Making research and education WICKED

Aim Develop and evaluate a model of care to improve self-management in T1DM specifically for young people aged years

The MRC Framework development: (identifying the evidence base, developing theory, modelling process and outcome); feasibility/piloting: (testing procedures, estimating recruitment, determining sample size); evaluation: (assessing effectiveness, understanding change process, assessing cost-effectiveness), and implementation: (dissemination, surveillance and monitoring long term follow-up). Eiser C et al. Using the Medical Research Council framework to develop a complex intervention to improve delivery of care for young people with type 1 diabetes. Diabet Med Jun;30(6):e doi: /dme Epub 2013 Apr 12.

Development Phase Semi-structured interviews about the diabetes service, what young people want from a new service and concerns about transition with -Staff (N = 15) -Parents (N = 18) -Young people aged 11 – 21 (N = 28) Brierley, S. Eiser, C. Johnson, B. Young, V. Heller, S. Working with young adults with Type 1 diabetes: Views of a multidisciplinary care team and implications for service delivery. Diabet Med May;29(5):677-81

Feasibility and Piloting of a Complex Intervention

WICKED Working with Insulin, Carbs, Ketones and Exercise to manage Diabetes In response to requests for age-specific education Allows young adults to be flexible in their care to fit it around their lifestyle Young adults recruited in clinic Beer et al (in press). WICKED: the development and evaluation of a psycho-education programme for young people with type 1 diabetes. Journal of diabetes nursing.

Feedback from CLAHRC Phase 1 research: need for structured education for young people 2 diabetes nurse specialists and specialist dietitian to deliver age- appropriate DAFNE? FEB ‘11 The very beginning…

MAY ’11: REVIEWING THE DELIVERY OF AGE-APPROPRIATE DAFNE: Too much info, some repetition and irrelevance Need more guidance on social activities, alcohol and drug use. Days too long, too few breaks Too didactic More support needed after course Feedback from pilot groups…

MAY – AUG ’11 INITIAL DEVELOPMENT OF WICKED Better name - WICKED! Shorter days more breaks over the 5 days and follow-up at 3, 6, 9 & 12 weeks. Age-appropriate alcohol & drugs session. Input from Sheffield University Dept of Education Learning objectives more relevant to young people Include games and activities Blood glucose profiles tracked with WICKED graph No hospital food plus a meal out Customized resources …in response to feedback

What’s different? Assessment for Learning Flexibility within the Scheme of Work Schemes of work – some / most / all Recap of day before - Quiz – Higher / lower – White-boards – Choose a napkin Tailored, small group working (engineered)

AUG ’11 –WICKED pilot course 9 attendees, 16 – 20 years Observed by Academic Educationalists Individual evaluations & feedback from Educationalists

AUG ’11 – WICKED feedback The most helpful week of my diabetes life! Made me think about my diabetes more The whole week has been a brilliant experience and I am so grateful for it! Cheers! Really helped my confidence with moving out and going to University WICKED is a fun and interesting way to learn more about your diabetes, how it works, and how certain things affect your blood sugar Best course you can do if you struggle with diabetes. It goes back to basic and explains things you never knew. Now I can control my diabetes

MAY ’12: THE FULL WICKED PROGRAMME DEVELOPED! The Scheme of Work includes: Assessment for Learning Clear aims Structured timetable including meals and breaks WICKED shopping list Resources including crib sheets, worksheets, games, quizzes & postcards Follow-up: Meetings at 3, 6, 9, weeks in a coffee shop (and 12 weeks in clinic) Texts inbetween + extra if YP DNAs FU - keyworker

WICKED EXPERIENCE Individualised and tailored Take small steps, set subjects, not set times Give a consistent message that any improvement is positive…….(small steps) Talk about support/helping others who are finding diabetes difficult (and actively engineer it) Patients set their own targets ……… Always enthusiastic and proactive……

Evaluation - Participant Characteristics 47 young people (YP) attended one of 6 courses 11 were on pumps Five were very newly diagnosed (3 days – 13 weeks) For the remaining 42: 22 female – (M = 18.16, SD = 1.47) years Time since diagnosis: 1.22 – (M = 8.70, SD = 5.09) years Mean HbA1c: mmol/mol 5 young people reached the clinical target of <58 mmol/mol

WICKED attendance and follow-up Attendance – 87.9% attended all sessions Follow-ups – Well-attended 3–week group sessions often requested, group session for 6 – week follow-up – Informal sessions – evidence of contact between group members since course and partners did attend these sessions

What happens to HbA1c? NBaselineFollow-UpSig 3-month n.s 6-month n.s

Psychosocial Impact Self-efficacy – Increases significantly after the course Positive Outcome Expectancies of Management e.g. Make me feel good about myself. – Increase significantly after the course Perceived Knowledge – Increases significantly after the course

Feedback from young people Before the course Worried it would be like school and a list of what not to do The experience exceeded expectations “You’re not being told what to do you’re being advised... but you don’t have to its up to you” (FG5). “was nice to find out that not everyone else is perfect, and it is possible to do well”

Feedback from young people Liked interactive activities “kind of sunk in easier than it would if it were just like copying something of a board” Plotting sugars helped “visualise it better” and “It were nice to hear other people’s results as well” Positive about content “They actually talked about stuff that we would do like alcohol and drugs and stuff and sex and that.

Acknowledgements This research was supported by NIHR CLAHRC for South Yorkshire WICKED Educators - Vanessa Whitehead, Rebekah Beer, Glynis Feerick, Kay Bottrell Psychology Team - Barbara Johnson, Sue Beveridge, Samantha Brierley, Christine Eiser, Jackie Elliott, Simon Heller, Kath Price, Adrian Scott, Victoria Young Sue Beveridge, Dr Jackie Elliott, Prof Simon Heller, Dr Kath Price, Dr Adrian Scott