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Patient Survey of current water Intake practices in autosomal dominant Polycystic kidney disease: the SIPs survey

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...

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Autores principales: El-Damanawi, Ragada, Harris, Tess, Sandford, Richard N., Karet Frankl, Fiona E., Hiemstra, Thomas F.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5466085/
https://www.ncbi.nlm.nih.gov/pubmed/28616208
http://dx.doi.org/10.1093/ckj/sfw153
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author El-Damanawi, Ragada
Harris, Tess
Sandford, Richard N.
Karet Frankl, Fiona E.
Hiemstra, Thomas F.
author_facet El-Damanawi, Ragada
Harris, Tess
Sandford, Richard N.
Karet Frankl, Fiona E.
Hiemstra, Thomas F.
author_sort El-Damanawi, Ragada
collection PubMed
description 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.
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spelling pubmed-54660852017-06-14 Patient Survey of current water Intake practices in autosomal dominant Polycystic kidney disease: the SIPs survey El-Damanawi, Ragada Harris, Tess Sandford, Richard N. Karet Frankl, Fiona E. Hiemstra, Thomas F. Clin Kidney J Hereditary Kidney Disease 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. Oxford University Press 2017-06 2017-02-17 /pmc/articles/PMC5466085/ /pubmed/28616208 http://dx.doi.org/10.1093/ckj/sfw153 Text en © The Author 2017. Published by Oxford University Press on behalf of ERA-EDTA. http://creativecommons.org/licenses/by/4.0/ This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Hereditary Kidney Disease
El-Damanawi, Ragada
Harris, Tess
Sandford, Richard N.
Karet Frankl, Fiona E.
Hiemstra, Thomas F.
Patient Survey of current water Intake practices in autosomal dominant Polycystic kidney disease: the SIPs survey
title Patient Survey of current water Intake practices in autosomal dominant Polycystic kidney disease: the SIPs survey
title_full Patient Survey of current water Intake practices in autosomal dominant Polycystic kidney disease: the SIPs survey
title_fullStr Patient Survey of current water Intake practices in autosomal dominant Polycystic kidney disease: the SIPs survey
title_full_unstemmed Patient Survey of current water Intake practices in autosomal dominant Polycystic kidney disease: the SIPs survey
title_short Patient Survey of current water Intake practices in autosomal dominant Polycystic kidney disease: the SIPs survey
title_sort patient survey of current water intake practices in autosomal dominant polycystic kidney disease: the sips survey
topic Hereditary Kidney Disease
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5466085/
https://www.ncbi.nlm.nih.gov/pubmed/28616208
http://dx.doi.org/10.1093/ckj/sfw153
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