Children and Young People with Diabetes fiona campbell


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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

NHS Improving Quality held an event in London on 31 July 2013 to progress the children and young people transition to adult services work with a focus on turning the rhetoric into practice entitled “Working to Define a Generic Service Specification for Transition”

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  • The DCCT results clearly show that the higher the HbA1c, the greater the risk of complications.
    If we look at the chart we can see that if your HbA1c is 9%. Then you are 5 times more likely to have Retinopathy than if your HbA1c was 6%. If your HbA1c is 11% then you are 13 time more likely!
  • During the early phase of emerging adulthood, the person may be transitioning geographically, economically, and emotionally away from the parental home.
    Competing academic, economic, and social priorities often detract from a focused commitment to chronic disease management. Even as young adults face these competing demands, most do not believe that they have achieved all of the skills necessary to remain independent and accept these responsibilities on their own
    During the second phase of the young adult period, the 25- to 30-year-old often has a maturing sense of identity and assumes adult-like roles in society, such as entering into stable intimate relationships or full-time employment. This phase, when the individual starts making plans about his/her future life, is often accompanied by a growing recognition of the importance of striving for better glycemic control and receptiveness to improving self-care behavior.
  • Children and Young People with Diabetes fiona campbell

    1. 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. 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. 3. National Diabetes Audit Mortality Report %20reports/NHS_Diabetes_Audit_Mortality_Report_2011_V2.0.pdf
    4. 4. National Diabetes Audit 2009/2010 HbA1c
    5. 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. 6. Successful and Complication Free Life
    7. 7. 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)
    8. 8. Transition: Closing the Gap between Child & Adult Services
    9. 9. 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
    10. 10. 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….
    11. 11. 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.
    12. 12. Current perceptions? Paediatric Services Adult Services …….. except no free cookie!
    13. 13. 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
    14. 14. 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
    15. 15. 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?
    16. 16. 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
    17. 17. 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
    18. 18. Improving transitional diabetes care
    19. 19. 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
    20. 20. 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
    21. 21. 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
    23. 23. 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
    24. 24. How do we improve the situation? “Sir, I’m helping to put a man on the moon!” Janitor NASA 1961
    25. 25. 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
    26. 26. 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
    27. 27. 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
    28. 28. 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
    29. 29. 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.
    30. 30. 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
    31. 31. 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……..
    32. 32. 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