The PlexiQoL, a patient-reported outcome measure on quality of life in neurofibromatosis type 1-associated plexiform neurofibroma: translation, cultural adaptation and validation into the Dutch language for the Netherlands

Abstract Background Half of the patients with Neurofibromatosis type 1 (NF1) develop one or more tumours called plexiform neurofibromas, which can have a significant impact on Quality of Life (QoL). The PlexiQoL questionnaire is a disease-specific QoL measure for adults with NF1-associated plexiform neurofibromas. The aim of this study was to adapt and validate a Dutch version of the PlexiQoL for the Netherlands. Methods The PlexiQoL was translated using the dual-panel methodology, followed by cognitive debriefing interviews to assess face and content validity. The psychometric properties were... Mehr ...

Verfasser: Britt A. E. Dhaenens
Sarah A. van Dijk
Walter Taal
D. Christine Noordhoek
Anna Coffey
Stephen P. McKenna
Rianne Oostenbrink
Dokumenttyp: Artikel
Erscheinungsdatum: 2024
Reihe/Periodikum: Journal of Patient-Reported Outcomes, Vol 8, Iss 1, Pp 1-8 (2024)
Verlag/Hrsg.: SpringerOpen
Schlagwörter: Neurofibromatosis type 1 / Plexiform neurofibroma / Quality of life / QoL / Patient-reported outcome measure / PRO / Public aspects of medicine / RA1-1270
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-28987380
Datenquelle: BASE; Originalkatalog
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Link(s) : https://doi.org/10.1186/s41687-024-00714-y