of young people with
diabetes by focusing more on the psychosocial
aspect of managing the condition. The DAWN
Youth initiative drives advocacy, research,
concrete initiatives and better practices worldwide for better child-centered diabetes care.
For more information, please see
dawnyouth.com
07/07/08 13:49:16
THE CHILDREN’S CIRCLE TOOL
QuALITY OF LIFE FOR YOuTH
• Helps young people to explain how diabetes
affects their life
• Provides a framework for children with diabetes,
their families and healthcare team to look in turn at
what aspects of life present problems for the child
• Provides structured basis for discussion
• Enables non-medical problem areas to be explored
in the context of how the child, family and
healthcare team can work together to resolve them
• Identifies issues where action (by the young
person, HCP or others) would improve quality
of life.
• Breaks the whole idea of living with diabetes
into smaller aspects which are more
manageable for the child.
• Helps identify areas of concern
56 DAWN TOOLS FOR HEALTHCARE PROFESSIONALS
DAWN TOOLS FOR HEALTHCARE PROFESSIONALS 57
THE DAWN
ExPERIMENT
ASSESSMENT OF PATIENT SuPPORT
AND TEAM FuNCTIONINg
(DAWN goal 1)
Assessment of Primary Care Resources and Support for chronic disease self-management (PCRS)
(DAWN goal 2)
DAWN folder new
23/05/05
9:59
Side 1
Ask. Listen. Response
This tool48 was developed to help healthcare professionals to obtain
quickly the closest possible understanding of what troubles their
diabetes patients, given that most consultations only last less than
ten minutes. As a result, the discussion can arrive at a treatment
plan that truly addresses the patient’s priorities and also ensures
quality diabetes care.
HCPs are invited to carry out an experiment by asking one searching
question, eg ‘What is the most difficult part of living with diabetes?’
or ‘What are your greatest concerns about your diabetes?’ to at least
three patients; followed by a further prompt for more information.
The HCP should then listen to the patient for at least five minutes
without interrupting or advising, and only after that period, take the
discussion into possible ways to resolve the issue.
The team's view of its own performance
DAWN folder new
23/05/05
What was the most important thing that you learned about your patient?
9:59
Side 3
The DAWN Experiment
What was it like for you to listen for 5 minutes without interrupting?
An exercise in communications
What if you don’t know what you don’t know?
Often the barriers to diabetes self-management remain hidden because we
haven't asked the right questions. Healthcare providers recognise that there
is only limited time available for a meaningful dialogue between patient and
How will you incorporate what you have learned into your patient’s care?
provider, but as shown in the DAWN study they believe these issues are
important.
Do you have any comments about the DAWN experiment?
The challenge is to quickly learn the most important issues from the patient’s
perspective so that the treatment plan can be a truly collaborative effort.
The result of this collaboration is the creation of a mutually agreed plan that
addresses the patient’s priorities and ensures quality diabetes care.
With only 5 to 10 minutes per average consultation, asking individual
patients “What is the most difficult part of living with diabetes?” or “What
are your greatest concerns about your diabetes?” can often get right to the
heart of the matter in a few minutes.
To learn more about DAWN go to www.dawnstudy.com
We invite you to conduct an experiment by asking one of those questions to
Please mail us your comments to the DAWN experiment at [email protected]
at least three of your patients. Use the DAWN Experiment to help you along.
DAWN Programme.
The DAWN Programme is a global Novo Nordisk initiative in collaboration
with the International Diabetes Federation (IDF) and an expert advisory panel.
It began with the DAWN study in 2001, which involved more than 5000 people
with diabetes and more than 3800 healthcare professionals in 13 countries.
The key finding from the DAWN study was that to improve health outcomes,
we must address the people behind the disease.
Today, the DAWN Programme aims to translate the findings from the survey
into concrete actions that will improve the lives of people with diabetes.
For more information on the DAWN Programme visit: www.dawnstudy.com
The DAWN Experiment
1. Ask
Ask your patient “What is the most difficult part of having diabetes for you?”
Follow with: “Tell me more about that.” and “Why is that so?”
2. Listen
Listen to your patient’s story for at least 5 minutes without offering advice
or interrupting. The goal is to learn the most difficult part of living with
diabetes from the patient’s point of view.
If there is a pause, encourage the patient to tell you more.
• You can use an empathic response such as ”It sounds like you have had
a rough time of it”
• Or ask an exploratory question such as ”What’s that been like for you?”
3. Respond
Respond as you would naturally after the 5 minutes have passed.
The following questions have proved useful with some patients.
• “How would things have to change for you to feel better about this
situation?”
• “Have you tried to deal with this situation in the past? If so what
happened?”
• “Can you think of any steps that you could take that might bring you
closer to where you want to be?”
• “What could I do that would help you?”
• “What will you do when you leave here? When, where?”
The DAWN experiment is an adaptation of ideas presented in "The Art of Empowerment:
Stories and Strategies for Diabetes Educators" by Bob Anderson EdD and Marti Funnell MS,
RN, CDE published by the American Diabetes Association, 2000.
Following the consultation, the HCP is asked to consider what was
the most important information leant about the patient, his own
feelings about listening without interrupting, and how his findings
will be built into the patient’s care.
PCRS49 was developed by the Robert Wood Johnson Foundation50
for multidisciplinary medical teams to assess how well their systems
support self-management by people with diabetes and other chronic
conditions. Each team member is asked to assess eight aspects
of patient support offered by the team (eg involving patients in
treatment decisions) and eight aspects of organisational support (eg
integration of self-management into primary care).
Each aspect is scored in terms of what was done in the preceding
three months, and rated between 1–10. Within that scale are four
bands of performance: D (=1) means ‘not done’; C (2–4) means
passive patient-provider interaction, or ‘done inconsistently’. B (5–7)
indicates organised and consistent implementation, using a team
approach; and A (8–10) means all the conditions of B, plus strongly
integrated systems.
Individual scores are assembled and discussed with all the
team members. Discrepancies reveal areas for where better
communication or team function is needed, and low scores show
widely-perceived areas for improvement. The team will agree a
strategy for progress and a timetable for reassessment. use of PCRS
has been shown to improve service provision over time.
one person at a time
Assessment of Primary Care Resources and Supports
for Chronic Disease Self-Management (PCRS)
Background:
• The PCRS is a tool to help clinics assess the level to which self-management is integrated into their
practice, and to help clinics focus on actions that can be taken to support self-management.
• Itisforusebymultidisciplinaryteams(clinicalandsupportstaffwhoworktogether).
• Eachmemberoftheteamindependentlycompletestheassessment.
• Theteamthenmeetstodiscusstheirscores.Discrepanciesinscoresofferanimportantopportunity
fordiscussionthatcanleadtoimprovedcommunicationandteamfunction.Discrepanciesorlow
scores also suggest areas for improvement.
• ThePCRShastwosectionsinvolvingatotalof16characteristicsforassessment:
– Patient Support: Eight characteristics of service delivery found to enhance patient self-management
(i.e., be better able to manage their condition, their emotional health and their daily activities
and roles).
– Organisational Support: Eight system design issues that primary care organisations must address
in their planning, resource allocation, and evaluation to support the delivery of self-management
services.
Instructions:
• Usingthe1–10scaleineachrow,giveone numeric rating for each of the 16 characteristics.
• Whenconsideringyourresponsestoeachcharacteristic,usetheprevious 3 months as the
timeframe.
• Eachcharacteristichasfourlevelsofperformance:
– Disthelowestlevel;itisanindicationofinadequatenon-existentactivity.
– Cpertainstothepatient-providerlevel.Atthislevel,implementationissporadicorinconsistent;
patient-provider interaction is passive.
– Bpertainstotheteamlevel.Atthislevel,implementationisdoneinanorganisedandconsistent
manner,usingateamapproach;servicesarecoordinated.
– Aisthehighestlevel;itassumestheBlevelplus strong systems integration.
• WiththeexceptionoflevelD,ineachlevelyoucanselectfrom3numbers.Thisallowsyouto
consider to what degreeyourteamismeetingthecriteriadescribedforthatlevel.Forexample,
how much of the criteria your team meets and/or how consistently your team does so.
I. Patient support
Characteristic
D
1. Individualised
Assessment of
Assessmentof
Patient’s
Patient’s
Self-Management
Educational
Needs
Needs
is not
done
2. Patient
Self-Management
Education
does not
occur
3. Goal Setting/
Action Planning
ActionPlanning
is not
done
4. ProblemSolving Skills
are not
taught or
practised
with
patients
5. Emotional
Health
(e.g., depression,
anxiety, stress,
anxiety,stress,
family conflicts)
is not
assessed
6. Patient
Involvement
does not
occur
7. Patient Social
Support
is not
addressed
Linking To
8.LinkingTo
Community
Resources
Resources
does not
occur
1
1
1
1
1
C
is not standardised and/or
does not consistently include
most self-management
components
2
3
4
occurs sporadically or without
tailoring to patient skills,
culture, educational needs,
learning styles or resources
2
3
4
occurs but goals are
established primarily by
healthcare team rather than
collaboratively with patients
2
3
4
are taught & practised
sporadically or used by only a
few team members
2
3
4
B
A (= all of B plus these)
is standardised, fairly
comprehensive & documented
beforesettinggoals;
considers language, literacy &
culture;assessesknowledge,
behaviours, confidence,
barriers, resources & learning
preferences
is an integral part of planned
care;resultsaredocumented,
systematically reassessed
& used for planning with
patient
5
6
7
plan is developed with patient
(& family if appropriate)
based on individualised
assessment;isdocumentedin
patientnotes;andallteam
members reinforce same key
messages
5
6
7
is done collaboratively
with all patients/families &
member(s) of their healthcare
team;goalsarespecific,
documented & available to
any team member, goals
are reviewed & modified
periodically
5
6
7
3
4
5
6
7
5
6
7
ispassive;clinicianoreducator is central to decisions about
directs care with occasional
self-management goals
patient input
& treatment options &
encouraged by healthcare
team & office staff
Developed by the Robert Wood Johnson Foundation Diabetes Initiative, March 2006 – www.diabetesinitiative.org
Copyright © 2006 Washington University in St. Louis School of Medicine.
1
1
1
2
3
4
5
6
7
is discussed in general terms,
is encouraged through
not based on an assessment of collaborativeexplorationof
patient needs or resources
available resources
(e.g., significant others,
education/support groups) to
meet individual needs
2
3
4
is limited to a list or pamphlet
of contact information for
relevant resources
2
3
4
9
10
8
9
10
is an integral part of care,
goals are systematically
reassessed & discussed
withpatient;progressis
documented in patient notes
8
9
10
are routinely taught &
isanintegralpartofcare;
practised using evidence-based takes into account family,
approaches & reinforced by
community & environmental
factors;resultsaredocumented
healthcare team members
& routinely used for planning
with patient
isnotroutinelyassessed;
assessment is integrated
screening & treatment
into practice & pathways
protocols are not standardised established for treatment &
orarenonexistent
referral;patientsareactively
involved in goal setting
&choices;teammembers
reinforce consistent goals
2
8
is documented in patient
notes, is an integral part of
patient care plan, involves
family & community resources
& is systematically evaluated
for effectiveness
5
6
7
8
9
10
systems are in place to assess,
intervene & monitor patient
progress & coordinate among
providers;standardised
screening & treatment
protocols are used
8
9
10
is an integral part of the
systemofcare;isexplicitto
patients;isaccomplished
through collaboration among
patient&teammembers;
considers environmental,
family or community barriers
& resources
8
9
10
system in place to assess
needs, link patients with
services & follow up on
social support plans using
household, community, or
other resources
8
9
10
occurs through a referral
system in place for
system;teamdiscussespatient coordinated referrals, referral
needs, barriers & resources
follow-up & communication
before making referral
among practices, resource
organisations & patients
5
6
7
8
9
10
PRIMARY CARE RESOuRCES
AND SuPPORT
THE DAWN ExPERIMENT
• Provides a framework for detailed assessment of
both patient support and team functioning
• gives the opportunity for patients to pinpoint
their major concerns
• Covers both direct support for patient selfmanagement, and backup team organisation and
communication
• Helps HCPs to get to the heart of barriers to
self-management
• Enables construction of a treatment plan that
meets the needs of both patient and HCP.
• As it covers both clinical and support staff within
the team, discrepancies between scores from
different team members will reveal their different
perceptions and suggest areas for improvement.
58 DAWN TOOLS FOR HEALTHCARE PROFESSIONALS
DAWN TOOLS FOR HEALTHCARE PROFESSIONALS 59
A gOOD LIFE
WITH DIABETES
INSuLIN DIALOguE
TOOLKIT
Learning ways to cope with diabetes
Dealing with anxieties about insulin
This online interactive programme51 was designed to help people
with diabetes to cope with mood problems, negative emotions and
everyday stresses that affect behaviour. The programme has eight
modules introducing ideas and suggestions on ways to think more
positively and to develop ways of coping. The modules explore
how to relax and control negative thoughts, to focus on enjoyable
activities now and in the future, and to deal with worries. Learning
skills to become more assertive and communicate more effectively
with others is also helpful in avoiding gloominess and accepting
daily events without descending into depression.
The DAWN study showed that most people with type 2 diabetes
have anxieties and preconceptions about starting insulin, and
these can be allayed by informed discussion with a healthcare
professional. The insulin dialogue toolkit52 is designed to enable
patients to identify and address their concerns, through an open
and participatory discussion with the HCP.
– A self-help coping tool
(DAWN goal 3)
(DAWN goal 4)
An introduction for HCPs explains the working of the three-part
toolkit. The insulin perceptions questionnaire invites the patient to
identify his level of agreement or disagreement with statements
about different aspects of starting insulin – its benefits, his own
health including any self-blame, daily life, social issues, injection
issues and possible side-effects. These different aspects are each
colour-coded on the questionnaire and the other parts of the
toolkit, to give the HCP rapid access to the relevant sections.
One week is allowed for each module, so there is plenty of time to
think about the suggestions and put them into practice. Alongside
the reading and video stories illustrating the ideas, homework
exercises are required, which always include keeping a diary of
mood throughout the whole programme.
insulin
dialogue
a DAWN dialogue tool
DAWN
insulin perceptions questionnaire
Diabetes Attitudes Wishes & Needs
Patient name and date:
Please tick the appropriate box to indicate how
you feel about each of the statements below
an introduction
for healthcareA1
professionalsA2
A3
A4
Strongly
disagree
1
Disagree
Neither
agree nor
disagree
Agree
Strongly
agree
2
3
4
5
Taking insulin can help me to better control my blood sugar.
Taking insulin will help to improve my energy levels.
Taking insulin can prevent future health problems.
Taking insulin can make me feel better.
What else do you think will be good about taking insulin?
B1
Taking insulin would mean I have failed to manage
my diabetes with lifestyle changes and tablets.
B2
Taking insulin would mean my diabetes has become much worse.
B3
Taking insulin would mean my health could get worse.
C1
Taking insulin would make life less flexible.
C2
Taking insulin would mean I have to give up activities I enjoy.
C3
Taking insulin would make it more difficult to
do my job and the things I have to do at home.
C4
Taking insulin would make me more dependent on my doctor.
D1
Being on insulin would cause family and
friends to be more worried about me.
D2
Taking insulin would mean other people
might see me as a sicker person.
D3
Injecting insulin would be embarrassing.
E1
I’m afraid of injecting myself with a needle.
E2
Injecting insulin would be painful.
E3
Managing insulin injections would take a lot of time and energy.
DAWN
E4
Diabetes Attitudes Wishes & Needs
F1
F2
It would be difficult to correctly inject the right
amount of insulin at the right time every day.
Taking insulin would increase the risk of low blood sugar.
Insulin can cause weight gain.
Does anything else worry you about taking insulin?
Reference: Snoek, FJ, Skovlund, SE, Pouwer, F. Development and validation of the insulin treatment appraisal scale (ITAS)
in patients with type 2 diabetes Health and Quality of Life Outcomes 2007, 5:69 doi:10.1186/1477-7525-5-69.
The HCP can then use suggested questions, eg ‘How do you believe
taking insulin would restrict your day-to-day life?’ to explore further
the patient’s reservations.
The third resource is an illustrated insulin guide providing facts to
address and counter the patient’s concerns.
A gOOD LIFE WITH DIABETES
INSuLIN DIALOguE TOOLKIT
• Provides a solid, long-term resource for
improving the patient skills needed for coping
with diabetes
• Addresses type 2 patients’ concerns about the
implications of starting insulin
• Learning to maintain a more positive quality of
life contributes to better self-management and
better glycaemic control
• This will result in better clinical outcomes over
time; achieved with low-cost intervention.
• Resources help the HCP minimise fears about
insulin initiation
• Enables the patient to decide about starting
insulin, with respective options to delay the
decision, or not to start, or to change their
mind at any time.
60 DAWN TOOLS FOR HEALTHCARE PROFESSIONALS
DAWN TOOLS FOR HEALTHCARE PROFESSIONALS 61
DAWN MIND
PROgRAMME
DAWN MIND YOuTH
PROgRAMME
Identifying what really worries patients
Helping young people to cope
DAWN MIND provides the framework for HCPs to assess the
psychological needs of their patients and, through networking
with other providers, to find effective solutions. It offers an online
questionnaire for patients to complete, preferably at least once a
year, about their quality of life and issues they would like to discuss
with their HCP. It also includes the assessment tools on well-being
(WHO-5)41 and diabetes-related distress (PAID)42 (pages 50–51).
The DAWN MIND Youth programme promotes assessment of
health-related quality of life (HRQoL) as part of routine outpatient
care for young people with diabetes. It uses a questionnaire for
10–18-year-olds with type 1 diabetes; known as MY-Q25. The
questionnaire is completed online, either at home or at the clinic,
before the routine annual assessment, in a password-protected,
secure environment called the MY-Q portal. Prior consent is required
from both the young person and their parent or carer.
(DAWN goal 5)
(DAWN goal 5)
The patient and HCP are given a printout of the completed
questionnaire, which they are then encouraged to discuss for
at least 15 minutes. The HCPs are also given training on how to
use the assessment as part of the DAWN MIND programme, and
they are able to compare the psychosocial needs identified with
other HCPs53. Practice nurses, who are often involved in use of the
questionnaire in clinic, report that the assessment of self-assessment
barriers helps build evidence of patients’ overall wellbeing and a
closer working relationship with them.
Questions in MY-Q cover general quality of life, social life at school,
with friends, family and in free time; mood and feelings about
their own body. They are asked how they feel about coping with
diabetes, including worries and the hardest aspect of treatment. Any
good or negative events in the recent past are taken into account,
and the young person is invited to raise any other issues they would
like to discuss.
DAWN MIND PROgRAMME
• Framework for routine assessment of
psychological needs of patients in primary care
• Questionnaire completed in only 5–7 minutes
• Includes HCP training on assessment of results
• Report generated by software for feedback
and discussion with patients
• Includes guidance for discussion and motivation
The answers are compiled by computer software and provided to
the paediatrician or diabetes nurse to follow up immediately in
discussion with the young person; especially in areas where they
are having particular problems. The results are filed so changes over
time can be detected, and referral to a psychologist can be made
if needed. guidance for the healthcare professional in effective
discussion and motivation (for both children and parents) is included
in the programme.
The DAWN MIND Youth programme recommends that the quality
of life of parents or carers of young people with diabetes should
also be assessed at the same time, if they are willing to participate.
The WHO-5 and PAID questionnaires (pages 50–51) are used, and
any problems can be discussed and appropriate support offered.
DAWN™
MIND™ Youth
Programme
A clinic’s guide
How to measure and discuss quality of life
as part of the annual check-up for young
people aged 10–18 years with type 1 diabetes
Appendix
1.
2.
3.
4.
5.
6.
MY-Q questionnaire
WHO-5 wellbeing index
PAID questionnaire
Sample letters
Informed consent form
Technical information
DAWN MIND YOuTH PROgRAMME
• Framework for routine assessment of
psychological needs of children and young
people aged 10–18, in primary care
• MY-Q questionnaire completed in about
10 minutes, in secure online portal
• Includes software to analyse results for discussion
• Includes guidance for discussion and motivation
• Includes assessment of wellbeing of parents
and carers.
62 DAWN TOOLS FOR HEALTHCARE PROFESSIONALS
DAWN TOOLS FOR HEALTHCARE PROFESSIONALS 63
DAWN YOuTH TRAIN
THE TRAINER SCHEME
DAWN FACILITATORS’
TOOLKIT
Refining skills for working with young people
Developing group training techniques
Also known as the DAWN Youth Train the Trainer scheme, this is
a one-day training programme for healthcare professionals who
diagnose, treat and care for young people with type 1 diabetes,
with a follow-up one-day course taken six to 12 months later. It is
a constructive resource for professionals of all disciplines, including
paediatricians, psychologists, diabetes educators, diabetes nurses,
dieticians and social workers. Its aim is to give a deep understanding
of the psychosocial challenges faced by young people with diabetes
and their families, while also offering the skills and tools that will
enable them to provide the best possible psychosocial care. It is
intended that the understanding and skills gained are then passed
on by participants to their colleagues.
The DAWN Facilitators’ toolkit* is a structured resource for
HealthCare Professionals working with diabetes, to be used as
the basis of workshops to explain the need for psychosocial
support for patients, and to practise key approaches. It comprises
three complete workshops, with a CD-ROM providing manuals,
presentations, learning modules and videos.
(DAWN goal 5)
After a preparatory session examining the experiences of a young
person with type 1 diabetes, four core modules address aspects of
recognising and addressing the psychosocial issues. The course uses
short presentations, group discussion, case studies and breakout
group exercises to examine the issue of matching scientific data
with real-life experiences and self-management; education and
counselling at the outset of diabetes treatment; communicating
effectively with children and addressing their parents’ fears; and
working with adolescents with diabetes.
(DAWN goal 5)
Introduction
Facilitator’s kit
Technical information & system requirements
Resource CD: Open CD and locate the folder you need for your workshop
DAWN Interactive 2: CD will start up automatically when you insert the
CD to your drive. If not please double-click the Novo icon in Windows
Explorer.
Facilitators kit DVD: Insert to your DVD drive and choose a video on the
DVD menu, or insert to a DVD player connected to a monitor/TV and
choose a video on the DVD menu. DVD will return to Main menu after
video ends.
The first two workshops both present the implications of the DAWN
study and the DAWN Call to Action. The shorter (Basic) workshop
gives participants the opportunity to try out the DAWN Experiment.
In the Advanced workshop, participants interact with a video
demonstration on how simple facilitation methods can improve the
outcome of medical discussions; given the known medical history of
the patient presented.
DAWN YOuTH TRAIN
THE TRAINER SCHEME
The Train the Trainer workshop is for HCPs who have completed the
Advanced workshop and are confident to facilitate group training
on the DAWN concept. It enables participants to act as trainer for
groups of 6–8 people, applying facilitation methods in effective
communication towards providing psychosocial support. The full-day
session uses both the DAWN Experiment and facilitation practice
based on video consultations.
• One-day interactive course of interest to all
types of healthcare professionals working with
children and young people with type 1 diabetes
Pentium 3, 350 MHz or better (capable of running Windows 98, NT, 2000,
& XP) 128 MB RAM, 16 bit colors 800x600 (or better - recommended), 4 x
CD drive
Apple Macintosh PowerPC or better, MAC Classic & MAC OS X.
A workshop concept for healthcare professionals
A workshop concept for healthcare professionals
Booklet.indd 1
19/05/05 12:00:22
Booklet.indd 16
19/05/05 12:00:25
DAWN FACILITATORS’ TOOLKIT
• Provides training in the use of facilitation
methods to improve communication between
healthcare professionals and diabetes patients,
and handling of psychosocial issues
• generates understanding of the personal
feelings and difficulties faced by children and
young people in dealing with their condition
and treatment
• Develops communication skills and provides access
to assessment tools for better interpretation of
psychosocial aspects of patient care.
System requirements: Resource CD & DAWN Interactive 2
* The DAWN Facilitators’ toolkit, on a DVD developed by the DAWN programme in
2005, is available from local Novo Nordisk affiliates.
• Three levels of workshop offer basic
information, insight into simple techniques or
detailed understanding and practice enabling
participants to pass on facilitating skills to
colleagues.
64  THE FUTURE OF DAWN
THE FUTURE OF DAWN  65
10
The future
of DAWN
DAWN 2, 2011–12
The original DAWN study revealed a major gap between the
psychosocial and educational support needs of people with
diabetes, and the care and support available in both developed and
less developed countries. Despite many positive developments in the
field of self-management education and psychosocial care, there are
still far too many people with diabetes who are not getting the care
and support they need, which could enable them to live healthier,
better and more productive lives.
In contrast to the original DAWN study, the DAWN 2 study will
be undertaken in an environment which is more positive towards
patient-centred healthcare than was the case in 2001. The
International Alliance of Patient Organizations (IAPO) developed the
declaration on patient-centred healthcare in 200654, which is now
more relevant than ever; calling for the involvement of patients at
all levels in society for the advancement of better care.
The psychosocial aspects of managing diabetes are today incorporated
into both ISPAD’s and the IDF global guidelines for diabetes27.
Increasingly national healthcare guidelines are recommending patientcentred care and education strategies to be further implemented; and
increasingly research grants are being channelled to health services and
psychosocial translational research.
DAWN is paving the way for a new paradigm in diabetes
Despite the positive developments, there are still huge challenges
ahead to ensure that people with diabetes will benefit from the
developments of the past decade.
For this reason, the DAWN 2 study will be undertaken as an even
wider and larger undertaking than the first DAWN study. The DAWN
2 study will involve people with diabetes, family members, healthcare
professionals, patient organisations, payers and policymakers in at
least 18 different countries. More than 16,000 people’s views will be
obtained to gather a new, updated understanding of how far we have
come in meeting the needs of people with diabetes, and what needs
to be done through multinational, concerted action.
The results of the DAWN 2 study will be shared through its many
partnering organisations and advisers over the next few years. It is
hoped that the new evidence will support very concrete educational
and support programmes, making a measurable difference to the
lives of millions of people with diabetes around the world.
By being the first study of its kind to include, so extensively, family
members and stakeholders other than health professionals into the
study, the DAWN 2 study aims to contribute radical new insights for
new, sustainable ways to enable people with diabetes to live full,
healthy lives and be actively involved in managing their own health.
DAWN 2 objectives
• Advance understanding and awareness of
the unmet needs of people with diabetes
and their caregivers, that have evolved over
the past decade, with the aim of identifying
opportunities for improved self-management.
• Facilitate dialogue and collaboration among all
key stakeholders around patient involvement
and improvement of self-management.
• Establish a benchmarking system for
psychosocial aspects of diabetes care and
catalyse improvements across stakeholder
groups.
• Use DAWN 2 as a lever for developing and
implementing psychosocial monitoring tools
and follow-up as part of regular diabetes care.
66  THE FUTURE OF DAWN
THE FUTURE OF DAWN  67
A 360˚
perspective
DAWN 2 aims to gain a 360° perspective on the experiences and
views of all of the different stakeholders with a role in supporting
people with diabetes. The aim for the international DAWN 2
initiative is that its study results will inspire and contribute to shaping
Quotes from the DAWN 2
Advisory Board
local and global health policy actions that reflect the major unmet
needs of those affected by the condition. They should make a
valuable contribution towards achieving truly patient-centred care
for people with diabetes worldwide.
The problem is bigger than diabetes:
all chronic diseases need a new model
of organisation of care.
Professor Marco A Comaschi, University Hospital San Martino, Italy
We have a vision to make a map like the
IDF Diabetes Atlas – not about prevalence
and mortality, but a map of the psychosocial
wellbeing of diabetic patients.
Professor Norbert Hermanns, University of Bamberg, Germany
We are talking about the rights and
responsibilities of people with diabetes
– are you hiding your diabetes, or are
you coming out?
Dr Wim Wientgens, Vice President IDF
Organisations in various countries have heard
the DAWN message and it has changed the
way people do research and think about the
problems; focusing more on the psychological
and humanistic aspects.
Professor Mark Peyrot, Loyola University, Maryland
I think we need to identify patients who
were doing poorly and are now doing well,
and zone in on what happened (to make the
change) – what clicked. This is a brand new
way of making use of a huge group of experts
we have not looked at before.
Professor William Polonsky, Behavioural Diabetes Institute, University of
California
DAWN will be judged by what it can
do to make things better for the person
with diabetes. That’s what it’s all about.
Professor Mark Peyrot, Loyola University, Maryland
Why DAWN 2?
To gain a global 360° perspective
on Diabetes Attitudes, Wishes and
Needs nationally and internationally.
68 REFERENCES
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