DIET IN THE MANAGEMENT OF NON-DIALYSIS DEPENDENT POLYCYSTIC KIDNEY DISEASE (PKD): PERCEPTIONS AND EXPERIENCES OF PATIENTS LIVING WITH PKD
Ms Stephanie Notaras1,3, Professor Kelly Lambert2, Professor Janette Perz1, Professor Angela Makris1,3
1Western Sydney University, Campbelltown, Australia, 2University of Wollongong, Wollongong, Australia, 3South Western Sydney Local Health District, Liverpool , Australia
Aim: Explore the views of patients living with non-dialysis dependent PKD on the role of diet in disease management and their experiences with dietary change.
Background: Nutrition recommendations that have been shown to reduce PKD progression can be confusing and adherence difficult. Access to renal dietitians prior to dialysis is often limited. Reducing progression towards dialysis remains the primary goal for patients. Little is known about the patient experience of dietary changes and their perceptions of the role of nutrition.
Methods: A 32-item online survey was distributed via patient-advocacy kidney organisations and semi-structured patient interviews were undertaken. Data was analysed descriptively and qualitatively. Survey data were assessed to determine associations (SPSS v28). Interview data was analysed thematically (Dedoose).
Results: PKD patients (n=745) completed the survey (76% female, 80% over 50yo, 49% in stages 3-5 PKD). Diet for PKD management was rated as very-extremely important (88%). Over 70% of patients reported not being referred to a dietitian by their nephrologist. Referrals were significantly less likely for those with stages 1-3 CKD (p<0.001). Ten patients were interviewed (50% female, mean eGFR43ml/min and age 50 years). Three themes emerged: patients’ perceptions of nutrition importance were not matched to their nephrologist’s , patients’ were left to undertake their own research into nutrition recommendations to reduce progression and routine support from renal dietitians is desired.
Conclusions: Diet is perceived as an important part of PKD management but patients are inadequately referred to renal dietetic services to slow disease progression. Raising nephrologists awareness regarding the evidence on diet and PKD progression is needed. Also advocating for changes in models of care to facilitate funding for earlier access to renal dietetic services.
Presentation Slides PDF – Click here
Biography:
Stephanie Notaras is Renal Dietitian with a Masters in Counselling and a PhD Candidate. She is investigating the impact of dietetic intervention on CKD progression and behaviour change elements that may improve patient outcomes. Stephanie trains dietitians on a counselling and behaviour change framework she has developed, evaluated and published for better patient outcomes and retention. She also lectures on this topic at a university level. Her career mission is to help people living with CKD receive earlier access to renal dietetic services to assist them in slowing disease progression and ensuring dietitians have the necessary counselling and behaviour change skills to help people facilitate change effectively.