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

Autor: Terwee CB; Amsterdam UMC, Department of Epidemiology and Data Science, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands. cb.terwee@amsterdamumc.nl.; Amsterdam Public Health Research Institute, Methodology, Amsterdam, the Netherlands. cb.terwee@amsterdamumc.nl., Elders PJM; Amsterdam Public Health Research Institute, Methodology, Amsterdam, the Netherlands.; Amsterdam UMC, Department of General Practice, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands., Blom MT; Amsterdam Public Health Research Institute, Methodology, Amsterdam, the Netherlands., Beulens JW; Amsterdam UMC, Department of Epidemiology and Data Science, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands., Rolandsson O; Department of Public Health and Clinical Medicine, Family Medicine, Umeå University, Umeå, Sweden., Rogge AA; Center for Patient-Centered Outcomes Research, Department of Psychosomatic Medicine, Charité - Universitätsmedizin Berlin, Berlin, Germany., Rose M; Center for Patient-Centered Outcomes Research, Department of Psychosomatic Medicine, Charité - Universitätsmedizin Berlin, Berlin, Germany., Harman N; Department of Health Data Science, University of Liverpool, Liverpool, UK., Williamson PR; Department of Health Data Science, University of Liverpool, Liverpool, UK., Pouwer F; Steno Diabetes Center Odense, Odense, Denmark.; Department of Psychology, University of Southern Denmark, Odense, Denmark.; Amsterdam UMC, Department of Medical Psychology, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands., Mokkink LB; Amsterdam UMC, Department of Epidemiology and Data Science, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands.; Amsterdam Public Health Research Institute, Methodology, Amsterdam, the Netherlands., Rutters F; Amsterdam UMC, Department of Epidemiology and Data Science, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands.
Jazyk: angličtina
Zdroj: Diabetologia [Diabetologia] 2023 Aug; Vol. 66 (8), pp. 1357-1377. Date of Electronic Publication: 2023 May 24.
DOI: 10.1007/s00125-023-05926-3
Abstrakt: 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 been sufficiently validated, although the Diabetes Symptom Self-Care Inventory (DSSCI) for measuring diabetes-specific symptoms and the Diabetes Distress Scale (DDS) and Problem Areas in Diabetes (PAID) for measuring distress showed sufficient content validity. Standardisation and use of relevant PROs and psychometrically sound PROMs can help inform people with diabetes about the expected course of disease and treatment, for shared decision making, to monitor outcomes and to improve healthcare. We recommend further validation studies of diabetes-specific PROMs that have sufficient content validity for measuring disease-specific symptoms and consider generic item banks developed based on item response theory for measuring commonly relevant PROs.
(© 2023. The Author(s).)
Databáze: MEDLINE
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