This document discusses the importance of transitioning care for children and young people with diabetes from pediatric to adult healthcare services. It provides an overview of key challenges such as deteriorating health outcomes when transition is not well-supported. The document summarizes research on effective transition models, which emphasize a person-centered and structured process starting early, with shared pediatric and adult healthcare team involvement. It also outlines recommendations for improving transition, such as establishing transition policies and coordinators, training healthcare professionals, and developing standards and outcomes monitoring. The goal is to empower young people by providing continuous, developmentally-appropriate support as they gain independence over their diabetes care.

1. Children and Young People with Diabetes
A National Approach to Improving Care
and Outcomes
Dr Fiona M Campbell
Consultant Paediatric Diabetologist
Leeds Teaching Hospitals Trust
&
NHS Diabetes Clinical Lead for Paediatric
Diabetes Network Development
NHSE Transition Scoping Event July 2013

2. The Human Costs Of Diabetes
Stroke
Diabetic
retinopathy
Leading cause
of blindness
in working-age
adults
2- to 4-fold increase
in
cardiovascular
mortality and stroke
Cardiovascular
disease
8/10 diabetic patients
die from CV events
Diabetic
nephropathy
Leading cause of
end-stage renal disease
Diabetic
neuropathy
Leading cause of
non-traumatic lower
extremity amputations
Life Expectancy is reduced by 23 years in patients with Type 1 diabetes when diagnosed under the age of 10 years

3. National Diabetes Audit
Mortality Report
http://www.ic.nhs.uk/webfiles/Services/NCASP/audits%20and
%20reports/NHS_Diabetes_Audit_Mortality_Report_2011_V2.0.pdf

4. National Diabetes Audit
2009/2010 HbA1c

5. DCCT RESULTS
15
13
11
Retinopathy
9
Nephropathy
7
“
it
l i
) y e kl er o ms e m ” X (
Relative Risk of Complications
HbA1c and Relative Risk of Diabetic Complications
Neuropathy
5
3
1
6

6.5*
7
8
9
10
11
HbA1c
Adapted from DCCT Research Group: N England Journal of Medicine. 1993;329:977-986
*Endocrine Practice 2002, 8 (supp 1), pg. 7. AACE recommends less than or equal to 6.5 HbA1c.
12

6. Successful and Complication Free Life

10. National Service Framework
Standard 6
“All young people with diabetes will
experience a smooth transition of
care from paediatric diabetes
services to adult diabetes services,
whether hospital or communitybased, either directly or via a
young people’s clinic.
The transition will be organised in
partnership with each individual
and at an age-appropriate time.”
(pg. 7 DH 2001)

11. Transition: Closing the Gap between Child
& Adult Services

12. What is transition?
Definition for diabetes transition:
“The period of time during which
there is planned, purposeful and
planned
supported change in a young
adult’s diabetes management from
child orientated to adult orientated
services, mirroring increasing
independence and responsibility in
other aspects of their life.”
David, 2001

13. Why is transition important?
How do we get
back to
Childrens
services?
That’s NOT what the
Paediatric team said!!
Semi-intelligent comment
about patients care
If only I knew
what the
Paediatric
team said!
Who is this person?
Do they know
anything?
Doubt I ’ll be back….

14. Is transition really important?
Cynics View
• Adolescence is physiological why medicalise it?
• Patients get through it in any case.
• It is a lot of time and resources for a small group of
patients.

15. Current perceptions?
Paediatric Services
Adult Services
…….. except no free
cookie!

16. Why is transition important?
Enthusiasts counter arguements
• Adolescence is physiological why medicalise it?
• High risk period and transfer of care
• Patients get through it in any case.
• Improved outcomes if supported
• It is a lot of time and resources for a small group of
patients.
• Health behaviour established in adolescence
is maintained in adulthood

17. What we already know……
• “young people with physical health problems have
more health difficulties the less contact they have
with healthcare services ……
……dropping out and failing to attend clinic
appointments and lack of concordance with
treatment regimens have been extensively
documented as a consequence of failing to provide
adequate transition support.”
Christie and Viner, 2009

18. What we already know……
•
•
•
•
•
Marked deterioration in glycaemic control
Increased incidence of loss to follow-up
Increased rates of emergency presentations
Transfer rather than transition leads to a “lost tribe”
10- 69% of young adults with diabetes have no medical
follow up after leaving paediatric care
• Disengagement with services leads to poor control &
increased risk of long term complications
• Diabetes services that are not tailored to the needs of
adolescents may be rejected
Can we do anything about this?

19. Transition Guidelines
• Encouraged to attend clinics on a
regular basis
• Sufficient time to familiarise
themselves with the practicalities
of transition
• Local protocols for transferring
young people with diabetes
• Advised that some aspects of
diabetes care will change at
transition
• Joint clinics between paediatric
and adult services would be ideal

20. Improving transitional diabetes care
There were two aims for the
project:
• To undertake an
assessment of current best
practice.
• To develop a future work
programme to improve
transition processes in
diabetes care.
NHS Diabetes Aug 2012

21. Improving transitional
diabetes care

22. Systematic review of transition models for young
people with long-term conditions: A report for NHS Diabetes
• What models or components of models are effective in ensuring
a successful transition process for young people with LTCs?
• What are the main barriers and facilitating factors in
implementing a successful transition programme?
• What are the key issues for young people with LTCs and
professionals involved in the transition process?
29 published studies (including 16 systematic reviews) of transition
from paediatric to adult secondary health care
services for young people with LTCs.
Kime N, Bagnall A-M, Day R. (2013) NHS Diabetes

23. Key Findings
• There are various transition models and no single model
was identified as the most effective.
Components of individual models for successful transition were:
• Young people-centred
- Individualised transition programme dependent on developmental
stage and circumstances. Started early and be flexible
• A planned and structured process
- Embedded in service delivery with clear expectations
- Designated transition clinics attended by both paediatric and adult
HCPs
- Orientation tours of adult clinics
- Post-transition support and monitoring
- Evaluation of young people’s outcomes
• Self-management education
- Continuous education programme with assessment of young
people’s self-management competencies, confidence and emotional
skills
Kime N, Bagnall A-M, Day R. (2013) NHS Diabetes

24. Key Findings
Multidisciplinary approach
- Transition needs to encompass inter- and intra- agency
communication and coordination.
Collaboration and communication
- Between paediatric & adult HCPs and young people and their families
before, during and after transition.
- Young person’s portfolio
Training of HCPs
- Highlight the importance of effective interpersonal and
communication skills.
A transition coordinator
- A need for a nominated individual to be responsible for overseeing
the management and administration of the transition process
Resources
- All sectors need to be committed to providing the necessary
resources
Kime N, Bagnall A-M, Day R. (2013) NHS Diabetes

25. Additional considerations…
Developmental Psychology
TRADITIONAL MODEL
YOUNG ADULTHOOD
ADOLESCENCE
CHILDHOOD
CONTEMPORARY MODEL
YOUNG ADULTHOOD
EMERGING ADULTHOOD
ADOLESCENCE
CHILDHOOD
Arnett JJ Am Psychol 2000;55:469–480

26. Developmental Psychology
YOUNG ADULTHOOD
EMERGING ADULTHOOD
Age late teens – mid 20s
Transitioning away from
the parental home :
• Geographically
• Economically
• Emotionally
• Medically
Age mid-20s to 30s
Maturing sense of:
• Self-identity
• Assume adult-like roles
• Stable relationships
• Full-time employment
• Plan for the future
Competing academic, economic, and
social priorities with potentially a high
rate of disengagement
Arnett JJ Am Psychol 2000;55:469–480

27. How do we improve the situation?
“Sir, I’m helping to put a man on the moon!”
Janitor NASA 1961

28. Healthcare Delivery & Chronic Disease
MACRO
National strategy
MESO
Local delivery
Regional networks
PCTs
Service
redesign
Individual level
MICRO
Diabetes Teams
Co-ordinated approach of ALL 3 improves
care & outcomes

29. Aiming for Best Practice
• Quality of the consultation more important than the
location, timing etc
– See young adult on their own for part of the consultation
– Non-judgemental, respect privacy
– Consistency of individual and approach
• Involve young people in service development
• Introduce the concept of transition earlier
• Involve a shared paediatric and adult MDT

30. Key Recommendations
•
•
All units be asked to sign up to the core values of a quality consultation.
Agree minimum standards for the contents of a transition policy
– Review policy initially through the paediatric diabetes network coordinators and then
formally through self-assessment, peer review and ultimately via Best Practice Tariff
(BPT).
•
•
•
•
•
•
Ensure there are paediatric and adult lead diabetologists.
An adult diabetologist on each of the regional paediatric networks.
Identify training needs for HCPs around young adult communication and
consultation skills.
Develop a health plan & transition planning process prompt sheets.
Improve the standard in the Best Practice Tariff on transition and consider
taking into account the age group 18 to 30.
Offer support to Diabetes UK

31. Diabetes Transition:
What your service should offer…
Process
•
•
•
•
•
•
An identified lead for transition in each paediatric and adult diabetes
service.
A joint paediatric/adult transition policy.
Evidence of consultation and user involvement in the policy
development.
The transition period last at least 12 months with input from
paediatric and adult teams over that period with at least one
combined appointment.
Experience of care audit.
Evidence of use of a shared care planning template e.g. the North
West Individual Transition Plan

33. Diabetes Transition:
What your service should offer…
Outcome
• DNA rates monitored and followed up over the course of the
transition period.
• Reduction in admissions for emergency DKA/hypoglycaemia.
• HbA1c levels less than 58 mmol/mol.
• Outcomes from a care audit to be undertaken by units.
• All standards relating to the implementation of Best Practice Tariff
for Paediatric Diabetes need to be met by all paediatric units.

36. Summary of Objectives of Service
•
•
•
•
•
•
•
•
•
•
•
To work with and empower young people ,both individually and collectively, in the
delivery and development of their care
To provide a service that achieves control of diabetes by conforming to guidelines
but is personalised to each individuals needs, values and preferences
To promote independence
To provide effective emotional and psychological support to people with diabetes
and their families
To minimise the impact of a move to higher education
To manage the transition to young adult services successfully
To prevent inequity
To promote research
To develop the skills of the generalist and specialist staff
To make the best use of resources
To produce an annual report about the population served

37. Moving Forward
• Adolescence & emerging adulthood is unique
• Planned purposeful transitional care is paramount
• Clear guidance regarding key components of transitional
care
• Modifying current models of care are required to make
them fit for purpose
• Most professionals don’t want to offer a poor service!
• If we don’t do it no one else will……..

38. Transitions of the young adult from
the paediatric to adult service
A final word…..
"Nothing in the world is worth having or worth
doing unless it means effort, pain &
difficulty...”
Theodore Roosevelt