Establishing a core outcome measure for pain in patients with autosomal dominant polycystic kidney disease: a consensus workshop report.
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Authors
Natale, Patrizia
Perrone, Ronald D
Tong, Allison
Harris, Tess
Hannan, Elyssa
Ju, Angela
Burnette, Eva
Casteleijn, Niek F
Chapman, Arlene
Eastty, Sarah
Gansevoort, Ron T
Hogan, Marie
Horie, Shigeo
Knebelmann, Bertrand
Lee, Richard
Mustafa, Reem A
Sandford, Richard
Baumgart, Amanda
Craig, Jonathan C
Rangan, Gopala K
Sautenet, Bénédicte
Viecelli, Andrea K
Evangelidis, Nicole
Guha, Chandana
Logeman, Charlotte
Matus Gonzalez, Andrea
Strippoli, Giovanni FM
Cho, Yeoungjee
Publication Date
2022-03Journal Title
Clin Kidney J
ISSN
2048-8505
Publisher
Oxford University Press (OUP)
Volume
15
Issue
3
Pages
407-416
Language
eng
Type
Article
This Version
VoR
Metadata
Show full item recordCitation
Natale, P., Perrone, R. D., Tong, A., Harris, T., Hannan, E., Ju, A., Burnette, E., et al. (2022). Establishing a core outcome measure for pain in patients with autosomal dominant polycystic kidney disease: a consensus workshop report.. Clin Kidney J, 15 (3), 407-416. https://doi.org/10.1093/ckj/sfab110
Abstract
BACKGROUND: Pain is the highest prioritized patient-reported outcome in people with autosomal dominant polycystic kidney disease (ADPKD) but remains infrequently and inconsistently measured in clinical trials and poorly managed in clinical settings. A recently completed systematic review of pain in ADPKD identified 26 different outcome measures. None of these measures were considered appropriate as a core outcome measure due to the lack of patient-important dimensions, inadequate content, relatively long duration of completion time and limited evidence to support psychometric robustness. METHODS: We convened an international Standardized Outcomes in Nephrology-Polycystic Kidney Disease consensus workshop involving 21 patients/caregivers and 40 health professionals (clinicians, nurses, researchers, policy makers and industry representatives) from 18 countries to discuss the identification or development of a core outcome measure for pain. RESULTS: Four themes were identified highlighting fundamental issues for the measurement of pain in ADPKD: distressing and disrupting life participation; variability and ambiguity in defining pain; stigma, frustration and adaptation to pain; and ensuring validity and feasibility of pain measures. CONCLUSIONS: Existing measures were found to be insufficient in capturing pain as a core outcome and there was consensus on the need for a new validated measure that is simple, succinct and addresses the impact of pain on life participation. This measure will facilitate the appropriate prioritization of pain in all trials and guide clinical decision making in people with ADPKD.
Keywords
Pain, Measure, Workshop, Patient-reported Outcomes, Adpkd
Identifiers
35211300, PMC8862067
External DOI: https://doi.org/10.1093/ckj/sfab110
This record's URL: https://www.repository.cam.ac.uk/handle/1810/335421
Rights
Attribution-NonCommercial 4.0 International
Licence URL: https://creativecommons.org/licenses/by-nc/4.0/
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