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

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.

• 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
• 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