Patient-reported outcome measures for pain in autosomal dominant polycystic kidney disease: A systematic review.

Pain is a common symptom in people with autosomal dominant polycystic kidney disease (ADPKD), but it is assessed and reported inconsistently in research, and the validity of the measures remain uncertain. The aim of this study was to identify the characteristics, content, and psychometric properties...

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Autores principales:	Patrizia Natale, Elyssa Hannan, Bénédicte Sautenet, Angela Ju, Ronald D Perrone, Eva Burnette, Niek Casteleijn, Arlene Chapman, Sarah Eastty, Ron Gansevoort, Marie Hogan, Shigeo Horie, Bertrand Knebelmann, Richard Lee, Reem A Mustafa, Richard Sandford, Amanda Baumgart, Allison Tong, Giovanni F M Strippoli, Jonathan C Craig, Gopala K Rangan, Yeoungjee Cho
Formato:	article
Lenguaje:	EN
Publicado:	Public Library of Science (PLoS) 2021
Materias:	Medicine R Science Q
Acceso en línea:	https://doaj.org/article/80fcdff10bca4717a5af9c1ac2f27e80
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spelling	oai:doaj.org-article:80fcdff10bca4717a5af9c1ac2f27e802021-12-02T20:11:14ZPatient-reported outcome measures for pain in autosomal dominant polycystic kidney disease: A systematic review.1932-620310.1371/journal.pone.0252479https://doaj.org/article/80fcdff10bca4717a5af9c1ac2f27e802021-01-01T00:00:00Zhttps://doi.org/10.1371/journal.pone.0252479https://doaj.org/toc/1932-6203Pain is a common symptom in people with autosomal dominant polycystic kidney disease (ADPKD), but it is assessed and reported inconsistently in research, and the validity of the measures remain uncertain. The aim of this study was to identify the characteristics, content, and psychometric properties of measures for pain used in ADPKD. We conducted a systematic review including all trials and observational studies that reported pain in people with ADPKD. Items from all measures were categorized into content and measurement dimensions of pain. We assessed the general characteristics and psychometric properties of all measures. 118 studies, we identified 26 measures: 12 (46%) measures were developed for a non-ADPKD population, 1 (4%) for chronic kidney disease, 2 (8%) for polycystic liver disease and 11 (42%) specifically for ADPKD. Ten anatomical sites were included, with the lower back the most common (10 measures [39%]), four measurement dimensions (intensity (23 [88%]), frequency (3 [12%]), temporality (2 [8%]), and sensory (21 [81%]), two pain types, nociceptive including visceral (15 [58%]) and somatic (5 [20%]), and neuropathic (2 [8%]), and twelve impact dimensions, where the most frequent was work (5 [31%]). The validation data for the measures were variable and only the ADPKD Impact Scale reported all psychometric domains. The measures for pain in ADPKD varied in terms of content and length, and most had not been validated in ADPKD. A standardized psychometrically robust measure that captures patient-important dimensions of pain is needed to evaluate and manage this debilitating complication of ADPKD.Patrizia NataleElyssa HannanBénédicte SautenetAngela JuRonald D PerroneEva BurnetteNiek CasteleijnArlene ChapmanSarah EasttyRon GansevoortMarie HoganShigeo HorieBertrand KnebelmannRichard LeeReem A MustafaRichard SandfordAmanda BaumgartAllison TongGiovanni F M StrippoliJonathan C CraigGopala K RanganYeoungjee ChoPublic Library of Science (PLoS)articleMedicineRScienceQENPLoS ONE, Vol 16, Iss 5, p e0252479 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Medicine R Science Q
spellingShingle	Medicine R Science Q Patrizia Natale Elyssa Hannan Bénédicte Sautenet Angela Ju Ronald D Perrone Eva Burnette Niek Casteleijn Arlene Chapman Sarah Eastty Ron Gansevoort Marie Hogan Shigeo Horie Bertrand Knebelmann Richard Lee Reem A Mustafa Richard Sandford Amanda Baumgart Allison Tong Giovanni F M Strippoli Jonathan C Craig Gopala K Rangan Yeoungjee Cho Patient-reported outcome measures for pain in autosomal dominant polycystic kidney disease: A systematic review.
description	Pain is a common symptom in people with autosomal dominant polycystic kidney disease (ADPKD), but it is assessed and reported inconsistently in research, and the validity of the measures remain uncertain. The aim of this study was to identify the characteristics, content, and psychometric properties of measures for pain used in ADPKD. We conducted a systematic review including all trials and observational studies that reported pain in people with ADPKD. Items from all measures were categorized into content and measurement dimensions of pain. We assessed the general characteristics and psychometric properties of all measures. 118 studies, we identified 26 measures: 12 (46%) measures were developed for a non-ADPKD population, 1 (4%) for chronic kidney disease, 2 (8%) for polycystic liver disease and 11 (42%) specifically for ADPKD. Ten anatomical sites were included, with the lower back the most common (10 measures [39%]), four measurement dimensions (intensity (23 [88%]), frequency (3 [12%]), temporality (2 [8%]), and sensory (21 [81%]), two pain types, nociceptive including visceral (15 [58%]) and somatic (5 [20%]), and neuropathic (2 [8%]), and twelve impact dimensions, where the most frequent was work (5 [31%]). The validation data for the measures were variable and only the ADPKD Impact Scale reported all psychometric domains. The measures for pain in ADPKD varied in terms of content and length, and most had not been validated in ADPKD. A standardized psychometrically robust measure that captures patient-important dimensions of pain is needed to evaluate and manage this debilitating complication of ADPKD.
format	article
author	Patrizia Natale Elyssa Hannan Bénédicte Sautenet Angela Ju Ronald D Perrone Eva Burnette Niek Casteleijn Arlene Chapman Sarah Eastty Ron Gansevoort Marie Hogan Shigeo Horie Bertrand Knebelmann Richard Lee Reem A Mustafa Richard Sandford Amanda Baumgart Allison Tong Giovanni F M Strippoli Jonathan C Craig Gopala K Rangan Yeoungjee Cho
author_facet	Patrizia Natale Elyssa Hannan Bénédicte Sautenet Angela Ju Ronald D Perrone Eva Burnette Niek Casteleijn Arlene Chapman Sarah Eastty Ron Gansevoort Marie Hogan Shigeo Horie Bertrand Knebelmann Richard Lee Reem A Mustafa Richard Sandford Amanda Baumgart Allison Tong Giovanni F M Strippoli Jonathan C Craig Gopala K Rangan Yeoungjee Cho
author_sort	Patrizia Natale
title	Patient-reported outcome measures for pain in autosomal dominant polycystic kidney disease: A systematic review.
title_short	Patient-reported outcome measures for pain in autosomal dominant polycystic kidney disease: A systematic review.
title_full	Patient-reported outcome measures for pain in autosomal dominant polycystic kidney disease: A systematic review.
title_fullStr	Patient-reported outcome measures for pain in autosomal dominant polycystic kidney disease: A systematic review.
title_full_unstemmed	Patient-reported outcome measures for pain in autosomal dominant polycystic kidney disease: A systematic review.
title_sort	patient-reported outcome measures for pain in autosomal dominant polycystic kidney disease: a systematic review.
publisher	Public Library of Science (PLoS)
publishDate	2021
url	https://doaj.org/article/80fcdff10bca4717a5af9c1ac2f27e80
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Patient-reported outcome measures for pain in autosomal dominant polycystic kidney disease: A systematic review.

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