Clinical severity and quality of life in children and adolescents with Rett syndrome.

ABSTRACT:

Objective

The clinical features and genetics of Rett syndrome (RTT) have been well studied, but examination of quality of life (QOL) is limited. This study describes the impact of clinical severity on QOL among female children and adolescents with classic RTT.

Methods

Cross-sectional and longitudinal analyses were conducted on data collected from an NIH-sponsored RTT natural history study. More than 200 participants from 5 to 18 years of age with classic RTT finished their 2-year follow-up at the time of analysis. Regression models after adjustment for their MECP2 mutation type and age at enrollment were used to examine the association between clinical status and QOL.

Results

Severe clinical impairment was highly associated with poor physical QOL, but worse motor func

SUBMITTER: Lane JB 

PROVIDER: S-EPMC3233210 | biostudies-literature | 2011 Nov

REPOSITORIES: biostudies-literature