Quality of life in duchenne muscular dystrophy: The subjective impact on children and parents

Ilaria Baiardini, Carlo Minetti, Simona Bonifacino, Anna Porcu, Catherine Klersy, Paolo Petralia, Sara Balestracci, Filippo Tarchino, Stefania Parodi, Giorgio Walter Canonica, Fulvio Braido

Research output: Contribution to journalArticle

Abstract

Duchenne muscular dystrophy results in a broad spectrum of physical and psychosocial consequences, both to patient and caregivers. This study was aimed to explore health-related quality of life and its possible determinants in Duchenne muscular dystrophy children and in their parents. Caregivers (21 mothers and 6 fathers; mean age, 40.04 years) of 27 Duchenne muscular dystrophy patients (mean age, 11.26 years) completed the validated Children Health Questionnaire-Parent Form 50 and the Family Strain Questionnaire. Children reported significantly lower scores than normative group in 10 of 15 Children Health Questionnaire dimensions. Only the use of wheelchairs (P =.02) and ventilators (P

Original languageEnglish
Pages (from-to)707-713
Number of pages7
JournalJournal of Child Neurology
Volume26
Issue number6
DOIs
Publication statusPublished - Jun 2011

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Keywords

  • caregivers
  • Duchenne muscular dystrophy
  • quality of life

ASJC Scopus subject areas

  • Clinical Neurology
  • Pediatrics, Perinatology, and Child Health

Cite this

Baiardini, I., Minetti, C., Bonifacino, S., Porcu, A., Klersy, C., Petralia, P., Balestracci, S., Tarchino, F., Parodi, S., Canonica, G. W., & Braido, F. (2011). Quality of life in duchenne muscular dystrophy: The subjective impact on children and parents. Journal of Child Neurology, 26(6), 707-713. https://doi.org/10.1177/0883073810389043