Citation:
Strugnell A, Leonard H, Epstein A, Downs J. Using directed-content analysis to identify a framework for understanding quality of life in adults with Rett syndrome. Disabil Rehabil. 2020;42(26):3800-7.
Keywords:
Rett syndrome; neurodevelopmental disability; qualitative research; quality of life
Abstract:
Rett syndrome (RTT) is a rare neurodevelopmental disorder mainly affecting females and is caused by a mutation in the MECP2 gene. Recent research identified the domains of quality of life (QOL) important for children with RTT but there has been no investigation of domains important for adults. This qualitative study explored QOL in adults with RTT and compared domains with those previously identified for children.
Using directed-content analysis to identify a framework for understanding quality of life in adults with Rett syndrome
Rett syndrome (RTT) is a rare neurodevelopmental disorder mainly affecting females and is caused by a mutation in the MECP2 gene. Recent research identified the domains of quality of life (QOL) important for children with RTT but there has been no investigation of domains important for adults. This qualitative study explored QOL in adults with RTT and compared domains with those previously identified for children.