title: Health-related quality of life in boys with Duchenne muscular dystrophy: agreement between parents and their sons.
abstract: This study investigated agreement between boys and their parents when reporting on health-related quality of life and the effects of steroid use, age, and physical functioning on self-reported health-related quality of life in boys with Duchenne muscular dystrophy. The Pediatric Quality of Life Inventory™ and brief functional measures were administered to 35 parent-son dyads. We found that agreement between parents and their sons was moderate (intraclass correlation coefficient [ICC](2,1) = 0.66; 95% confidence interval [CI], 0.40-0.80) to poor (ICC(2,1) = 0.64; 95% CI, 0.43-0.64). The boys' self-reports revealed a relationship between disease progression and physical functioning (r = -.75; P = .01); however, disease stage was not related to psychosocial functioning (r = -.27; NS). Parents and boys affected by Duchenne muscular dystrophy have a moderate to poor agreement on health-related quality of life measures, with parents reporting lower overall health-related quality of life when compared with their sons.
authors.affiliation: Discipline of Occupational Therapy, Faculty of Health Sciences, The University of Sydney, Sydney, Australia, Institute for Neuroscience and Muscle Research, The Children's Hospital at Westmead, Sydney, Australia. Paulam2@chw.edu.au.
authors.forename: Paula
authors.initials: P
authors.lastname: Bray
authors.forename: Anita C
authors.initials: AC
authors.lastname: Bundy
authors.forename: Monique M
authors.initials: MM
authors.lastname: Ryan
authors.forename: Kathryn N
authors.initials: KN
authors.lastname: North
authors.forename: Anna
authors.initials: A
authors.lastname: Everett
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000523:psychology* / Q000639:trends; D002648:Child; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D020388:Muscular Dystrophy, Duchenne / Q000523:psychology* / Q000534:rehabilitation; D010290:Parents / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D011795:Surveys and Questionnaires / Q000592:standards*