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Psychological and self-management support for people with vasculitis or connective tissue diseases: UK health professionals' perspectives

Austin, Keziah; Robson, Joanna C.; Shepherd, Michael; Harper, Lorraine; Ndosi, Mwidimi; Flurey, Caroline; Logan, Sarah; Dures, Emma

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Authors

Keziah Austin

Jo Robson Jo.Robson@uwe.ac.uk
Consultant SL in Rheumatology

Michael Shepherd

Lorraine Harper

Sarah Logan

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



Contributors

Michael Shepherd
Researcher

Lorraine Harper
Researcher

Sarah Logan
Researcher

Abstract

© The Author(s) 2020. Objectives. CTD and systemic vasculitis impact on health-related quality of life. Treatment can be complex, involving multiple medical specialities. The aim of this study was to investigate psychological and self-management support for patients in secondary care. Methods. An online survey of health professionals in the UK, including 45 multiple-choice and freetext questions, was analysed descriptively. Free-text survey responses were analysed thematically to identify health professionals' perceptions of best practice and unmet needs. Results. The online survey included 120 health professionals (34% specialist nurses, 51% doctors and 12% allied health professionals), predominantly working in rheumatology (52.9%) and nephrology (21.5%) departments. Access to self-management programmes or clinics for people with CTD or vasculitis was available in 23% of rheumatology and 8% of nephrology departments. In response to 'How well is your team providing self-management support to people with CTD or vasculitis?', 38% of respondents reported 'not very well' or 'not well at all'. Direct access to psychological support was available in 76.9% of nephrology and 32.8% of rheumatology departments. More than 80% of respondents would like additional training. Key themes from the qualitative data (free-text survey responses) included the importance of: Dedicated psychological support and self-management programmes for people with CTD and vasculitis, a whole-team approach (specialist teams empowering people to manage their own care), staff training (e.g. brief psychological interventions) and signposting to resources, including patient charities. Conclusion. People with CTD and vasculitis have complex needs, and improvements in selfmanagement and psychological support are required in UK rheumatology and nephrology departments.

Citation

Austin, K., Robson, J. C., Shepherd, M., Harper, L., Ndosi, M., Flurey, C., …Dures, E. (2020). Psychological and self-management support for people with vasculitis or connective tissue diseases: UK health professionals' perspectives. Rheumatology Advances in Practice, 4(2), https://doi.org/10.1093/rap/rkaa016

Journal Article Type Article
Acceptance Date Apr 28, 2020
Online Publication Date May 27, 2020
Publication Date 2020
Deposit Date May 15, 2020
Publicly Available Date Sep 25, 2020
Journal Rheumatology Advances in Practice
Print ISSN 2514-1775
Electronic ISSN 2514-1775
Publisher Oxford University Press
Peer Reviewed Peer Reviewed
Volume 4
Issue 2
Article Number rkaa016
DOI https://doi.org/10.1093/rap/rkaa016
Public URL https://uwe-repository.worktribe.com/output/5975224

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