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Patients’ Perspectives on the Psychological Impact of Inflammatory Arthritis and Meeting the Associated Support Needs: Open-Ended Responses in a Multi-Centre Survey

Fraser, Isobel; Peterson, Alice; Caesley, Judy; Ambler, Nicholas; Morris, Marianne; Dures, Emma; Hewlett, Sarah; Almeida, Celia; Pollock, Jon

Authors

Isobel Fraser

Alice Peterson

Judy Caesley

Nicholas Ambler

Marianne Morris

Emma Dures Emma2.Dures@uwe.ac.uk
Associate Professor in Rheumatology and Self-management

Jon Pollock Jon.Pollock@uwe.ac.uk
Associate Professor in Epidemiology



Abstract

Copyright © 2016 John Wiley & Sons, Ltd. Objectives: Psychological support for inflammatory arthritis is recommended in rheumatology treatment guidelines. Previous research found that high numbers of patients would access such support but that provision is often inconsistent and inadequate. The present study explored patients’ perspectives on the nature of the psychological impact of inflammatory arthritis and how to meet the associated support needs. Methods: A cross-sectional survey was conducted, using questionnaires which included three open-ended questions about helpful and unhelpful psychological support. The questionnaires were administered to 1,080 patients at six regional rheumatology units across England, and 1,200 members of a national patient charity. Results: A total of 1,210 (53%) patients completed the questionnaire, with 779 (64%) responding to the open-ended questions: 80% female; mean age 59 years (12.6); disease duration 10 years (40%). Data were analysed using a hybrid content analysis. Four categories emerged: challenges of an altered life course (negative emotions, isolation and loneliness, a dysfunctional body, loss, strained relationships, and fears for the future); poor communication (feeling unheard, clinicians’ reluctance to address psychological issues, a lack of help to manage pain and fatigue, and struggling to ask for help); understood by others (sharing with people who have arthritis, supportive family and friends, whole team support, and understanding from clinicians); and acquiring strategies (ways of coping). Conclusions: Psychological distress was commonplace, and often attributed to fatigue and pain. In addition to peers and family, patients looked to the rheumatology team for validation and support. Further research will address the skills training needs of rheumatology teams to meet patients’ psychological support requirements.

Journal Article Type Article
Publication Date Sep 1, 2017
Journal Musculoskeletal Care
Print ISSN 1478-2189
Electronic ISSN 1557-0681
Publisher Wiley
Peer Reviewed Peer Reviewed
Volume 15
Issue 3
Pages 175-185
APA6 Citation Morris, M., Ambler, N., Caesley, J., Peterson, A., Fraser, I., Dures, E., …Pollock, J. (2017). Patients’ Perspectives on the Psychological Impact of Inflammatory Arthritis and Meeting the Associated Support Needs: Open-Ended Responses in a Multi-Centre Survey. Musculoskeletal Care, 15(3), 175-185. https://doi.org/10.1002/msc.1159
DOI https://doi.org/10.1002/msc.1159
Keywords inflammatory arthritis, psychological support, patient perspective, fatigue, pain
Publisher URL http://dx.doi.org/10.1002/msc.1159

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