ArticleRMD open2015
Patient participation as an integral part of patient-reported outcomes development ensures the representation of the patient voice: a case study from the field of rheumatology.
Article in RMD open, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 40 papers, 1 of them a synthesis that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
40 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Summarizing current refractory disease definitions in rheumatoid arthritis and polyarticular juvenile idiopathic arthritis: systematic review.Rheumatology (Oxford, England) · 2021Pooled it
- Effect of bimekizumab on patient-reported disease impact in patients with psoriatic arthritis: 1-year results from two phase 3 studies.Rheumatology (Oxford, England) · 2024Trial
- Effect of filgotinib on health-related quality of life in active psoriatic arthritis: a randomized phase 2 trial (EQUATOR).Rheumatology (Oxford, England) · 2020Trial
- Perspectives of consumer involvement in pre-clinical musculoskeletal research: a cross-sectional survey of consumers and community members.Rheumatology advances in practice · 2026Article
- EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 update.Annals of the rheumatic diseases · 2024Article
- Leveraging Patients' Creative Ideas for Innovation in Health Care.The Milbank quarterly · 2024Article
- Article
- From Innovator Result-driven to Multi-actor Impact-oriented Public-Private Partnerships: Integrating the Patient Perspective.Handbook of experimental pharmacology · 2024Review
- The value of co-creating a clinical outcome assessment strategy for clinical trial research: process and lessons learnt.Research involvement and engagement · 2023Article
- Article
- Patient Power and Empowerment: Mitigating Elements of Valuable Patient Participation in Healthcare Collaboratives.Behavioral sciences (Basel, Switzerland) · 2023Article
- Development and early qualitative evidence of two novel patient-reported outcome instruments to assess daily functioning in people with early-stage Parkinson's.Journal of patient-reported outcomes · 2023Article
- Patient and public involvement in research: a review of practical resources for young investigators.BMC rheumatology · 2023Review
- Matching researchers' needs and patients' contributions: practical tips for meaningful patient engagement from the field of rheumatology.Annals of the rheumatic diseases · 2023Article
- A rapid realist review of patient engagement in patient-oriented research and health care system impacts: part one.Research involvement and engagement · 2021Review
- Adolescent and young adult patients as co-researchers: A scoping review.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- Patient-reported outcomes and patient-reported outcome measures in interstitial lung disease: where to go from here?European respiratory review : an official journal of the European Respiratory Society · 2021Review
- Ethical considerations for engaging frail and seriously ill patients as partners in research: sub-analysis of a systematic review.Research involvement and engagement · 2021Review
- Patient engagement in health technology assessment (HTA) and the regulatory process: what about rheumatology?RMD open · 2020Article
- Feasibility of Collecting Multiple Patient-Reported Outcome Measures Alongside the Dutch Arthroplasty Register.Journal of patient experience · 2020Article
Corrections and comments
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionPatient-reported outcomes (PROs) are important instruments to evaluate healthcare interventions, both in clinical practice and clinical research.
objectiveTo describe how representation of the perspective of people with psoriatic arthritis was obtained through active participation on different levels in the development of PROs.
methodsThis case study focuses on the methods of involving patients in the elaboration and validation of the Psoriatic Arthritis Impact of Disease (PsAID) score. We used the concept of the participation ladder and the European League Against Rheumatism (EULAR) recommendations for the involvement of patient representatives in scientific projects to analyse the variety of ways patients participated in this process.
resultsTwo patient experts were part of the steering group. 12 patient research partners, coming from 12 different European countries, participated in identifying domains, formulating items for the questionnaire and determining the number of items, the recall period and the questionnaire format. They also helped with the translation of the items into different European languages. Then, 139 patients took part in ranking and prioritising the domains for importance; 65 patients were involved in cognitive debriefing interviews; 499 new patients were recruited for the validation study. Challenges of patient participation in PRO development, such as the representation of patients, are discussed.
conclusionsMaking patient participation an integral part of the PRO development and validation process is an important requisite for outcome research. The variety of patient contributions at different phases in this case study resulted in an instrument with high face validity.
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