What question did this study set out to answer?

The study investigates the impact of sociodemographic factors, comorbidities, and sleep issues on quality of life in children with Rett Syndrome, focusing on age-related differences.

February 25, 2026

Sociodemographic Profiles and Age-Related Differences in Comorbidities, Sleep, and Quality of Life of Turkish Children with Rett Syndrome and Their Families

Puntos clave

The study investigates the impact of sociodemographic factors, comorbidities, and sleep issues on quality of life in children with Rett Syndrome, focusing on age-related differences.
Conducted a cross-sectional study with 77 children diagnosed with Rett Syndrome and their caregivers.
Participants completed questionnaires assessing sleep issues (CSHQ) and quality of life (PedsQL).
Children were divided into three age groups: early (0-5), middle (6-11), and late childhood (12-18) to analyze developmental differences.
37.8% of children developed speech, but most lost this ability over time.
43.2% of children were reported to walk independently.
71.6% experienced epilepsy, and 56.8% had gastrointestinal symptoms.
48.6% had sleep problems, with younger children showing more parasomnia symptoms (p=0.039).
Emotional functioning was lower in younger children (p=0.022), and poor sleep quality negatively affected family relations (p=0.032).

Resumen

Objective: This study aimed to examine sociodemographic characteristics, comorbid medical conditions, sleep problems, and their impact on quality of life 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, 77 children with RTT and their caregivers completed standardized online questionnaires. Quality of life and sleep were assessed using the PedsQL and CSHQ. 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. Sleep problems were identified in 48.6% of children, with parasomnia symptoms significantly more common in the 0–5 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). Conclusions: 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.

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