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: Dhaenens, Britt A. E.
van Dijk, Sarah A.
Taal, Walter
Noordhoek, D. Christine
Coffey, Anna
McKenna, Stephen P.
Oostenbrink, Rianne
Dokumenttyp: Datenquelle
Erscheinungsdatum: 2024
Verlag/Hrsg.: figshare
Schlagwörter: Space Science / Medicine / Sociology / FOS: Sociology / Cancer / Science Policy
Sprache: unknown
Permalink: https://search.fid-benelux.de/Record/base-29167743
Datenquelle: BASE; Originalkatalog
Powered By: BASE
Link(s) : https://dx.doi.org/10.6084/m9.figshare.c.7127828.v1

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 evaluated by administering the questionnaire on two separate occasions to a sample of adults with NF1 and plexiform neurofibromas. Feasibility was evaluated by the presence of floor/ceiling effects. Reliability was assessed by evaluating Cronbach’s alpha coefficient and test-retest reliability, using Spearman’s rank correlation coefficients. Mann-Whitney U tests were used to check for known group validity. The ...