Patient Survey of current water Intake practices in autosomal dominant Polycystic kidney disease: the SIPs survey
Clinical Kidney Journal
Oxford University Press
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El-Damanawi, R., Harris, T., Sandford, R., Karet Frankl, F., & Hiemstra, T. (2017). Patient Survey of current water Intake practices in autosomal dominant Polycystic kidney disease: the SIPs survey. Clinical Kidney Journal https://doi.org/10.1093/ckj/sfw153
Background: Autosomal dominant polycystic kidney disease (ADPKD) affects 12.5 million worldwide. Vasopressin drives cysts growth and in animal models can be suppressed through high water intake. A randomized controlled trial of ‘high’ versus ‘standard’ water intake in ADPKD is essential to determine if this intervention is beneficial. We conducted an ADPKD patient survey to gain an understanding of current fluid intake practices and the design challenges of a randomized water intake trial. Methods: In collaboration with the PKD Charity, we developed and distributed an online survey to ADPKD patients over age 16 years and not on renal replacement therapy. Results: Of the 2377 invited, 89 ADPKD patients completed the Survey of current water Intake practices in autosomal dominant Polycystic kidney disease (SIPs) online questionnaire. Most were female (65, 73%) and white (84, 94%), with a median age group of 45–49 years. The risk of contamination between treatment arms was highlighted by the survey as the majority (70, 79%) routinely discussed ADPKD management with family despite only 17% sharing the same household. More participants reported drinking beyond thirst (65, 73%) than those actually indicating a daily fluid intake of >2 L (54, 61%). This discrepancy emphasizes inaccuracies of fluid intake estimates and the requirement for objective methods of measuring water intake. Overall, only 51% believed high water intake was beneficial, while 91% were willing to participate in research evaluating this. Conclusion: ADPKD poses unique design challenges to a randomized water intake trial. However, the trial is likely to be supported by the ADPKD community and could impact significantly on PKD management and associated healthcare costs.
autosomal dominant, clinical trials, polycystic kidney disease, water, vasopressin
We thank the PKD Charity for their help with the survey. R.E.-D. is supported by the PKD Charity and the Addenbrooke’s Charitable Trust. T.F.H. and F.E.K.F. are supported by the National Institute for Health Research (NIHR) and the Cambridge Biomedical Research Centre. This work was also supported by the British Renal Society and the British Kidney Patient Association.
Kidney Research UK (TF-009-20161125)
British Renal Society (BRS) (unknown)
Addenbrooke's Charitable Trust (ACT) (Minute No 24/15A)
External DOI: https://doi.org/10.1093/ckj/sfw153
This record's URL: https://www.repository.cam.ac.uk/handle/1810/263517
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