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

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

doi:10.1093/rap/rkaa016

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

Rheumatol Adv Pract. 2020 May 27;4(2):rkaa016. doi: 10.1093/rap/rkaa016. eCollection 2020.

Authors

Joanna C Robson^{1

2}, Michael Shepherd^{1

2}, Lorraine Harper^{3

4}, Mwidimi Ndosi^{1

2}, Keziah Austin^{1

2}, Caroline Flurey⁵, Sarah Logan⁴, Emma Dures^{1

2}

Affiliations

¹ Department of Nursing and Midwifery, Faculty of Health and Applied Science, University of the West of England.
² Rheumatology Research, Rheumatology Department, University Hospitals Bristol NHS Foundation Trust, Bristol.
³ Institute of Clinical Sciences, College of Medical and Dental Sciences, University of Birmingham.
⁴ Nephrology Department, University Hospital Birmingham NHS Foundation Trust, Birmingham.
⁵ Department of Health and Social Sciences, Faculty of Health and Applied Science, University of the West of England, Bristol, UK.

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.

Keywords: education; health professionals; lupus; myositis; nephrology; psychological; rheumatology; self-management; vasculitis.