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Neuropediatrics
DOI: 10.1055/a-2816-9612
Original Article

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

Authors

  • Ayfer Arduç Akçay

    1   School of Medicine, Department of Child Neurology, Koç University, Istanbul, Turkey (Ringgold ID: RIN52979)

  • Gaye Türkmen Noyan 

    2   Department of Child and Adolescent Psychiatry, Ümraniye Eğitim Ve Araştırma Hastanesi, Istanbul, Turkey (Ringgold ID: RIN147021)

  • İlay Çalışkan

    1   School of Medicine, Department of Child Neurology, Koç University, Istanbul, Turkey (Ringgold ID: RIN52979)
    3   Department of Pathology, Division of Neuropathology, University of California San Francisco School of Medicine, San Francisco, United States (Ringgold ID: RIN12224)

  • Belgin Konakçı

    4   Koç Üniversitesi Hastanesi, Istanbul, Turkey (Ringgold ID: RIN587267)

  • Sidar Copur

    5   Scool of Medicine, Koc University, Istanbul, Turkey

  • Tuba Mutluer

    6   Department of Child and Adolescent Psychiatry, Akdeniz University Faculty of Medicine, Antalya, Turkey (Ringgold ID: RIN64032)
    7   Neuroscience PhD Program, Koç University Graduate School of Health Sciences, Istanbul, Turkey (Ringgold ID: RIN299122)
Further Information
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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.



Publication History

Received: 16 October 2025

Accepted after revision: 18 February 2026

Accepted Manuscript online:
23 February 2026

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