Awareness, perceptions, and practices regarding transition to adult care for nephropathic cystinosis in Türkiye: a nationwide cross-sectional survey of pediatric nephrologists
Year: 2026
Type: article
Study design: Observational Study
Abstract: Background Nephropathic cystinosis is a rare multisystem disorder in which transition from pediatric to adult care is particularly a vulnerable period because of lifelong treatment demands and the need for sustained multidisciplinary follow-up. We aimed to assess awareness, perceptions, and self-reported transition practices among pediatric nephrologists in Türkiye caring for patients with nephropathic cystinosis. Methods We conducted a nationwide descriptive cross-sectional web-based survey of pediatric nephrologists in Türkiye who had longitudinally followed at least one patient with nephropathic cystinosis. A 59-item questionnaire covering awareness, perceptions, and self-reported practices was administered via Google Forms, and responses were analysed descriptively at the item level. Results In this nationwide descriptive cross-sectional web-based survey, 48 pediatric nephrologists participated. Respondents worked mainly in university hospitals (47.9%) and training and research hospitals (39.6%) and had a median of 14 years of pediatric nephrology experience (IQR 6–17). Although 66.7% distinguished transition from transfer, familiarity with cystinosis-specific transition models was limited; only 16.7% had ever applied a structured model and 8.3% reported a written transition plan in their center. The most frequently perceived challenges were treatment non-adherence (89.6%) and disruption of multidisciplinary follow-up (87.5%). Most respondents reported marked differences between pediatric and adult services, and the median recommended age for initiating transition planning was 17.5 years (IQR 17–18). Overall, 91.7% supported the development of a national transition model (58.3% considered it definitely necessary and 33.3% necessary but difficult to implement without external support). Conclusions Among pediatric nephrologists in Türkiye, awareness of transition-related risks in nephropathic cystinosis was high, but structured transition practices were uncommon and initiation of transition planning was generally recommended at a later age than suggested by current guidance. These findings indicate an implementation gap and support the development of a feasible national transition framework that can be adapted to local resources.
Authors: Yeşim Özdemir Atikel, Sevcan A. Bakkaloğlu, Alev Yılmaz, Aslı Çelebi Tayfur, Aslı Kavaz Tufan, Aslıhan Kara, Ayşe Seda Pınarbaşı, Aysun Çaltık Yılmaz, Bahriye Atmış, Bedriye Nuray Alpman, Begüm Avcı, Burcu Yazıcıoğlu, Ece Demirci Bodur, Emre Leventoğlu, Erkin Serdaroğlu, Esra Nagehan Akyol Önder, Hülya Nalçacıoğlu, Kenan Yılmaz, Okan Akacı, Önder Yavaşcan, Özde Nisa Türkkan, Sare Gülfem Özlü, Seçil Arslansoyu Çamlar, Serra Sürmeli Döven, Songül Yılmaz, Yılmaz Tabel, Rezan Topaloğlu
Institutions: Eskişehir City Hospital, Sağlık Bilimleri Üniversitesi, Gazi University, Istanbul University-Cerrahpaşa, Ankara Etlik City Hospital, Istanbul University, Bolu Abant İzzet Baysal University, Eskişehir Osmangazi University, Fırat University, Cukurova University, Başkent University, Konya City Hospital, Dr. Behçet Uz Çocuk Hastalıkları Hastanesi, Aksaray University, Ondokuz Mayıs University, Şanlıurfa Mehmet Akif İnan Eğitim ve Araştırma Hastanesi, S.B.Ü. Bursa Yüksek İhtisas Eğitim ve Araştırma Hastanesi, Istanbul Medipol University, Marmara University, Ankara Yıldırım Beyazıt University, İzmir Şehir Hastanesi, Mersin Üniversitesi, Ankara University, Inonu University, Hacettepe University
Language: English
Subfield: Speech and Hearing
Field: Health Professions
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $2,990
OpenAlex ID: W7204227096
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