J Nano1,2,3, F Carinci4, O Okunade5, S Whittaker5, M Walbaum6, K Barnard-Kelly7, D Barthelmes8,9, T Benson10,11,12,13, R Calderon-Margalit14, J Dennaoui15, S Fraser16, R Haig10, S Hernández-Jimenéz17, N Levitt18, J C Mbanya19, S Naqvi20, A L Peters21, M Peyrot22, M Prabhaharan10, A Pumerantz23, J Raposo24, M Santana25, A Schmitt26, S E Skovlund27,28, A C Garcia-Ulloa17, H-L Wee29,30, J Zaletel31,32, M Massi-Benedetti33. 1. Institute of Epidemiology, Helmholtz Zentrum-Munich, German Research Centre for Environmental Health, Munich, Germany. 2. German Centre for Diabetes Research, Munich, Germany. 3. Department of Epidemiology, Erasmus Medical Centre, Rotterdam, the Netherlands. 4. Department of Statistical Sciences, University of Bologna, Bologna, Italy. 5. International Consortium for Health Outcomes Measurement, Boston, MA, USA. 6. Institute of Epidemiology, University College London, London, UK. 7. Bournemouth University, Bournemouth, UK. 8. Department of Ophthalmology, University Hospital Zurich, University of Zurich, Zurich, Switzerland. 9. Save Sight Institute, University of Sydney, Sydney, Australia. 10. Patient member of the ICHOM diabetes Working Group, Jerusalem, Israel. 11. WHO Patients for Patient Safety Champion, Jerusalem, Israel. 12. Senior representative Consumers Health Forum of Australia, Jerusalem, Israel. 13. Senior Representative for Health Consumers Council of Western Australia, Jerusalem, Israel. 14. Hadassah-Hebrew University School of Public Health, Jerusalem, Israel. 15. National Health Insurance Company, Daman, United Arab Emirates, Belize. 16. Belize Diabetes Association, Belize. 17. Instituto Nacional de Ciencias Médicas y Nutrición, Salvador Zubirán, México. 18. Department of Medicine, University of Cape Town, Cape Town, South Africa. 19. Department of Internal Medicine and Specialties, Faculty of Medicine and Biomedical Sciences, University of Yaoundé 1, Yaoundé, Cameroon. 20. Imperial College London Diabetes Centre, Abu Dhabi, United Arab Emirates. 21. Keck School of Medicine of the University of Southern California, Los Angeles, CA, USA. 22. Loyola University Maryland, Baltimore, MD, USA. 23. Department of Population Health, College of Osteopathic Medicine of the Pacific, Western University of Health Sciences, Pomona, California, United States. 24. APDP-Diabetes Portugal and Nova Medical School, Lisbon, Portugal. 25. Cumming School of Medicine, Libin Cardiovascular Institute Alberta, Departments of Pediatrics and Community Health Sciences, Cumming School of Medicine, University of Calgary, Alberta, Canada. 26. Diabetes Centre Mergentheim, Bad Mergentheim, Germany. 27. Clinical Institute, Aalborg University, Aalborg, Denmark. 28. Steno Diabetes Centre North Denmark, Aalborg University Hospital, Aalborg, Denmark. 29. Saw Swee Hock School of Public Health, National University of Singapore and National University Health System, Singapore. 30. Department of Pharmacy, Faculty of Science, National University of Singapore, Singapore. 31. National Institute of Public Health, Ljubljana, Slovenia. 32. University Medical Centre Ljubljana, Slovenia. 33. Hub for International Health Research (HIRS), Perugia, Italy.
Abstract
AIMS: To select a core list of standard outcomes for diabetes to be routinely applied internationally, including patient-reported outcomes. METHODS: We conducted a structured systematic review of outcome measures, focusing on adults with either type 1 or type 2 diabetes. This process was followed by a consensus-driven modified Delphi panel, including a multidisciplinary group of academics, health professionals and people with diabetes. External feedback to validate the set of outcome measures was sought from people with diabetes and health professionals. RESULTS: The panel identified an essential set of clinical outcomes related to diabetes control, acute events, chronic complications, health service utilisation, and survival that can be measured using routine administrative data and/or clinical records. Three instruments were recommended for annual measurement of patient-reported outcome measures: the WHO Well-Being Index for psychological well-being; the depression module of the Patient Health Questionnaire for depression; and the Problem Areas in Diabetes scale for diabetes distress. A range of factors related to demographic, diagnostic profile, lifestyle, social support and treatment of diabetes were also identified for case-mix adjustment. CONCLUSIONS: We recommend the standard set identified in this study for use in routine practice to monitor, benchmark and improve diabetes care. The inclusion of patient-reported outcomes enables people living with diabetes to report directly on their condition in a structured way.
AIMS: To select a core list of standard outcomes for diabetes to be routinely applied internationally, including patient-reported outcomes. METHODS: We conducted a structured systematic review of outcome measures, focusing on adults with either type 1 or type 2 diabetes. This process was followed by a consensus-driven modified Delphi panel, including a multidisciplinary group of academics, health professionals and people with diabetes. External feedback to validate the set of outcome measures was sought from people with diabetes and health professionals. RESULTS: The panel identified an essential set of clinical outcomes related to diabetes control, acute events, chronic complications, health service utilisation, and survival that can be measured using routine administrative data and/or clinical records. Three instruments were recommended for annual measurement of patient-reported outcome measures: the WHO Well-Being Index for psychological well-being; the depression module of the Patient Health Questionnaire for depression; and the Problem Areas in Diabetes scale for diabetes distress. A range of factors related to demographic, diagnostic profile, lifestyle, social support and treatment of diabetes were also identified for case-mix adjustment. CONCLUSIONS: We recommend the standard set identified in this study for use in routine practice to monitor, benchmark and improve diabetes care. The inclusion of patient-reported outcomes enables people living with diabetes to report directly on their condition in a structured way.
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