Assessment of Parental Needs and Quality of Life in Children with a Rare Neuromuscular Disease (Pompe Disease): A Quantitative–Qualitative Study

Assessment of Parental Needs and Quality of Life in Children with a Rare Neuromuscular Disease (Pompe Disease): A Quantitative–Qualitative Study

Pompe disease (PD) is a rare metabolic disorder with progressive neuromuscular consequences that negatively impact a child’s development and quality of life (QoL). Despite an improved prognosis with treatment, the risk for early death due cardiorespiratory crisis remains. Parents not only face physi...

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Bibliographic Details
Main Authors: Loredana Benedetto, Olimpia Musumeci, Annunziata Giordano, Mattia Porcino, Massimo Ingrassia
Format: Article
Language:English
Published: MDPI AG 2023-11-01
Series:Behavioral Sciences
Subjects:
childhood rare diseases
Pompe disease
quality of life
parental needs
prevention of burden
Online Access:https://www.mdpi.com/2076-328X/13/12/956

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