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April 21, 2024European Journal of Paediatric NeurologyOpen Access

Quality of life and support needs in children, adolescents, and young adults with facioscapulohumeral dystrophy, a mixed-method study

Jildou N. Dijkstra Nathaniël B. Rasing Helena T.M. Boon Sandra Altena-Rensen Edith H. C. Cup Anke Lanser Ietske Siemann Baziel G.M. van Engelen Corrie E. Erasmus Nicol C. Voermans

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Abstract

Quality of life (QoL) in children with facioscapulohumeral dystrophy (FSHD) seems plausible decreased. Little is known about factors influencing QoL in children with FSHD. Our objective is to explore factors contributing to the QoL of children, adolescents, and young adults with FSHD, to describe how they experience life with FSHD, and to report their support needs.

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Cite This Study

Dijkstra et al. (2024) studied this question.

synapsesocial.com/papers/68e6e3efb6db64358765f7ca https://doi.org/10.1016/j.ejpn.2024.04.006

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