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

Abstract

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. 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. 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. Caring for a patient with UG substantially negatively impacted caregivers' HRQOL and interfered with caregivers' ability to work and perform daily activities.