title: Quality of life in children with Charcot-Marie-Tooth disease.
abstract: The authors studied the health-related quality of life of children aged 5 to 18 years with Charcot-Marie-Tooth disease of varying types and severity and compared it with the general pediatric population. To capture and compare the quality-of-life data across a broad range of ages, the Child Health Questionnaire was completed by parents of 127 children with Charcot-Marie-Tooth disease. Affected children exhibited lower physical, psychological, and social well-being than the general pediatric population, with subsequent worsening of many domains with age. The type of Charcot-Marie-Tooth disease influenced some physical and behavioral quality-of-life domains, while gender, body size, and ethnicity did not. Parent characteristics had generally little impact on the reporting of their child's quality of life, although parents with Charcot-Marie-Tooth disease reported higher bodily pain in their children than those without. Overall, quality of life is negatively affected by the presence and severity of Charcot-Marie-Tooth disease in childhood.
authors.affiliation: Discipline of Paediatrics and Child Health, Sydney Medical School, The University of Sydney, The Children's Hospital at Westmead, Sydney, New South Wales, Australia. Joshuab2@chw.edu.au
authors.forename: Joshua
authors.initials: J
authors.lastname: Burns
authors.forename: Monique M
authors.initials: MM
authors.lastname: Ryan
authors.forename: Robert A
authors.initials: RA
authors.lastname: Ouvrier
mesh_terms: D000293:Adolescent; D000367:Age Factors; D049628:Body Size; D002607:Charcot-Marie-Tooth Disease / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D005006:Ethnicity / Q000523:psychology; D006801:Humans; D010146:Pain / Q000473:pathology; D010290:Parents / Q000523:psychology; D011788:Quality of Life; D012737:Sex Factors; D011795:Surveys and Questionnaires