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Patient involvement in the development of patient‐reported outcome measures: a scoping review

Health expectations : an international journal of public participation in health care and health policy, 2017-02, Vol.20 (1), p.11-23 [Peer Reviewed Journal]

2016 The Authors. Published by John Wiley & Sons Ltd. ;2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd. ;COPYRIGHT 2016 John Wiley & Sons, Inc. ;Copyright © 2017 John Wiley & Sons Ltd ;2017. This work is published under http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License. ;ISSN: 1369-6513 ;EISSN: 1369-7625 ;DOI: 10.1111/hex.12442 ;PMID: 26889874

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Title:
Patient involvement in the development of patient‐reported outcome measures: a scoping review
Author: Wiering, Bianca ; Boer, Dolf ; Delnoij, Diana
Subjects: Chronic Disease ; Chronic diseases ; Chronic fatigue syndrome ; Chronic illnesses ; Clinical outcomes ; Development studies ; Empowerment ; Focus groups ; Health care policy ; Health status ; Holistic medicine ; Humans ; Medical personnel ; Medical research ; Medicine, Experimental ; Patient outcomes ; Patient participation ; Patient Participation - methods ; Patient Participation - statistics & numerical data ; Patient Reported Outcome Measures ; Patient satisfaction ; Patient-centered care ; Patients ; Quality of Life ; questionnaire development procedures ; Questionnaires ; Researchers ; Review ; scoping review ; Surveys and Questionnaires
Is Part Of: Health expectations : an international journal of public participation in health care and health policy, 2017-02, Vol.20 (1), p.11-23
Description: Background Patient‐reported outcome measures (PROMs) measure patients’ perspectives on health outcomes and are increasingly used in health care. To capture the patient's perspective, it is essential that patients are involved in PROM development Objective This article reviews in what ways and to what extent patients are involved in PROM development and whether patient involvement has increased over time. Search strategy Literature was searched in PubMed, EMBASE, MEDLINE and the Cochrane Methodology Register. Inclusion criteria Studies were included if they described a new PROM development. Data extraction Basic information and information regarding patient involvement in development phases was recorded. Main results A total of 189 studies, describing the development of 193 PROMs, were included. Most PROMs were meant for chronic disease patients (n = 59) and measured quality of life (n = 28). In 25.9% of the PROM development studies, no patients were involved. Patients were mostly involved during item development (58.5%), closely followed by testing for comprehensibility (50.8%), while patient involvement in determining which outcome to measure was minimal (10.9%). Some patient involvement took place in the development of most PROMs, but in only 6.7% patients were involved in all aspects of the development. Patient involvement did not increase with time. Conclusions Although patient involvement in PROM development is essential to develop valid patient‐centred PROMs, patients are not always involved. When patients are involved, their level of involvement varies considerably. These variations suggest that further attention to building and/or disseminating consensus on requirements for patient involvement in PROM development is necessary.
Publisher: England: John Wiley & Sons, Inc
Language: English
Identifier: ISSN: 1369-6513
EISSN: 1369-7625
DOI: 10.1111/hex.12442
PMID: 26889874
Source: Journals@Ovid Open Access Journal Collection Rolling
MEDLINE
PubMed Central
Wiley Online Library Open Access
ProQuest Central
DOAJ Directory of Open Access Journals

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Patient involvement in the development of patient‐reported outcome measures: a scoping review

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