178 Patient survey reveals insights into patient perceptions and understanding of polycystic kidney disease

Abstract Background and Aims This patient survey examines patient knowledge of polycystic kidney disease (PKD) and provides insights into their preferences, and communication received from healthcare teams. Method A 20-question, online, patient-facing survey was deployed on WebMD.com. Respondent confidentiality was maintained, and responses were de-identified and aggregated prior to analyses. No personally identifiable information was collected for the respondents in this study. The activity launched in April 2023 and data were collected through August 2023. Results In total, 331 people participated in the survey. Key clinical takeaways include: 44% live in an urban or metropolitan area, 43% live in the suburbs, and 13% live in rural towns 57% have been diagnosed with PKD and 43% are caregivers for patients with PKD 41% received the diagnosis of PKD >10 years ago and 36% between 1-2 years ago 71% the diagnosis was made via imaging tests, 47% family history, and 27% genetic testing (respondents could select all that apply) Regarding genetic testing, 42% brought up the topic themselves compared to 54% whose HCP brought it up ○ Reasons for genetic testing being brought up with HCP include family history (58%), PKD symptoms or complications (57%), testing required to confirm or diagnose PKD (56%), and family planning (27%) ○ Genetic testing results were explained by PCP (34%), nephrologist (65%), genetic counselor (51%), burse (30%, or NP/PA (51%) (respondents could select all that apply) Barriers to receiving care for PKD include limited access to HCPs (27%), Lack of knowledge of HCPs about PKD (37%), lack of health insurance (21%), poor communication with HCP (28%), difficulty with the healthcare system (29%), and lack of awareness of specialized care (24%) (respondents could select all that apply) Quality of life descriptions for the patient living with PKD were great (25%), good (56%), ok (15%), and not very good (4%) Sources for health information related to PKD include friends, family or coworker (27%), internet (42%), social media (34%), support groups (21%), and kidney foundations or organizations (51%) (respondents could select all that apply) Additional education was requested related to types of kidney disease (26%), what is PKD (21%), how PKD can progress (48%), PKD symptoms (34%), genetic testing (33%), PKD complications (47%), developing a treatment plan for PKD (33%), financial resources or assistance (29%), support groups (22%), ways to manage