An MDT approach to managing care of
children with chronic constipation and
faecal incontinence
Shea T., Athanasakos E., Dalton S., McDowell S.,Blakeley K.,
Meadows N., Rawat D., Cleeve S
The Royal London Hospital
Department of Paediatric Surgery
Tweet us @CAPSbartshealth
Who are we?
I am scared I will have
another accident. . .
Why can’t I be like other
kids? I want to have a
normal poo
Problem
Defining the Problem
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Volume of patients
Hugely complex aetiology
– social, psychological, developmental, physiological
Paucity of information/investigation
Poorly understood physiology/pathology
need for consistent high quality team work
chronic condition
Impact on quality of life, not length
Invisible problem
Glamour shortfall
Di Lorenzo & Benninga. Gastroenterology 2004
FAECAL INCONTINENCE
incontinence is a result
of constipation
in >80%
GI Physiology Unit - Adults
• 1994
• >1,000 patients per year
• Internationally renowned
• Dr Mark Scott (Lower GI);
• Professor Daniel Sifrim (Upper GI)
• Professor Charles Knowles
Safe and clinically effective
Lack of structured MDT and multiprofessionals team.
Difficulty in managing this chronic and
debilitating condition.
BEFORE CAPS
Lack of co-ordination between many
specialists involved
Disjointed referrals between
gastroenterology and surgical teams
(0 not satisfied to 10
extremely satisfied)
Lack of information to inform patients and
their family
Limited diagnostic understanding of
symptoms to guidance management.
Cases done under GA; limited scientific
evidence of aetiology
New Service - CAPS
• Health Foundation funded us
£74,921.40 for 1 year (August
2016-August 2017)
• Further funding from PORT
(http://www.port-charity.org.uk/)
of £20,580 and Childwick Trust
(http://www.childwicktrust.org/)
for £10,000.
New Service - CAPS
• August 2016
• First Awake High Resolution Anorectal Manometry (AHRAM)
service in the UK to our knowledge.
Managing the service
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Conduct specialised diagnostic investigations
Co-ordinate and participate in weekly MDTs
Direct and manage the service
Liaise with multi-professionals
Up to date with training
Grants/funding applications
Advance research, conferences
New Service - CAPS
Integrated MDT (STAR)
Forum for specialist to discuss the patient outcomes
MDT meeting
Before MDT:
• Email all members of the team patients for discussion
• Bring copies of any physiology or associated notes (xray results)
During MDT:
• One member co-ordinating the MDT
• One member scribing the material discussed – recording on our CRS system
for future encounters
• Finalise plan of management
• Delegate who needs to make contact with patient and/or clinicians etc
After MDT:
• One member emails team of outcomes and feedback
• Update database with outcomes
AHRAM in Children
Under GA HRAM AWAKE HRAM
Resting Pressure (RP)
√
√
Squeeze Pressure (SP)
√
Enhanced Squeeze (ES)
√
Cough Reflex (CR)
√
Push
√
RAIR
Rectal Sensation (RS)
√
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√
AHRAM in Children
• We assessed children’s perception of discomfort when
undergoing AHRAM compared to routine VP.
• Patients scored their discomfort perception of AHRAM
compared to routine VP
AHRAM in Children
Scale 0 to 10 (10 most painful)
Patients report less discomfort with AHRAM compared to routine VP
Median discomfort threshold for AHRAM was 3 (range: 0-6) compared to routine VP with a
median of 8 (range: 3-10)
AHRAM in Children
Decrease LOS in hospital
Number
LOS median 37 days (range 11-83)
and admissions: median 17 (range
6-14 per month).
LOS median 12 days (range 8-48) and
admissions: median 6 (range 3-12 per
month.
Introduction of CAPS/STAR
HPS role in CAPS
• Provide expertise on child development, coping and anxiety
strategies
• Support with challenging behaviour/behavioural management
interventions
• Recommendations for awake anorectal physiology
• Provide preparation, distraction, procedural support,
therapeutic play, desensitisation, on-going support and family
support
• Support patients with treatment outcomes
Referrals
Play Support
Referral Reason
Trauma in the population
• Children with chronic physical health conditions often have
repeated hospital treatments and invasive investigations.
• In our patient group they have had blood tests, NG tubes,
lumbar puncture, MRI, urethral catheterisation, multiple
rectal medications
• Often been held down/restrained
• Stigma associated
• Large proportion of patients with additional needs
Psychological Support
p value
Chronic
Constipation
- low emotional function
- behavioural difficulties
- peer functioning
p<0.05
p<0.05
p<0.05
Faecal
Incontinence
- poor social/emotional
functioning
- behavioural difficulties
p<0.05
p<0.05
Psychological Support
? Psychological comorbidities
? Behavioural problems
? Emotional distress
Family therapy
Biofeedback
therapy
Psychological
therapy
Psychotropic
medication
health play specialist interventions
Key Messages
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Need exists
MDT – STAR team is needed
AHRAM is feasible in children
Economic and patient outcome benefits
Information to inform patients and improve decision
making.
• Improved co-ordination between specialities
• Offering science behind previously assessed diagnosis as a
result of a diagnosis of exclusion.
Challenges we faced?
• Underestimated the amount of patients and time required
for each patient for psychological/health play specialist
support
• Lack of normal values in Paediatrics for AHRAM
• Identifying phenotypes
• Future funding
Where are we now?
97%
success
rate
97 patients referred
to CAPS
58 AHRAM
21 waiting
15 under GA
Didn’t attempt HRAM
1.Parent refused HPS input and postpone test
2.Test not required after MDT discussion – straight to surgery
Attempted but failed HRAM = 1 patient
Directed to HPS/Psych support
How essential do you believe it is to maintain CAPS within the NHS for the
future? (0 not essential to 10 extremely essential)
(0 not essential to 10
extremely essential)
How useful are the weekly CAPS MDT meetings to you?
(0 not useful to 10 extremely
useful)
How useful CAPS has been when managing children with chronic constipation
and FI?
(0 not useful to 10 extremely
useful)
Correctly identifying the
underlying causes
Happy professionals
Happy parents
Happy patients
When do you need CAPS?
• ‘not winning with the patient’
• When conservative treatments (such as laxatives,
suppositories, toileting behaviour and diet) fail
• Time frame? 1 year? 2 years?. . . Too long?
• Symptoms become worse
• Significant faecal incontinence
Our next study day
Provisional date: April 2018
The Royal London Hospital
[email protected]