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 (RTT). In 2021, following purposive sampling, recorded interviews were conducted with parents of individuals with a confirmed MECP2 mutation in the Australian RTT database (n = 31). Interview questions covered experiences of oral problems, the impacts of their daughter's oral health on other aspects of her life and on the lives of others, and on the family's quality of life. Directed content analysis was conducted. Seven domains were identified around the impacts of oral health on the child- discomfort, pain, eating, activities of daily living, emotional well-being, social well-being, and provision of services- affecting impacts on the patient. Five domains related to impacts on the family- emotions, activities, family function, conflict, and morale and self-efficacy to facilitate oral healthcare. The findings of this study pave the way for developing targeted OHRQOL measures for patients with RTT to understand and measure oral health impacts.