Challenges to optimal rheumatology care: a patient-centered focus group study
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ORIGINAL ARTICLE
Challenges to optimal rheumatology care: a patient-centered focus group study J. Dollinger 1 & C. Neville 1 & C. A. Pineau 2 & E. Vinet 1,2 & E. Hazel 2 & J. L. F. Lee 1 & S. Bernatsky 1,2 Received: 30 December 2019 / Revised: 30 December 2019 / Accepted: 8 April 2020 # International League of Associations for Rheumatology (ILAR) 2020
Abstract Objective To assess challenges to optimal rheumatology care from the perspective of patients served by our institution’s rheumatology division. Design setting and participants Focus group study of adult rheumatic disease patients who attend clinics at a university teaching hospital in Montreal, Canada. Interventions Individuals participated in 1-h focus group discussions concerning their experiences and beliefs regarding rheumatology care. Sessions were recorded and transcripts generated. A thematic analysis approach was used by two individual analyzers. Main outcome measures and results Eighteen patients participated in three focus groups (group one = 8 patients; group two = 5; group three = 5). Eleven patients had systemic lupus erythematosus, 6 had rheumatoid arthritis, and 1 patient had psoriatic arthritis. The average age (standard deviation) was 51.2 (14.0) years, disease duration 23.5 (14.5) years, and in the majority had at least a high school education. All participants were female and 72.2% were Caucasian. Three main themes emerged: theme 1 identified patients’ needs for information and support, at diagnosis and throughout the disease trajectory; theme 2 identified barriers to accessing health care: theme 3 identified patients’ beliefs regarding improvements needed to optimize their experiences throughout the disease course. Conclusions Our focus group study not only clarified the needs of rheumatology patients with chronic inflammatory disease, and identified barriers to optimal rheumatology care, but also was a source of recommendations that might improve patient experiences in seeking health care in a rheumatology setting. Limitations include the fact that our participants were all female, and mostly were middle aged, Caucasian and well educated. Regardless, the findings can help inform efforts to improve rheumatology care. Key Points • Our focus group study clarified the needs of chronic inflammatory rheumatic disease, and identified barriers to optimal rheumatology care. • Despite some potential limitations, our work provides recommendations that could improve patient experiences when seeking health care in a rheumatology setting.
Keywords Focus group . Inflammatory arthritis . Optimal care . Rheumatology
Introduction
* S. Bernatsky [email protected] 1
Centre for Outcome Research and Evaluation, Research Institute of the McGill University Health Centre, 5252 boul. de Maisonneuve Ouest, (3F.51), Montreal, QC H4A 3S5, Canada
2
Division of Rheumatology, McGill University Health Centre, Montreal, QC, Canada
Rheumatoid arthritis (RA), psoriatic arthritis (PsA), and systemic lupus erythematosus (SLE) are examples of chronic inflammat
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