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Implementing a structured education programme for young people with diabetes: lessons learned

Implementing a structured education programme for young people with diabetes: lessons learned. Dr David Chaney Senior Education Specialist IDF. Diabetes is a huge and growing problem…. 382 million people have diabetes By 2035, this number will rise to 592 million. Background.

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Implementing a structured education programme for young people with diabetes: lessons learned

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

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

  3. 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

  4. 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)

  5. Need for Structured Education No structured education programme being delivered within the UK specifically tailored to the needs of adolescents (DoH, 2005) • 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

  6. 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?

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

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

  9. Choice Study design Randomisation Usual Care Invitation to participate Baseline Data 1 mth 3 mths 6 mths 12 mths 24 mths Intervention Group Choice Education Programme Text support

  10. 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)

  11. 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

  12. 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

  13. HbA1c

  14. 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

  15. Lessons Learned

  16. Poor Mathematical Ability • Poor Maths: • Carb counting • Dose adjustment • Leads to embarrasment

  17. Participant Disruption • See by parents as needed but not by teenager • Poor concentration • Poor engagement

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

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

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

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

  22. Age • To mix or not to mix?

  23. Implementation Issues • Costs • Resources • Access • Facilities • Motivated staff • Trained Staff

  24. 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

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

  26. What Did You Most Enjoy?

  27. What Did You Least Like?

  28. Acknowledgements • Roche Diagnostics • Participants • Families • Diabetes Teams • Everyone who contributed

  29. 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)

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