Caregiver Perspectives on the Burden of Disease and Treatment in Uncontrolled Gout

OBJECTIVE: Uncontrolled gout (UG) refers to persistently elevated serum urate (SU) levels >6 mg/dL and ongoing gout symptoms despite use of urate-lowering therapy (ULT). The objective of this study was to evaluate the burden associated with informal caregiving for individuals with UG. METHODS: To inform survey development, concept elicitation (CE) interviews were conducted with informal caregivers of patients with UG between April and May 2024. A separate cohort of informal caregivers, meeting the same eligibility criteria, was recruited via physician panels to complete a web-based, cross-sectional survey between January and February 2025. Survey outcomes included caregiver health-related quality of life (HRQOL), productivity, and 12-month patient healthcare resource utilization. RESULTS: Four caregivers participated in CE interviews, which informed survey development. Separately, 40 caregivers completed the survey. Survey respondents were predominantly female (73%) with a mean (standard deviation [SD]) age of 55.1 (10.6) years, and most (73%) were spouses/partners of patients with UG. UG affected caregivers' HRQOL, with over 30% feeling at least "quite a bit" stressed, overwhelmed, or physically exhausted/drained. Between 36%-50% of caregivers reported at least "moderate" burden associated with assisting patients with UG treatment, depending on the ULT used. Caregivers reported a 36% reduction in their ability to work among those employed and a 41% reduction in their ability to perform daily activities overall. On average, employed caregivers missed 2.7 hours of work in the prior 7 days due to caregiving responsibilities. CONCLUSION: Caring for a patient with UG substantially negatively impacted caregivers' HRQOL and interfered with caregivers' ability to work and perform daily activities.