Patient Perspective: Choosing or Developing Instruments
Open accessAbstract
Previous Outcome Measures in Rheumatology (OMERACT) meetings recognized that patients view outcomes of intervention from a different perspective. This preconference position paper briefly sets out 2 patient-reported outcome (PRO) instrument approaches, the PROMISE computer adaptive testing (CAT) system and development of a rheumatoid arthritis-specific questionnaire to measure fatigue; a tentative proposal for a PRO instrument development pathway is also made.
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Patient involvement is not only recommended by many researchers, it has also become a requirement if the PROM is used in medical product development.
“This is especially surprising because patient involvement is not only recommended by many researchers,5, 6, 7, 8, 9 a few years ago it has also become a requirement if the PROM is used in medical product development.26”
From Patient involvement in the development of patient‐reported outcome measures: a scoping review (2017) · cites this paper as [8]
The Abstract (page not provided) says the FDA recently issued guidelines for choosing, developing, or justifying patient-reported outcome instruments. The section “A Methodological Proposal for Developing or Choosing Instruments (Questionnaires)” says questionnaire development should include consultation with patients, but the paper does not say patient involvement became a requirement for PROMs used in medical product development. (LLM, conf=0.82)
Experimental — accuracy not yet measuredTo capture the patient's perspective, it is essential that patients are involved in PROM development.
“To capture the patient's perspective, it is essential that patients are involved in PROM development”
From Patient involvement in the development of patient‐reported outcome measures: a scoping review (2017) · cites this paper as [8]
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Cites
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3 of the 27 references couldn’t be matched to a known paper.
Research works printed but not linked: 1
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- Authors
- KIRWAN, J. R., FRIES, J. F., HEWLETT, S., & OSBORNE, R. H.
- Affiliations
- Bristol Royal Infirmary (GB)
- Deakin University (AU)
- Venue
- The Journal of Rheumatology
- Publisher
- The Journal of Rheumatology
- Published
- 2011-08
- Volume
- 38
- Issue
- 8
- Pages
- 1716-1719
- ISSN
- 0315-162X (ISSN-L)
- 1499-2752
- OpenAlex
- W1982865546
- Cited by
- 34
- References
- 27
- Citations by year
- 2026: 2 · 2025: 2 · 2024: 3 · 2023: 1 · 2022: 6 · 2021: 3 · 2020: 3 · 2019: 1 · 2017: 6 · 2016: 1 · 2014: 2 · 2013: 2
- FWCI
- 2.61
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- The Journal of Rheumatology (publishedVersion)
- PubMed (publishedVersion)
- UWE Research Repository (UWE Bristol) (submittedVersion, cc-by)
- Explore Bristol Research (submittedVersion)
- Bristol Research (University of Bristol) (submittedVersion)
- Swinburne figshare (Swinburne University of Technology) (submittedVersion)
- Topics
- Social Sciences › Decision Sciences › Management Science and Operations Research › Psychometric Methodologies and Testing
- Health Sciences › Medicine › Rheumatology › Rheumatoid Arthritis Research and Therapies
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Keywords
- patient-reported outcome measures, rheumatoid arthritis, fatigue, promise, computerized adaptive testing, outcome measure development, patient perspectives, OMERACT, questionnaire development
- MeSH terms
- Arthritis, Rheumatoid, Congresses as Topic, Fatigue, Humans, Surveys and Questionnaires, Rheumatology, Treatment Outcome, Patient Satisfaction, Outcome Assessment, Health Care
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