Abstract: FR-PO0089
Caregiver Burden and Decision-Making in ADPKD: Implications for Treatment Choices and Clinical Trial Participation
Session Information
- ADPKD and Cystic Kidney Disease - 2
October 23, 2026 | Location: Exhibit Hall A, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Genetic Diseases of the Kidneys
- 1201 Genetic Diseases of the Kidneys: Cystic (Monogenic)
Authors
- Galletti, Flavia, PKD International, Geneva, Switzerland
- Wang, Bill, PKD International, Geneva, Switzerland
- Chidirala, Surendar Reddy, Novartis AG, Basel, BS, Switzerland
- Srinivas, Srini, Novartis Pharmaceuticals Corporation, East Hanover, New Jersey, United States
- Twiston Davies, Helen, Novartis AG, Basel, BS, Switzerland
- Afatsawo, Catherine, Novartis AG, Basel, BS, Switzerland
Background
ADPKD is the most common hereditary kidney disease, usually diagnosed in adulthood. Around 50% of affected people reach kidney failure by the age of 60. Beyond the clinical burden on patients and families, ADPKD puts substantial emotional, logistical & occupational strain on caregivers. The impact can be more severe if, as often, caregivers also have ADPKD. To gather insights into necessary support strategies & patient-centered clinical trial design we surveyed caregiver burden, outcome priorities & views relevant to treatment & research participation.
Methods
Scoping literature research of Embase/PubMed to identify English-language publications from 2021 to 2025 reporting caregiver experience in ADPKD. Relevant articles were analyzed qualitatively for emotional & psychological burden; impact on daily life & work; financial strain; uncertainty & decision-making burden; outcome priorities and coping & support needs.
Results
Seven studies met the inclusion criteria. Emotional stress was the heaviest burden, mentioned by up to 74% of respondents. Caregivers experienced deep anxiety about loved ones’ futures and hereditary transmission. The lack of cure was an important stressor. Balancing medical appointments with work & family duties was demanding and at times overwhelming. Caregivers reported reduced social activities, sleep disturbances & physical exhaustion. Financial concerns were common, particularly in countries without universal healthcare insurance. Many caregivers had reduced work hours or given up employment to provide care.
Preserving kidney function & delaying time to dialysis was the highest-priority ADPKD outcome, followed by reduced risk of cardiovascular (CV) disease & mortality, and pain management. Caregivers called for accessible information, emotional & family support.
Conclusion
Caregivers must be partnered and seen, including by pharmaceutical companies. Clinical trial outcomes should include slowed disease progression, less pain and reduced risk of CV disease & mortality, and potentially associated improvements in physical and emotional well-being. Closer collaboration and communication between caregivers, pharma and healthcare providers would empower caregivers and may increase patients’ access/adherence to available treatments and their participation in clinical trials.
Funding
- Commercial Support – Novartis AG