Patient-reported outcome measures in core outcome sets targeted overlapping domains but through different instruments

Ciani, Oriana, Salcher-Konrad, Maximilian, Meregaglia, Michela, Smith, Kathrine, Gorst, Sarah L ORCID: 0000-0002-7818-9646, Dodd, Susanna ORCID: 0000-0003-2851-3337, Williamson, Paula R ORCID: 0000-0001-9802-6636 and Fattore, Giovanni (2021) Patient-reported outcome measures in core outcome sets targeted overlapping domains but through different instruments. JOURNAL OF CLINICAL EPIDEMIOLOGY, 136. pp. 26-36.

Text
JCEPI-S-20-00421 (1).pdf - Author Accepted Manuscript
Download (1MB) | Preview

Official URL: http://dx.doi.org/10.1016/j.jclinepi.2021.03.003

Abstract

<h4>Objective</h4>There is no comprehensive assessment of which patient-reported outcomes (PROs) are recommended in core outcome sets (COS), and how they should be measured. The aims of this study are to review COS that include patient-reported outcomes measures (PROMs), identify their target health domains, main characteristics, and their overlap within and across different disease areas.<h4>Study design and setting</h4>We selected COS studies collected in a publicly available database that included at least one recommended PROM. We gathered information on study setting, disease area, and targeted outcome domains. Full-text of recommended instruments were obtained, and an analysis of their characteristics and content performed. We classified targeted domains according to a predefined 38-item taxonomy.<h4>Results</h4>Overall, we identified 94 COS studies that recommended 323 unique instruments, of which: 87% were included in only one COS; 77% were disease-specific; 1.5% preference-based; and 61% corresponded to a full questionnaire. Most of the instruments covered broad health-related constructs, such as global quality of life (25%), physical functioning (22%), emotional functioning and wellbeing (7%).<h4>Conclusion</h4>The wealth of recommended instruments observed even within disease areas does not fit with a vision of systematic, harmonized collection of PROM data in COS within and across disease areas.

Item Type:	Article
Uncontrolled Keywords:	Core outcome set, COS, Patient-reported outcome measure, PRO, PROM, Outcomes research
Divisions:	Faculty of Health and Life Sciences Faculty of Health and Life Sciences > Institute of Population Health
Depositing User:	Symplectic Admin
Date Deposited:	22 Feb 2022 11:01
Last Modified:	18 Jan 2023 21:11
DOI:	10.1016/j.jclinepi.2021.03.003
Related URLs:	Author Publisher
URI:	https://livrepository.liverpool.ac.uk/id/eprint/3149424