OBJECTIVES: Autosomal dominant polycystic kidney disease (ADPKD) is a rare, dominantly inherited systemic disease resulting in gradual kidney enlargement and kidney failure over time. Commonly, multiple members of a family across several generations are affected by the disease and often patients with ADPKD also function as caregivers for other family members. This study explored the burden experienced by caregivers for patients with ADPKD.

METHODS: Focus groups with 139 caregivers for patients with ADPKD in 14 countries (Argentina, Australia, Brazil, Canada, China, Czech Republic, Hungary, Japan, Poland, Romania, South Korea, Spain, Taiwan, United States) using iterative, concept elicitation methodology to understand the impacts of caring for a patient with ADPKD.

RESULTS: Caregivers for patients with ADPKD (66.9% female, 33.1% male) provide assistance with activities of daily living and emotional support. Furthermore, 25 caregivers (88% female, 12% male) were also diagnosed with ADPKD themselves, which elevated their burden. Almost all caregivers in the study provided care or support for immediate family members (94.8%) while a smaller percentage (2.9%) were assisting a distal relative or friend. Caregivers reported impacts on emotional (74.1%), social (38.5%), work/employment (26.6%), financial (23.7%), and physical (17.3%) aspects of their daily lives. There were slight differences in how caregivers in various regions emphasized impacts, and impacts varied depending on the disease stage of the ADPKD patient and the caregiver-patient relationship.

CONCLUSIONS: Caregivers for patients reported substantial impacts on their daily lives which was globally consistent. Defining caregiver burden is essential to understanding ways of supporting the ADPKD population in the community.