The use of routinely collected patient-reported outcome measures in rheumatoid arthritis

Mickaël Hiligsmann; Susanne Rademacher; K Julia Kaal; Nick Bansback; Mark Harrison

doi:10.1016/j.semarthrit.2018.03.006

The use of routinely collected patient-reported outcome measures in rheumatoid arthritis

Semin Arthritis Rheum. 2018 Dec;48(3):357-366. doi: 10.1016/j.semarthrit.2018.03.006. Epub 2018 Mar 15.

Authors

Mickaël Hiligsmann¹, Susanne Rademacher², K Julia Kaal³, Nick Bansback⁴, Mark Harrison⁵

Affiliations

¹ Department of Health Services Research, Care and Public Health Research Institute, Maastricht University, PO Box 616, 6200 MD Maastricht, The Netherlands.
² Department of Health Services Research, Maastricht University, PO Box 616, 6200 MD Maastricht, The Netherlands.
³ School of Population and Public Health, University of British Columbia, 2206 East Mall, Vancouver, BC V6T 1Z3, Canada; Pharmaceutical Sciences, University of British Columbia, 2405 Wesbrook Mall, Vancouver, BC V6T 1Z3, Canada.
⁴ School of Population and Public Health, University of British Columbia, 2206 East Mall, Vancouver, BC V6T 1Z3, Canada; Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital, 1081 Burrard Street, Vancouver, BC V6Z 1Y6, Canada.
⁵ Pharmaceutical Sciences, University of British Columbia, 2405 Wesbrook Mall, Vancouver, BC V6T 1Z3, Canada; Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital, 1081 Burrard Street, Vancouver, BC V6Z 1Y6, Canada. Electronic address: mark.harrison@ubc.ca.

PMID: 29709290
DOI: 10.1016/j.semarthrit.2018.03.006

Abstract

This study systematically reviewed commonly used patient-reported outcome measures (PROMs) for rheumatoid arthritis (RA), routinely collected in clinical practice, and evaluated objectives of their use. An additional survey conducted among identified RA registries provided additional information about collection of PROMs. Medline Ovid and Embase were searched for observational studies using data of RA registries/cohorts, published between 2011 and 2016. The search combined a validated search algorithm for PROMs and RA. Study characteristics, objective, registry, country, type of PROMs collected, and time interval of collection were systematically recorded. The survey asked about PROMs collected by the registries, timing, response rates, and barriers to collection. Ninety-eight articles from 15 countries were identified making use of 37 registries and large cohorts. Thirty-three PROMs were collected routinely, with VAS, EQ-5d and HAQ being the most used tools. Health domains reported the most were functional assessment, pain and patient global assessment. Despite the wide variety of collected PROMs, foci of the articles were similar and reported results narrow. This review suggests rethinking the role of PROMs in rheumatology research to use this information as broadly as possible, including evaluation of treatments, economic analyses, and decision-making based on patients' experiences at system, provider, and physician level.

Keywords: Patient-reported outcome measures; Rheumatoid arthritis; Routine collection; Scoping review.

Publication types

Review

MeSH terms

Antirheumatic Agents / therapeutic use*
Arthritis, Rheumatoid / diagnosis*
Arthritis, Rheumatoid / drug therapy*
Clinical Decision-Making
Humans
Patient Reported Outcome Measures*
Treatment Outcome

Substances

Antirheumatic Agents