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Rare Autoimmune Self-Management (RAISE) programme development: A national survey to determine support needs of people with rare autoimmune rheumatic diseases in the United Kingdom

Type: conference-paper

Abstract: BackgroundThe rare autoimmune rheumatic diseases (RAIRDs) include systemic lupus erythematosus, vasculitis, scleroderma, myositis and Sjogren’s Disease. These multisystem diseases can be life- and organ-threatening and impact health-related quality of life (HRQoL). Our previous qualitative studies in the UK (total n=65 participants) have explored a range of impacts of having RAIRDs on HRQoL and identified potential common support needs [1]. An overarching theme highlighted the challenges of navigating the patient journey with RAIRDs, particularly as symptoms can be widespread and invisible but have a significant impact on work, family and social wellbeing. Patients also reported a lack of specialised information and healthcare professional knowledge due to the rarity of the conditions. Support for dealing with these issues, including adapting to having a chronic disease was lacking.ObjectivesTo identify patient preferences for content and structure of a self-management and psychological support intervention for people with RAIRDs.

Source: UWE Research Repository (UWE Bristol)

Authors: Janjua, S, Ndosi, M, Pearce, F, Dures, E, Berry, A, Orme, J, Anastasa, Z, Tremarius, D, Hunt, A, Berrou, I, Griffiths, M, Boughan, S, Yusof, M Y Md, Robson, J C

Institutions: University of the West of England, University of Nottingham, Vasculitis UK, LUPUS UK, Bristol Royal Infirmary, Leeds Teaching Hospitals NHS Trust, University of Leeds

Language: English

Topic: Systemic Lupus Erythematosus Research

Subfield: Rheumatology

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: green

OpenAlex ID: W7204423325

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