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

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 health care resource use.

Four caregivers participated in CE interviews, which informed survey development. Separately, 40 caregivers completed the survey. Survey respondents were predominantly female (73%) and had a mean age of 55.1 (SD 10.6) years, and most (73%) were spouses/partners of patients with UG. UG affected caregivers' HRQOL, with more than 30% feeling at least "quite a bit" stressed, overwhelmed, or physically exhausted/drained. Between 36% and 50% of caregivers reported at least "moderate" burden associated with assisting patients with UG treatment, depending on the ULT used. Caregivers reported a 41% reduction in their ability to perform daily activities overall, and among those employed, they reported a 36% reduction in their ability to work. On average, employed caregivers missed 2.7 hours of work in the prior seven 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.