1. Laura Grant 1, Julia Lawton 2, David Hopkins 3, Jackie Elliott 4, Suzanne Lucas 5, Marie Clark 6, Ian MacLellan 7, Mark Davies 8, Simon Heller 4 & Debbie Cooke 9 1 Adelphi Values, Manchester 2 University of Edinburgh; 3 King’s College Hospital, 4 University of Sheffield, 5 Diabetes Modernisation Initiative, London, 6 University College London, 7 Ian MacLellan, DAFNE User Action Group (DUAG), 8 Belfast City Hospital, 9 University of Surrey Identifying Core Components of Structured Education Courses for Type 1 Diabetes

2. Introduction From multiple fixed doses of insulin to more complex insulin adjustment Reduced risk of severe hypoglycaemia & improvements in overall HbA1c Developed in Dusseldorf, Germany Structured education programmes, DAFNE & BERTIE Existing measures did not capture the current approach to type 1 diabetes management

3. Aims Describe and compare the way structured education courses for type 1 diabetes have evolved in the UK, so that we could Develop, pilot and validate a questionnaire assessment tool of diabetes-specific self-care behaviours, for adults with type 1 diabetes.

4. Methods 83 courses on Diabetes Education Network 28 met NICE criteria + 1 from manual internet searching Reason for exclusionNumber of courses No reply3 courses Course in development4 courses Based directly on DAFNE or BERTIE6 courses Education for both type 1 and type 22 courses Course too specific e.g. newly diagnosed2 courses Not enough information2 courses Missing data on QA and audit2 courses

5. Educators from 5 courses were interviewed (April-June 2011) Consensus meeting with 15 key stakeholders DAFNE, BERTIE, ICE, SELECT & DAISY Methods

6. Core Components of Courses Core Components from Interviews Carbohydrate counting and insulin dose adjustment Hypoglycaemia management Group work Goal setting Challenges Empowerment

7. Summary of Process Identified the core components of diabetes structured education Related these components to self-care behaviours Develop a questionnaire tool to assess the extent to which people carry out these behaviours

8. Example Questionnaire Items Routine BG Monitoring (6 items) - I check my blood glucose when I am physically active e.g. walking, gardening - On average, over the last 2 weeks, how many times have you checked your blood glucose each day? - I carried my blood glucose meter with me Recording & Reflecting on BG Monitoring (3 items) - I recorded my blood glucose results e.g. in a diary, on a computer - I recorded information that could affect my blood glucose levels e.g. carbohydrate intake, insulin dose, exercise - I looked for trends or patterns in my recorded blood glucose levels and used this to adjust my quick-acting insulin

9. Example Questionnaire Items Checking Ketones (2 items) [when ill] I check my ketone levels when my blood glucose is higher than normal Timing of Quick-Acting Insulin with Meals (2 items) - I took my quick-acting insulin before meals - I took my quick-acting insulin after meals Adjusting Quick-Acting Insulin to Carbohydrate Intake (2 items) - I adjusted my QA insulin according to the carbohydrate I was eating - I counted the carbohydrates I ate I take less insulin than recommended (5 items) - to try to avoid putting on weight - because I am fed up with my diabetes Response Format 5-point Likert Scale ‘never’ to ‘always’ for majority of items

10. 611 adults with type 1 from 16 hospitals NMinMaxMean Std Dev HbA1c (mmol/mol)5845.415.18.21.4 IFCC584351416715.2 Age61018864714.8 Duration6006 mth732515.5

11. Total NN% Attended structured educ608 Yes37662 No23238 Gender610 Male27245 Female33855 Educational level609 Below degree level37561 Undergraduate degree and higher 23438 Diabetes complications611 Yes29648 No39552

12. Example Items: How did people respond? N% Never16326.7 Rarely6510.6 Sometimes487.9 Often6310.3 Always26643.5 Total60599.0 Missing99961.0 Total611100.0 I recorded my blood glucose results e.g. in a diary, on a computer

13. Example Items: How did people respond? N % Never23338.1 Rarely8213.4 Sometimes7311.9 Often8213.4 Always8313.6 Total55390.5 Missing 99971.1 System518.3 Total589.5 Total611100.0 [when ill] I check my ketone levels when my blood glucose is higher than normal

14. Example Items: How did people respond? Taking less insulin than recommended 111 participants (18%) took less insulin than recommended for one or more of the reasons listed: -To try to avoid putting on weight -Fed up with diabetes -Do not like injecting -Do not like thinking about diabetes

15. EducNMean (sd)Score Range tdfSig. Routine BG monitoring Yes35825.9 (4.6)6-313.6575.000 No21924.4 (4.9) Recording & reflection Yes3739.4 (4.1)3-153.0598.003 No2278.4 (3.9) Monitoring ketonesYes3424.6 (2.6)2-103.5544.000 No2043.8 (2.5) Checking long-acting dose Yes3103.6 (0.7)2-10-3.1503.002 No1953.8 (0.5) Comparing behaviours: structured education vs. none

16. No significant differences: Timing of QA with meals, Dose correction, Adjusting QA insulin in specific situations, Rotating injection/infusion sites, Carrying appropriate hypo treatments, Changing BG levels before showing nurse/Dr, Avoiding checking BG when high EducNMean (sd)Score Range tdfSig. Routine BG monitoring Yes35825.9 (4.6)6-313.6575.000 No21924.4 (4.9) %Chi Do not always attend diabetes appts Yes3749n/a4.61.03 No23115

17. ModelBStd. Error BetatSig. Educational level-.31.12-.11-2.50.013 Diabetes duration-.01.00-.07-1.45.147 Insulin pump/MDI.19.15.061.30.195 Attended structured education-.00.13.00-.01.996 Routine BG monitoring-.03.01-.09-1.87.062 Recording & reflection-.01.02-.03-.68.499 Monitoring ketones.12.03.224.92.000 Timing of QA with meals-.05.02-.09-2.04.042 Adjusting insulin to carb intake-.09.04-.13-2.62.009 Insulin omission-.24.18-.06-1.36.175 Carrying hypo treatments-.20.16.061.27.205 Over-treating hypos-.16.06-.12-2.71.007 Changing BG levels for dr/nurse.69.24.132.85.005 Avoiding testing when high.11.15.03.71.480 Rotating injection/infusion sites-.07.08-.04-.88.380 Attending clinic appointments.31.21.071.45.148

18. Summary Developed questionnaire to measure self-care behaviours in type 1 diabetes that reflect current approaches to management Examined differences in self-care behaviours between those who have and haven’t done structured education Explained 23% of variance in HbA1c using some of these behavioural variables. Why only 23%?

19. d.cooke@surrey.ac.uk Laura.grant@adelphivalues.com Acknowledgments: Thank you to all the participants and DEN Funder: NIHR Research for Patient Benefit Programme