1. Implementing a structured education programme for young people with diabetes: lessons learned Dr David Chaney Senior Education Specialist IDF

3. Diabetes is a huge and growing problem… 382 million people have diabetes By 2035, this number will rise to 592 million

5. “One person dies of Diabetes every six seconds”

6. Background Approx. 490,000 children around the world haveType 1 diabetes, with 77,000 new cases being diagnosed each year (IDF, 2013) Complex regime of self-care practices in order to achieve optimal glycaemic control and reduce potential acute and long-term complications Self-management seen as – restrictive –behaviourally challenging –complicated

7. Background Adolescence is a time of transition: –Physical and cognitive development –desire for autonomy –rebelling and increased experimentation / risk taking –A reduction in parental involvement Associated with a significant deterioration in blood glucose control

8. Structured Education Education is the keystone of diabetes care and structured self-management education is the key to a successful outcome. Definition of Diabetes Education: “The process of providing the person with the knowledge and skills needed to perform diabetes self-care, manage crises and to make lifestyle changes to successfully manage the disease”. (ISPAD 2009)

9. Need for Structured Education NICE (2004) –learning needs assessment –quality assurance –accreditation –an identified curriculum –trained educators Diabetes UK & DoH (2005) –Structured agreed written curriculum –Uses trained educators –Is quality assured –Is audited No structured education programme being delivered within the UK specifically tailored to the needs of adolescents (DoH, 2005)

10. Purpose & Research Questions Purpose: To evaluate the effectiveness of a structured education programme (CHOICE) about diet and insulin management for adolescents between 13 – 19 yrs diagnosed with type 1 diabetes Research Questions: –Does a structured diabetes education programme for adolescents improve glycaemic control, perceived quality of life, perceived empowerment and management strategies at 1, 3, 5, 12 and 24 months post intervention? –Does improved ability to manage diabetes in adolescence lead to weight gain?

11. What do Adolescents Want? ‘You Can Do’ Be Positive Practical Short Real Life Contact by Txt Any room will do Independence Balance of Involvement Need to be Independent Trust Parental Support What Young People Want Striking the Balance Removal of Guilt Reduce Frustration Increase Knowledge Reduce Restriction Remove the Fear Take Control Eliminate Confusion It’s a Guessing Game Your on Your Own Your Always Different Isolation Why do they want these things InsulinFood

13. Hospitals Involved Daisy Hill Hospital Royal Victoria Hospital Royal Belfast Hospital for Sick Children Craigavon Area Hospital Ulster Hospital Altnagelvin Hospital

14. Choice Study design Invitation to participate Randomisation Baseline Data Usual Care Intervention Group 1 mth3 mths6 mths12 mths24 mths Choice Education Programme Text support

15. Follow Up For 24 months and included Metabolic data –HbA1c –No. Hypo’s –BMI / weight / height Psychosocial data –Quality of Life –Empowerment –Self- management strategies (all pre-validated instruments)

16. Timetable Week 1 –Recap on diabetes –Carbohydrate estimation –Own portion size Week 3 –Dinning out –Hypoglycaemia –Blood glucose monitoring –Adjustment of insulin dose Week 2 –Recap on Diet –Hidden sources of carbohydrate –Correction dose Week 4 –Planning for physical activity –Travelling –Family & Friends –Drugs & Alcohol

17. Recruitment Figures Total target population: –400 Total who agree to be approached: –270 Total who agree to take part: –142 Of Which: –67 Control –67 Intervention –4 allocated to intervention unable to undertake it

18. HbA1c Participants MinMaxMeanSD HbA1c5.6014.208.881.48

19. Findings Metabolic –No difference in HbA1c –No difference in weight / BMI –Increase in perceived control Psychological results: –QoL better at months 3 and 6 then reverted –No difference in Empowerment –No difference in Self management Strategies

20. Lessons Learned

21. Poor Mathematical Ability Poor Maths: –Carb counting –Dose adjustment –Leads to embarrasment

22. Participant Disruption See by parents as needed but not by teenager –Poor concentration –Poor engagement

23. Maintaining Motivation It’s never ending It’s complicated It’s challenging There’s no rest How would you do?

24. Difficulty Recruiting Unwilling to attend Too many competing interests –I know it already –School activities –Football –Swimming –Horse riding –…

25. Poor Understanding of Nutritional Concepts Some had not seen many vegetables Some thought eggs went in dairy

26. Already Established Poor Habits Need to catch early after diagnosis Essential to promote active engagement from the beginning

27. Age To mix or not to mix?

28. Implementation Issues Costs Resources Access Facilities Motivated staff Trained Staff

29. The Way Ahead CHOICE was adjusted: –Tailored for all ages –More involvement of parents –Rolled out across Northern Ireland and Border Counties of Republic of Ireland –Integrated as routine care

30. Result Six month analysis post amended CHOICE Provided by: Dr Muhammad Sartaj

31. What Did You Most Enjoy?

32. What Did You Least Like?

33. Acknowledgements Roche Diagnostics Participants Families Diabetes Teams Everyone who contributed

34. Steering Group Dr David Chaney (Nurse) Prof Viv Coates (Nurse) Dr Mark Shevlin (Psycholoy) Prof Brendan Bunting (Stats) Dr Dennis Carson (Consult.) Dr Hilary Tennet (Doctor) Ms Moyra Campbell (Nurse) Ms Andrea McDougall (Dietit.) Ms Fiona Clements (Nurse) Ms Michelle Patterson (Nurse) Pro. Patrick Bell (Consult.) Ms Una McElearn (Nurse) Ms Oonagh McGlone (Nurse) Mr Mark Kellet (Roche) Dr Mary Morris (Psychologist) Dr Colin Gaston (Consult.) Dr Sheila McGovern (Doctor) Ms Arlene Long (Dietitian) Ms Lorraine Rooney (Nurse) Dr Roy Harper (Consult.) Ms Nicky Fuller (Nurse) Ms Lynne Thomas (Dietitian) Dr Bernie Traynor (Consult.) Ms Daphne Patterson (Nurse) Dr John Lyndsay (Consult.) Ms Ann Marie McDaid (Nurse) Dr Maurice O’Kane (Consult.) Dr Ken Moles (Consult.) Mr Steve Williamson (Roche) Ms Linda Irwin (Nurse) Ms Frances Murphy (Nurse) Ms Lorraine Bell (Dietitian) Dr Chris Corkey (Consult.) Ms Olivia Creaney (Nurse) Ms Jeanette Newell (Nurse) Ms Sally Griffin (Nurse) Ms Paula Conal (Nurse) Ms Pauline Ingram (Nurse)