title: Quality of life in Duchenne muscular dystrophy: the subjective impact on children and parents.
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 < .001) was significantly associated to lower health-related quality of life in Physical Functioning. On the contrary, Family Strain Questionnaire scores were not influenced by children's characteristics. Despite the presence of Duchenne muscular dystrophy deeply impairs health-related quality of life, some areas of well-being are present both in children and caregivers.
authors.affiliation: Allergy and Respiratory Disease, Department of Internal Medicine, University of Genoa, Genoa, Italy. ilaria.baiardini@libero.it
authors.forename: Ilaria
authors.initials: I
authors.lastname: Baiardini
authors.forename: Carlo
authors.initials: C
authors.lastname: Minetti
authors.forename: Simona
authors.initials: S
authors.lastname: Bonifacino
authors.forename: Anna
authors.initials: A
authors.lastname: Porcu
authors.forename: Catherine
authors.initials: C
authors.lastname: Klersy
authors.forename: Paolo
authors.initials: P
authors.lastname: Petralia
authors.forename: Sara
authors.initials: S
authors.lastname: Balestracci
authors.forename: Filippo
authors.initials: F
authors.lastname: Tarchino
authors.forename: Stefania
authors.initials: S
authors.lastname: Parodi
authors.forename: Giorgio Walter
authors.initials: GW
authors.lastname: Canonica
authors.forename: Fulvio
authors.initials: F
authors.lastname: Braido
mesh_terms: D000328:Adult; D002648:Child; D017281:Cost of Illness; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D020388:Muscular Dystrophy, Duchenne / Q000523:psychology*; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D011788:Quality of Life; D011795:Surveys and Questionnaires