Patient-Centered Insights on Treatment Adherence and Social Determinants of Health in Autosomal Dominant Polycystic Kidney Disease

Background: The Polycystic Kidney Disease Foundation (PKDF) advocates, educates, and funds research for PKD, the most common genetic kidney disease in the United States (U.S.), estimated to affect around 600,000 individuals. This study explores patient treatment adherence among patients within the Autosomal Dominant Polycystic Kidney Disease (ADPKD) population, examining the influence of social determinants of health (SDOH). Understanding these factors is essential for effective treatment strategies, aligning with Healthy People 2030’s recognition of social determinants’ impact on health outcomes. PKDF is uniquely positioned to address this issue, thereby empowering clinicians, researchers, and patients towards improved healthcare approaches and overall health outcomes. Methods: The study, conducted via an online survey and the ADPKD Registry, adopted a SDOH framework to investigate factors affecting treatment adherence among individuals diagnosed with ADPKD. Approved by an Institutional Review Board, this study includes U.S. individuals who reported partaking in various treatment or management strategies for ADPKD such as diet and lifestyle interventions, non-kidney related medications, kidney related medications, dialysis, and others. Results: Among 489 participants, 95% are non-Hispanic, 92% white, 69% female, and 71% pre-transplant. Of 487 participants identified as partaking in a treatment(s), 62% reported diet and lifestyle interventions, 54% kidney-related medications, and 40% non-kidney related medications. Of those who encountered treatment barriers, unclear clinician guidance, nephrologist transitions, and financial constraints were cited. Conclusion: The study, encompassing primarily non-Hispanic, white, female, and pre-transplant participants, identified key treatments such as diet and lifestyle interventions, and medications for kidney and non-kidney related conditions. Although a non-significant number of participants reported barriers to treatment, such as unclear guidance, nephrologist transitions, and financial constraints, these underline areas for improved patient care. The findings emphasize the importance of specialized intervention and improved affordable access to enhance care for individuals diagnosed with ADPKD.