Quality of life in individuals with neurofibromatosis type 1 associated cutaneous neurofibromas: validation of the Dutch cNF-Skindex

Abstract Background Almost all patients with Neurofibromatosis type 1 (NF1) develop cutaneous neurofibroma (cNF), benign dermal tumours that have a large impact on the patient’s Quality of Life (QoL). The French cNF-Skindex is the first questionnaire to specifically assess cNF-related QoL in patients with NF1. We aimed to adapt and validate a Dutch version of the cNF-Skindex. Methods The questionnaire was translated using forward and backwards translation, and subsequently administered to a sample of 59 patients on two separate occasions. Feasibility was evaluated by the presence of floor/ceil... Mehr ...

Verfasser: Britt A. E. Dhaenens
Sarah A. van Dijk
Laura Fertitta
Walter Taal
Pierre Wolkenstein
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 / Cutaneous neurofibroma / Quality of life / QoL / Patient-reported outcome measure / cNF-Skindex / Public aspects of medicine / RA1-1270
Sprache: Englisch
Permalink: https://search.fid-benelux.de/Record/base-28987838
Datenquelle: BASE; Originalkatalog
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Link(s) : https://doi.org/10.1186/s41687-024-00732-w