Psychological and self-management support for people with vasculitis or connective tissue diseases: UK health professionals' perspectives. Issue 2 (27th May 2020)

• Record Type: Journal Article
• Authors: Robson, Joanna C; Shepherd, Michael; Harper, Lorraine; Ndosi, Mwidimi; Austin, Keziah; Flurey, Caroline; Logan, Sarah; Dures, Emma
• Is Part Of: Rheumatology advances in practice. Volume 4:Issue 2(2020)
• Publication Date: 2020-05-27
• Subjects: self-management -- psychological -- lupus -- vasculitis -- myositis -- rheumatology -- nephrology -- health professionals -- education; Rheumatology -- Periodicals; Rheumatology; Rheumatic Diseases; Rheumatology; Periodicals; Electronic journals; Periodical; 616.723005
• DOI: 10.1093/rap/rkaa016
• Languages: English
• ISSNs: 2514-1775

Abstract

Abstract: 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 free-text 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 self-management and psychological support are required in UK rheumatology and nephrology departments.