ArticleHealth expectations : an international journal of public participation in health care and health policy2022
Reconciling validity and challenges of patient comfort and understanding: Guidelines to patient-oriented questionnaires.
Article in Health expectations : an international journal of public participation in health care and health policy, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
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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
8 citing papers in PubMed.
- Validation of a Patient-Created, Patient-Reported Experience Measure for Inflammatory Bowel Disease in the United Kingdom.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Improving Collaborative Engagement in Health State Valuation: A Scoping Review of Current Practices and Emerging Recommendations.PharmacoEconomics · 2026Review
- The CONECT-6 case-finding tool to identify patients with complex needs: A few tips to promote understanding.Journal of evaluation in clinical practice · 2025Article
- A Systematic Review of Research on Guided Access Cavity Preparation Endodontic Treatment: Dentin Preservation Perspectives.Clinical, cosmetic and investigational dentistry · 2025Review
- Article
- Reconciling validity and challenges of patient comfort and understanding: Guidelines to patient-oriented questionnaires.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Disrupting patterns of exclusion in participatory spaces: Involving people from vulnerable populations.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Patient and researcher experiences of patient engagement in primary care health care research: A participatory qualitative study.Health expectations : an international journal of public participation in health care and health policy · 2022Article
Corrections and comments
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Authors and funding
14 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient-reported outcome measures (PROMs) are widely recognized as important tools for achieving a patient-centred approach in health research. While PROMs are subject to several stages of validation during development, even questionnaires with robust psychometric properties may challenge patient comfort and understanding.
aimBuilding on the experience of patient engagement in the PriCARE research programme, this paper outlines the team's response to concerns raised by patient partners regarding the administration of the questionnaire.
methodsBased on a participatory action research design and the patient engagement framework in the Strategy for Patient-Oriented Research of the Canadian Institutes of Health Research, PriCARE team members worked together to discuss concerns, review the questionnaires and come up with solutions. Data were collected through participant observation of team meetings.
resultsThis paper demonstrates how patient partners were engaged in PriCARE and integrated into the programme's governance structure, focusing on the challenges that they raised regarding the questionnaires and how these were addressed by PriCARE team members in a six-step approach: (1) Recognizing patient partner concerns, discussing concerns and reframing the challenges; (2) Detailing and sharing evidence of the validity of the questionnaires; (3) Evaluating potential solutions; (4) Searching the literature for guidelines; (5) Creating guidelines; and (6) Sharing and refining guidelines.
conclusionThis six-step approach demonstrates how research teams can integrate patient partners as equal members, develop meaningful collaboration through recognition of individual experiences and expertise and ensure that the patient perspective is taken into consideration in research and healthcare innovation. PATIENT OR PUBLIC CONTRIBUTION: All patient partners from the PriCARE programme were actively involved in the six-step approach. They were also involved in the preparation of the manuscript.
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What Socratic holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.