Quality of Life in Children With CMT

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J Child Neurol. 2009 Aug 27.

Quality of Life in Children With Charcot-Marie-Tooth Disease.

Burns J, MM, Ouvrier RA.

Sydney Medical School, The University of Sydney; Institute for Neuroscience and

Muscle Research, The Children's Hospital at Westmead, Sydney, Australia.

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.