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

Britt A. E. Dhaenens; Sarah A. van Dijk; Walter Taal; D. Christine Noordhoek; Anna Coffey; Stephen P. McKenna; Rianne Oostenbrink

doi:10.1186/s41687-024-00714-y

March 18, 2024Journal of Patient-Reported OutcomesOpen Access

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

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Key Points

Quality of life significantly decreases among adults with plexiform neurofibromas, affecting daily activities.
The study involved translating and validating the PlexiQoL questionnaire into Dutch for accurate assessments.
This methodological approach ensures the adapted tool measures relevant outcomes effectively for the Dutch population, enhancing patient care in NF1 management. Significant implications arise for improved clinical practices, fostering better support for individuals suffering from NF1-related issues.

Implication

Cultural adaptation and validation of the PlexiQoL measure in adults with NF1-associated neurofibromas highlights QoL impacts.

Abstract

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.

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Cite This Study

Dhaenens et al. (2024) studied this question.

synapsesocial.com/papers/68e7387fb6db6435876b15cf https://doi.org/10.1186/s41687-024-00714-y

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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

Key Points

Implication

Abstract

Discussion

Cite This Study

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

Key Points

Implication

Abstract

Discussion

Cite This Study

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