Perspectives and practices of people living with polycystic kidney disease regarding dietary and fluid management

Abstract

AIM: To describe the perspectives and current practices of people living with Autosomal Dominant Polycystic Kidney Disease (ADPKD) regarding diet and fluid management. BACKGROUND: Effective dietary and lifestyle interventions are a priority to the PKD community. Current dietary practices, including the uptake of novel diet therapies, have not been described. METHODS: A 41-item online survey was distributed to adults living with ADPKD via PKD Australia and PKD-related social media groups on Facebook. The survey combined closed/open-ended and ranking questions to assess current practices and uptake of novel diet therapies. RESULTS: Preliminary results of the survey include 230 respondents. Most respondents were female (70.0%), aged 40-69 years (73%), living in Australia (55.0%), employed (60.0%), with stage 1-3 CKD (58.3%), and diagnosed for over 10 years (76.1%). The majority (75.3%) sourced PKD-related dietary information online, with fewer respondents receiving advice from nephrologists (44.9%) and dietitians (30.0%). Participants stated that conflicting dietary advice from health professionals, a lack of evidence through clinical trials, and a lack of access to specialist renal dietitians, reduced their confidence in making dietary choices. In the past 12 months, the most common dietary changes were increasing water intake (89.5%), reducing carbohydrate consumption (81.9%), and lowering sodium intake (78.2%). Over one third (35.5%) reported following a non-standard diet for PKD, most commonly ketogenic (69.1%), time-restricted feeding (53.1%) and intermittent fasting (18.5%). Participants identified ketogenic diet (50.9%), intermittent fasting (36.4%) and the Mediterranean diet (36.4%) as priorities for future dietary clinical trials. CONCLUSIONS: People with ADPKD are actively adopting novel dietary strategies to manage PKD. Future dietary clinical trials should be guided by the priorities and experiences of the PKD community.