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 modi?ed 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 pro?le, lifestyle, social support and treatment of diabetes were also identi?ed for case-mix adjustment.
Conclusions We recommend the standard set identi?ed 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.
J. Nano, F. Carinci, O. Okunade, S. Whittaker, M. Walbaum, K. Barnard-Kelly,D. Barthelmes, T. Benson, R. Calderon-Margalit, J. Dennaoui, S. Fraser, R. Haig, S. Hernandez-Jimenez, N. Levitt, J. C. Mbanya, S. Naqvi, A. L. Peters, M. Peyrot, M. Prabhaharan, A. Pumerantz, J. Raposo, M. Santana, A. Schmitt, S. E. Skovlund, A. C. Garcia-Ulloa, H.-L. Wee, J. Zaletel and M. Massi-Benedetti on behalf of the Diabetes Working Group of the International Consortium for Health Outcomes Measurement (ICHOM)
Disease Category: Endocrine & metabolic
Disease Name: Type 1 Diabetes, Type 2 Diabetes
Age Range: 18 - 100
Sex: Either
Nature of Intervention: Drug, Nonpharmacological
- Clinical experts
- Consumers (patients)
- Epidemiologists
- Researchers
- COS for practice
- Recommendations for outcome measures (measurement/how)
- Delphi process
- Semi structured discussion
- Systematic review