Dr Fiona M CampbellConsultant Paediatric Diabetologist

Leeds Teaching Hospitals Trust &

NHS Diabetes Clinical Lead for Paediatric Diabetes Network

Development

NHSE Transition Scoping Event July 2013

Children and Young People with DiabetesA National Approach to Improving Care

and Outcomes

Diabeticretinopathy

Leading causeof blindnessin working-ageadults

Diabeticnephropathy

Leading cause of end-stage renal disease

Cardiovasculardisease

Stroke

2- to 4-fold increase in cardiovascular mortality and stroke

Diabeticneuropathy

Leading cause of non-traumatic lower extremity amputations

8/10 diabetic patients die from CV events

The Human Costs Of Diabetes

Life Expectancy is reduced by 23 years in patients with Type 1 diabetes when diagnosed under the age of 10 years

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

National Diabetes Audit 2009/2010 HbA1c

1

3

5

7

9

11

13

15

6 7 8 9 10 11 12

Retinopathy

Nephropathy

Neuropathy

HbA1c

Rel

ativ

e R

isk

of

Co

mp

licat

ion

s

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.

DCCT RESULTSHbA1c and Relative Risk of Diabetic Complications

6.5*

( “X

” ti

mes

mor

e lik

ely)

Successful and Complication Free Life

National Service FrameworkStandard 6Standard 6 “All young people with diabetes will

experience a smooth transition of care from paediatric diabetes services to adult diabetes services, whether hospital or community-based, 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)

Transition: Closing the Gap between Child & Adult Services

What is transition?What is transition?Definition for diabetes transition:

“The period of time during which there is plannedplanned, purposefulpurposeful and supportedsupported 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

Who is this person?Who is this person?Do they know Do they know

anything?anything?Doubt IDoubt I’’ll be back….ll be back….

How do we get back to Childrens services?

That’s NOT what the Paediatric team

said!!

Semi-intelligent comment about

patients care

Why is transition important?Why is transition important?

If only I knew what the Paediatric team said!

Is transition really important?Is transition really important?

• 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.

Cynics View

Current perceptions?

Paediatric Services

Adult Services

…….. except no free cookie!

Why is transition important?Why is transition important?

• 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.

• High risk period and transfer of careHigh risk period and transfer of care

• Improved outcomes if supportedImproved outcomes if supported

• Health behaviour established in adolescence Health behaviour established in adolescence is maintained in adulthoodis maintained in adulthood

Enthusiasts counter arguements

• “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

What we already know……What we already know……

What we already know……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?Can we do anything about this?

Transition GuidelinesTransition 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

Improving transitional diabetes careImproving 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

Improving transitional Improving transitional diabetes carediabetes care

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

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

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

Key Findings

Kime N, Bagnall A-M, Day R. (2013) NHS Diabetes

CHILDHOODCHILDHOOD

ADOLESCENCEADOLESCENCE

YOUNG ADULTHOODYOUNG ADULTHOOD

CHILDHOODCHILDHOOD

ADOLESCENCEADOLESCENCE

YOUNG ADULTHOODYOUNG ADULTHOODCONTEMPORARY MODEL

EMERGING ADULTHOODEMERGING ADULTHOOD

Arnett JJ Am Psychol 2000;55:469–480

TRADITIONAL MODEL

Developmental Psychology

Additional considerations…

Age late teens – mid 20sTransitioning away from the parental home :• Geographically• Economically• Emotionally• Medically

Age mid-20s to 30sMaturing sense of:• Self-identity • Assume adult-like roles• Stable relationships • Full-time employment• Plan for the future

Competing academic, economic, and Competing academic, economic, and social priorities with potentially a high social priorities with potentially a high

rate of disengagementrate of disengagement

YOUNG ADULTHOODYOUNG ADULTHOOD

EMERGING ADULTHOODEMERGING ADULTHOOD

Arnett JJ Am Psychol 2000;55:469–480

Developmental Psychology

“Sir, I’m helping to put a man on the moon!” Janitor NASA 1961

How do we improve the situation?How do we improve the situation?

Healthcare Delivery & Chronic DiseaseHealthcare Delivery & Chronic Disease

Co-ordinated approach of ALL 3 improves Co-ordinated approach of ALL 3 improves care & outcomescare & outcomes

MACROMACRO

MICROMICRO

MESOMESONational strategy Local delivery

Individual level

Regional networks

PCTs

Service redesign

Diabetes TeamsDiabetes Teams

Aiming for Best PracticeAiming 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

Key RecommendationsKey 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

Diabetes Transition: What your service should offer…

ProcessProcess• 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

Diabetes Transition: What your service should offer…

OutcomeOutcome• 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.

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

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……..

Transitions of the young adult from Transitions of the young adult from the paediatric to adult servicethe paediatric to adult service

"Nothing in the world is worth having or worth doing unless it means effort, pain

& difficulty...” Theodore Roosevelt

A final word…..