P106 Psychological and self-management support for people with systemic vasculitis or CTDs: a mixed methods study of health professionals' perception of provision in Rheumatology and Nephrology departments in the UK. (20th April 2020)

• Record Type: Journal Article
• Authors: Robson, Joanna C; Shepherd, Michael; Ndosi, Mwidimi; Harper, Lorraine; Flurey, Caroline; Logan, Sarah; Austin, Kez; Dures, Emma
• Is Part Of: Rheumatology. Volume 59(2020)Supplement 2
• Publication Date: 2020-04-20
• Subjects: Rheumatism -- Periodicals; Rheumatology -- Periodicals; 616.723005
• DOI: 10.1093/rheumatology/keaa111.104
• Languages: English
• ISSNs: 1462-0324

Abstract

Abstract: Background: People with a connective tissue disease (CTD) or systemic vasculititis have diseases which can be life and organ threatening, require complicated medication regimens and impact on all aspects of health-related quality of life. People are routinely managed across multiple medical specialities and have to navigate their way through complex health care systems. The aim of this study was to investigate current psychological and self-management support available for people with CTDs and vasculitis in rheumatology and nephrology departments in the UK. Methods: An online survey of health professionals in rheumatology and nephrology departments was conducted with follow-up interviews. The survey comprised 45 multiple-choice and free-text questions. Quantitative material was analysed descriptively. Follow-up interviews were recorded, transcribed and analysed thematically, together with free-text survey responses, to identify health professionals' perceptions on unmet needs and key improvements required. Results: The online survey included 120 health professional respondents (34 % specialist nurses, 51% doctors and 12 % allied health professionals and pharmacists). Respondents worked primarily in rheumatology (52.9%) and nephrology (21.5%). Access to self-management programmes or clinics for people with CTD and vasculitis was available in 23% of rheumatology and 8% of nephrology departments. In response to the question "How well is your team providing self-management support to people with CTD and vasculitis?", 38% of respondents reported not very well, or not well at all. Direct access to psychological support (either within their department or within the hospital) was available for patients in 76.9% of nephrology and 32.8% of rheumatology departments. Where psychological referrals were direct, the assessment of the quality of the service by health professionals was higher than when the referrals were indirect (i.e when patients were either referred to primary care or asked to self-refer) (X 2 =13.83, p < 0.001). Over 80% of health-professional respondents reported they would like additional training in providing self-management support. Key themes from the qualitative data included the need for dedicated psychological support within departments, self-management programmes (specifically for people with CTD and vasculitis or opening up established programmes for people with other conditions), the benefits of a whole team approach (specialist teams not individual clinicians working to empower patients to take a lead in managing their own care), individual staff training needs ( training in brief psychological interventions and support for health professionals to set up self-management programmes) and signposting to additional resources for patients and their families ( disease-specific written and online information and support from patient charities). Conclusion: People with CTD and vasculitis have complex needs and systemic improvements in support are required. Patients in nephrology departments are more likely to have access to psychological support than those in rheumatology. There is inadequate access to structured self-management programmes in both nephrology and rheumatology. Disclosures: J.C. Robson None. M. Shepherd None. M. Ndosi None. L. Harper None. C. Flurey None. S. Logan None. K. Austin None. E. Dures None.