Abstract
RATIONALE & OBJECTIVE: There is limited published research on how autosomal dominant polycystic kidney disease (ADPKD) impacts caregivers. This study explored how caregivers of individuals with ADPKD perceive the burdens placed on them by the disease. STUDY DESIGN: Qualitative study consisting of focus groups and interviews. Discussions were conducted by trained interviewers using semi-structured interview guides. SETTING & PARTICIPANTS: The research was conducted in 14 countries in North America, South America, Asia, Australia, and Europe. Eligible participants were greater than or equal to 18 years old and caring for a child or adult diagnosed with ADPKD. ANALYTICAL APPROACH: The concepts reported were coded using qualitative research software. Data saturation was reached when subsequent discussions introduced no new key concepts. RESULTS: Focus groups and interviews were held with 139 participants (mean age, 44.9 years; 66.9% female), including 25 participants who had a diagnosis of ADPKD themselves. Caregivers reported significant impact on their emotional (74.1%) and social life (38.1%), lost work productivity (26.6%), and reduced sleep (25.2%). Caregivers also reported worry about their financial situation (23.7%). In general, similar frequencies of impact were reported among caregivers with ADPKD versus caregivers without ADPKD, with the exception of sleep (8.0% vs 28.9%, respectively), leisure activities (28.0% vs 40.4% respectively), and work/employment (12.0% vs 29.8%, respectively). LIMITATIONS: The study was observational and designed to elicit concepts, and only descriptive analyses were conducted. CONCLUSIONS: These findings highlight the unique burden on caregivers in ADPKD, which results in substantial emotional, social, and professional/financial impact.