Patient-reported outcomes for people with diabetes: what and how to measure? A narrative review

作者：Caroline B. Terwee, Petra J. M. Elders, Marieke T. Blom, Joline W. J. Beulens, Olaf Rolandsson, Alizé A. Rogge, Matthias Rose, Nicola Harman, Paula Williamson, Frans Pouwer, Lidwine B. Mokkink, Femke Rutters · 发表于：Diabetologia · 年份：2023 · DOI：10.1007/s00125-023-05926-3 · 被引用次数：48 · 研究领域：Chronic Disease Management Strategies、Diabetes Management and Education、Health Systems, Economic Evaluations, Quality of Life

Patient-reported outcomes (PROs) are valuable for shared decision making and research. Patient-reported outcome measures (PROMs) are questionnaires used to measure PROs, such as health-related quality of life (HRQL). Although core outcome sets for trials and clinical practice have been developed separately, they, as well as other initiatives, recommend different PROs and PROMs. In research and clinical practice, different PROMs are used (some generic, some disease-specific), which measure many different things. This is a threat to the validity of research and clinical findings in the field of diabetes. In this narrative review, we aim to provide recommendations for the selection of relevant PROs and psychometrically sound PROMs for people with diabetes for use in clinical practice and research. Based on a general conceptual framework of PROs, we suggest that relevant PROs to measure in people with diabetes are: disease-specific symptoms (e.g. worries about hypoglycaemia and diabetes distress), general symptoms (e.g. fatigue and depression), functional status, general health perceptions and overall quality of life. Generic PROMs such as the 36-Item Short Form Health Survey (SF-36), WHO Disability Assessment Schedule (WHODAS 2.0), or Patient-Reported Outcomes Measurement Information System (PROMIS) measures could be considered to measure commonly relevant PROs, supplemented with disease-specific PROMs where needed. However, none of the existing diabetes-specific PROM scales has...