Formal and Informal Social Care in People With Rheumatic and Musculoskeletal Diseases: A Cross-Sectional Multicenter Survey

Objective: Rheumatic and musculoskeletal diseases (RMDs) are leading causes of physical disability, necessitating support with activities of daily living. This study describes social care received by patients with RMDs in two disparate regions of England: Salford (urban) and Norfolk (rural). 

Methods: A cross-sectional survey identified how many patients received care and who provided it as well as care type (formal/informal), frequency, and duration. Participants included (1) patients attending rheumatology outpatient facilities at Salford Royal Hospital and (2) participants with inflammatory polyarthritis enrolled in the Norfolk Arthritis Register (NOAR). Descriptive statistics compared the care received, and a logistic regression model investigated factors associated with receiving help. 

Results: The Salford cohort was younger and had a wider range of RMDs compared with NOAR. A significant number of participants in the Salford (85%) and NOAR (38%) groups required help with daily activities. Of those needing help, 61% and 73% received care in Salford and NOAR, respectively, predominantly informally from family and friends. Local authorities delivered social care to just 0.5% of Salford and 1.4% of NOAR participants. Daily care was provided to 43% of Salford and 53% of NOAR participants. Weekly care duration varied: 21% of Salford and 31% of NOAR responders received ≤4 hours, and 19% of Salford and 10% of NOAR responders received >20 hours. Having multiple conditions increased the likelihood of receiving care: Salford odds ratio 1.93 (95% confidence interval [CI] 1.18–3.18) and NOAR odds ratio 3.30 (95% CI 1.45–7.60). 

Conclusion: The survey highlights a lack of formal care for patients with RMDs, who mostly rely on undocumented informal care. Patients with multiple conditions often require daily living assistance; rheumatology services should consider incorporating social care reviews as part of routine practice. (Figure presented.).