Quality of life in children with Charcot-Marie-Tooth disease

J Child Neurol. 2010 Mar;25(3):343-7. doi: 10.1177/0883073809339877. Epub 2009 Aug 27.

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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Age Factors
  • Body Size
  • Charcot-Marie-Tooth Disease / psychology*
  • Child
  • Child, Preschool
  • Ethnicity / psychology
  • Humans
  • Pain / pathology
  • Parents / psychology
  • Quality of Life*
  • Sex Factors
  • Surveys and Questionnaires