WELCOME TO AMSTERDAM MIND WORKSHOP 15 December 2006

1. WELCOME TO AMSTERDAMMIND WORKSHOP15 December 2006

2. Background The DAWN MIND project

3. Importance of psychological well-being in diabetes is generally acknowledged • Well-being (QoL) is an important outcome of diabetes care in itself (WHO-definition of health: more than the absence of illness) • Poor psychological functioning can seriously impede on daily self-management, thereby negatively impacting outcomes (e.g. depression > glycaemic control)) • Evaluation and management of psychosocial functioning should be integral part of diabetes care (see ADA, IDF, ISPAD guidelines)

4. The Reality? • Psychosocial research suggests mental health needs of people with diabetes are largely unmet • Poor quality of psychosocial care

5. Objectives DAWN study: • To understand attitudes, wishes and needs of people with diabetes and their care givers, across countries/cultures • To identify areas for the improvement of the psychosocial management of diabetes

6. The DAWN International Expert Advisory Board • Prof. David Matthews (UK)Oxford Centre for Diabetes, Endocr. & Metabolism • Prof. Frank Snoek (NL)Vrije Universiteit, Dept. of Medical Psychology Chairman, PSAD study group, EASD • Ruth Colagiuri (Aus)VP, Australian Diabetes Educators Association Director, Australian Centre for Diabetes Strategies • Dr. Line Kleinebreil (F) DiabCare France, Hôpital Jean Verdier • Prof. Rüdiger Landgraf MD (G) Medizinische Klinik, Universität München • Dr. Giacomo Vespasiani (I)Centro di Diabetologia e Malattie del Ricambio • Dr. Hitoshi Ishii (J) Tenri Yorozu Soudanjyo Hospital • Dr. P.H.L.M. Geelhoed (NL) Haaglanden Hospital, The Hague • Dr Richard Rubin (USA) Johns Hopkins University School of Medicine • Ib Brorly (DK)Person with type 2 diabetes • Prof. Torsten Lauritzen (DK)Aarhus University

7. Study methodology • Australia • France • Germany • India • Japan • Netherlands • Poland • Scandinavia • Spain • UK • USA • Structured telephone or face-to-face interviews (30-50 mins.) of: • 5.400 adults with diabetes • 3.850 healthcare providers • 2.200 physicians • 550 specialist physicians • 500 nurses • 600 specialist nurses

8. How do patients feel about their diabetes?% of patients agreeing with statement Base: All Respondents “I worry about not being able to carry out my family responsibilities in the future” “My diabetes causes me worries about my financial future” “When I feel anxious and depressed, I have no one to turn to” PQ3.18: To what extent do you agree with the following statement?[4=Fully agree; 1=Fully disagree]

9. HCP’s: are you able to provide psychological support for people with diabetes? “I am able to provide all the psychological support my patients need” Primary care physician 61 Specialist* 50 38 Nurse† 0 20 40 60 80 100 % agreeing *Medically qualified specialist †Nurse/nurse specialist

10. Key findings DAWN ► Psychosocial problems and poor self-management is a worldwide issue ► Overall there is poor access to psychosocial support in routine diabetes care ► Colloborative care associated with better patient-reported outcomes – but many patients lack access to team care (particularly those most in need, i.e. with complications)

11. DAWN Key Publications • Psychosocial barriers to improved diabetes management: Diabetic Medicine 2005; 22: 1375-1385 • Physician and nurse use of psychosocial strategies in diabetes care: Diabetes Care 2006; 29: 1256-1262 • Patient and provider perceptions of care for diabetes: Diabetologia 2006; 49: 279-288 • Health care and patient-reported outcomes: Diabetes Care 2006; 29: 1249-1255 • Resistance to insulin therapy among patients and providers: Diabetes Care 2005; 28: 2673-2679

12. The DAWN framework for taking action • Raise awareness and advocacy • Mobilise people with diabetes • Drive policy and health-care systems change • Train healthcare providers • Provide practical tools and systems • Develop psychosocial researchin diabetes • DAWN Summits

13. Core Recommendations IDF Guidelines (2005) • Model of care based on partnership and empowerment • Multidisciplinary care teams • Provide appropriate education and lifestyle counselling • Regular assessment of psychological problems • Referral to specialised psychosocial care provider • Provide counselling by appropriately skilled members of the diabetes care team

14. Psychosocial problems common among people with diabetes • Adaptation/coping problems • Depression • Anxiety • Eating disorders • Sexual dysfunction • Inter-relational problems

15. Odds and Prevalence of Depression in 18 Controlled Studies 2.0 (1.8-2.2) OR (95% CI) The odds of depression were doubled in diabetics compared to controls. Depression prevalence (%) Non-diabetics Diabetics Anderson et al., 2001

16. MIND project: Monitoring Individual Needs in persons with Diabetes 2006-2009

17. The MIND project – a DAWN initiative • International collaborative study: Europe (8), Mexico, Argentina • Nurse-led computerised assessment of emotional well-being, based on annual review procedure developed at VU medical centre Amsterdam • Feedback and discussion of outcomes with patient, to agree on actions and follow-up • Evaluation of impact on process of care and clinical outcomes of two annual assessments (12 months) • DAWN MIND Data base > publications, presentations • Further implementation DAWN MIND > primary diabetes care

18. Participating centres: Europe Collecting data • STENO Diabetes Centre, Copenhagen, Denmark (Dr Ebbe Eldrup) • Oxford Centre for Diabetes Endocrinology and Metabolism (OCDEM), UK (prof David Matthews) • Mergentheim Diabetes Zentrum, Mergentheim, Germany (Dr Norbert Hermanns, Dr Bernd Kulzer) • University College Hospital, Galway, Ireland (Dr Brian McGuire, Dr Sean Dinneen) • VU University Medical Centre, Amsterdam, Netherlands (prof Frank Snoek) • Vuk Vrhovac University Clinic, Zagreb, Croatia (prof Mirjana Pibernik-Okanovic) • Poradnia Diabetologiczna, Warsawa, Poland (prof Andrzej Kokoszka)

19. Participating centres: Outside of Europe Collecting data Mexico • Diabetes Program Hidalgo, Mexico (Dr Joel Rodriguez Saldaña) Argentina • Centre for Experimental and Applied Endocrinology, National University La Plata National research Council/PRODIACOR, Argentina (prof Juan Jose Gagliardino)

20. Participating centres: Europe Confirmed interest and ready for next steps • Ben Gurion University of the Negev, Beer Sheva, Israel (prof Ilana Harman-Boehm) • Vrije Universiteit Brussels, Brussels, Belgium (Dr Christel Hendrieckx) • Bispebjerg Hospital, Copenhagen, Denmark (Dr Hans Perrild) • Kiev Hospital, Kiev, Ukraine (Elena Sakalo)

21. Research questions The DAWN MIND project will hope to answer the next 5 questions: • What topics/themes do patients indicate for discussion and how do these relate to well-being scores, clinical parameters and patient demographics on T1 (at 0 months) and T2 (at 12 months)? • What is the level of well-being of diabetes outpatients on T1? • How many patients are likely depressed and/or distressed • What are the medical and socio-demographic characteristics of patients in poor well-being, compared to those reporting good well-being

22. Research questions (continued) 3. What percentage of patients in poor well-being are receiving (which) psychological support, and what are their characteristics compared to those not receiving psychological support? • How do the level of well-being and glycaemic control correlate on T1 compared to T2? • What actions have followed the monitoring procedure at T1 (e.g. consultations, examinations, referrals)? • What percentage of patients has received psychological support between T1 and T2? • How do well-being outcomes correlate with clinical parameters (glycaemic control, complications, co-morbidity) on T1 and T2?

23. Start of DAWN MIND project Finalizing protocol Modification of Health Quest program Workshop Start implementing monitoring procedure (T1) Follow up at T2 (after 12 months) Finalizing data collection + analyzing data OCT 2007 Timeline (2006 – 2009)