Sociodemographic profiles and age-related differences in comorbidities, sleep, and quality of life of Turkish children with Rett syndrome and their families

Abstract

Objective This study aimed to examine sociodemographic characteristics, comorbid medical conditions, sleep problems, and their impact on quality of life (QoL) in Turkish children with Rett Syndrome (RTT) and their caregivers. A secondary aim was to explore how these features vary by age group: early (0-5), middle (6-11), and late childhood (12-18 years). Methods In this cross-sectional study, 74 children with RTT and their caregivers completed standardized online questionnaires. QoL and sleep were assessed using the PedsQL and Children's Sleep Habits Questionnaire. Participants were grouped by age to examine developmental differences. Results Only 37.8% of the children had developed speech, and most later lost this ability. Independent walking was reported in 43.2%. Epilepsy (71.6%) and gastrointestinal symptoms (56.8%) were common. Parasomnia symptoms significantly more common in the 0 to 5 age group ( p = 0.039). Emotional functioning was lower in younger children ( p = 0.022). Poor sleep quality was associated with worse family relations ( p = 0.032). Conclusion Younger children with RTT experience more emotional and sleep problems. Sleep quality is closely tied to family well-being, suggesting that interventions should address sleep in both children and caregivers.