Young people's perspectives on patient-reported outcome measures in inflammatory arthritis: results of a multicentre European qualitative study from a EULAR task force.
Erika Mosor,Paul Studenic,Alessia Alunno,Ivan Padjen,W. Olsder,Sofia Ramiro,Ilaria Bini,N Caeyers,Laure Gossec,Marios Kouloumas,Elena Nikiphorou,Simon Stones,Tanita Christina Wilhelmer,Tanja Stamm +13 more
TLDR
In this article, a multinational qualitative study was conducted in Austria, Croatia, Italy and the Netherlands to explore whether patient-reported outcome measures (PROMs) adequately cover the perspective of young people with inflammatory arthritis from different European countries.Abstract:
Introduction Although patient-reported outcome measures (PROMs) are increasingly used in clinical practice and research, it is unclear whether these instruments cover the perspective of young people with inflammatory arthritis (IA). The aims of this study were to explore whether PROMs commonly used in IA adequately cover the perspective of young people from different European countries. Methods A multinational qualitative study was conducted in Austria, Croatia, Italy and the Netherlands. Young people with either rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), Still’s disease, psoriatic arthritis (PsA) or spondyloarthritis (SpA), aged 18–35 years, participated in semistructured focus group interviews. Thematic analysis was used and data saturation was defined as no new emergent concepts in at least three subsequent focus groups. Results Fifty-three patients (21 with RA/JIA/Still’s, 17 with PsA, 15 with SpA; 72% women) participated in 12 focus groups. Participants expressed a general positive attitude towards PROMs and emphasised their importance in clinical practice. In addition, 48 lower level concepts were extracted and summarised into 6 higher level concepts describing potential issues for improvement. These included: need for lay-term information regarding the purpose of using PROMs; updates of certain outdated items and using digital technology for data acquisition. Some participants admitted their tendency to rate pain, fatigue or disease activity differently from what they actually felt for various reasons. Conclusions Despite their general positive attitude, young people with IA suggested areas for PROM development to ensure that important concepts are included, making PROMs relevant over the entire course of a chronic disease.read more
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References
More filters
Journal ArticleDOI
The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection.
John E. Ware,Cathy D. Sherbourne +1 more
TL;DR: A 36-item short-form survey designed for use in clinical practice and research, health policy evaluations, and general population surveys to survey health status in the Medical Outcomes Study is constructed.
Journal ArticleDOI
Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups
Allison Tong,Allison Tong,Peter Sainsbury,Peter Sainsbury,Jonathan C. Craig,Jonathan C. Craig +5 more
TL;DR: The criteria included in COREQ, a 32-item checklist, can help researchers to report important aspects of the research team, study methods, context of the study, findings, analysis and interpretations.
Journal Article
InterViews: An introduction to qualitative research interviewing.
TL;DR: In this paper, the authors introduce the concept of the research interview as a conversation and discuss the social construction of validity of the interview report and the ethical issues in conducting research interviews.
Book ChapterDOI
World Medical Association Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects
TL;DR: Comparing the socialist nature of many European counties, there is a requirement that provision be made for patients to be made whole regardless of the outcomes of the trial or if they happened to have been randomized to a control group that did not enjoy the benefits of a successful experimental intervention.
Journal ArticleDOI
Analysing qualitative data
TL;DR: Qualitative research produces large amounts of textual data in the form of transcripts and observational fieldnotes, and the systematic and rigorous preparation and analysis of these data is time consuming and labour intensive.
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