Caretaker Quality of Life in Rett Syndrome: Disorder Features and Psychological Predictors.

ABSTRACT:

Objective

Rett syndrome is a severe neurodevelopmental disorder affecting approximately one in 10,000 female births. The clinical features of Rett syndrome are known to impact both patients' and caretakers' quality of life in Rett syndrome. We hypothesized that more severe clinical features would negatively impact caretaker physical quality of life but would positively impact caretaker mental quality of life.

Methods

Participants were individuals enrolled in the Rett Natural History Study with a diagnosis of classic Rett syndrome. Demographic data, clinical disease features, caretaker quality of life, and measures of family function were assessed during clinic visits. The Optum SF-36v2 Health Survey was used to assess caretaker physical and mental quality of life (higher sco

SUBMITTER: Killian JT 

PROVIDER: S-EPMC4899118 | biostudies-literature | 2016 May

REPOSITORIES: biostudies-literature