Exploring Oral Health Related Quality of Life in Rett Syndrome Using Directed Content Analysis

No validated oral health-related quality of life (OHRQOL) instrument currently exists for those with severe intellectual and developmental disabilities and who communicate non-verbally. This qualitative study aimed to explore the domains that were important to the oral health-related quality of life in individuals with Rett syndrome.

Citation:
Lai YYL, Downs JA, Leonard HM, Walsh LJ, Zafar S. Exploring Oral Health Related Quality of Life in Rett Syndrome Using Directed Content Analysis. Am J Med Genet Part A. 2025.

Keywords:
Rett syndrome; developmental disabilities; health‐related quality of life; intellectual disability; oral health; quality of life

Abstract:
No validated oral health-related quality of life (OHRQOL) instrument currently exists for those with severe intellectual and developmental disabilities and who communicate non-verbally. This qualitative study aimed to explore the domains that were important to the oral health-related quality of life in individuals with Rett syndrome.