{
  "abstract": "Objectives To describe the implementation and outcomes of a theory- and framework-based model for transdisciplinary follow-up of children with Down syndrome (DS) according to the American Academy of Pediatrics guideline, implemented in newly established Developmental-Behavioral Pediatrics (DBP) Division at one of Turkey’s largest hospitals.Methods Prospective program ran February 2023–February 2024, coordinating follow-up across DBP, pediatric genetics, cardiology, endocrinology, neurology, gastroenterology, rehabilitation, ophthalmology, and otolaryngology clinics. At each DBP visit, children’s medical and developmental status and psychosocial risks were assessed within a holistic, family-centered, ICF-based framework; guideline follow-ups were reviewed and referrals provided. Individualized, home-based early intervention approaches were planned. Data were collected in July 2025 from DBP notes and family interviews.Results Of 2997 new DBP admissions, 49 (1.6%) had DS, 37 were studied; median age at first admission was 8 months (SD 21.4, range 1–103), 59.5% boys. Two-year follow-up, 59.4% remained under observation, 63.6% by a single DBP specialist. While 54% of mothers reported anxiety and need for psychological support, only 45% accessed services. Among children, 75.6% required follow-up in ≥3 organ systems, all per guidelines. Repeated vision screening was performed in 81%, hearing assessment in 37.9%. Physical therapy was received 97.2% before 12 months, cognitive education 86.4% before 18 months, and speech therapy 40.5% before 24 months.Conclusions Model demonstrates that guideline- and theory-based care is feasible and sustainable. Psychological support for families, hearing follow-up and speech therapy access remain critical gaps. Improvement in these areas is key priority for strengthening DS care models.",
  "authors": [
    {
      "affiliations": [
        "Division of Developmental-Behavioral Pediatrics, Department of Pediatrics, Etlik City Hospital, Ankara, Turkey"
      ],
      "name": "Sidika Canan Atasoy"
    },
    {
      "affiliations": [
        "Division of Developmental-Behavioral Pediatrics, Department of Pediatrics, Etlik City Hospital, Ankara, Turkey"
      ],
      "name": "Gulsum Atay"
    }
  ],
  "title": "137 A model program for transdisciplinary follow-up of children with down syndrome in a tertiary center in Turkey",
  "uid": "39748baa-894f-57bb-a86c-478b911f4d8e"
}