Ms Stephanie Karam1, Ms Cheryl WU1, Prof Anna Rangan1,2, Ms Vanessa Cullen3, Prof Gopi Rangan4, Dr Jessica Dawson5,6
1NHMRC Clinical Trials Centre, University Of Sydney; Dept Nutrition And Dietetics, St George Hospital, Sydney, , Australia, 2Nutrition and Dietetics Discipline, Susan Wakil School of Nursing and Midwifery, Faculty of Medicine and Health, University of Sydney., Sydney, Australia, 3Charles Perkins Centre, Sydney Nursing School. Faculty of Medicine and Health, University of Sydney., Sydney, Australia, 4PKD Australia, Roseville, New South Wales, Australia , Sydney, Australia, 5Michael Stern Laboratory for Polycystic Kidney Disease, Centre for Transplant and Renal Research, Westmead Institute for Medical Research, The University of Sydney, Australia, Sydney, Australia, 6Dept of Nutrition and Dietetics, St George Hospital, Sydney, New South Wales, Australia, Sydney, Australia
Biography:
Jess is an Advanced Accredited Practicing Dietitian with over 15 years’ experience as a clinical dietitian. She completed her PhD in 2021 that evaluated the impact of digital interventions in chronic kidney disease. She is passionate about making dietary counselling accessible and empowering people to make dietary change to improve their health.
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.
Conclusion:
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.