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    Long-term Home Mechanical Ventilation of Children in İstanbul
    (AVES, 2025) Yanaz, Mürüvvet; Ünal, Füsun; Hepkaya, Evrim; Yazan, Hakan; Can Oksay, Sinem; Köstereli, Ebru; Yılmaz Yeğit, Cansu; Başkan, Azer Kılıç; Onay, Zeynep Reyhan; Gulieva, Aynur; Soyyiğit, Aslınur; Kalyoncu, Mine; Küçük, Hanife Büşra; Ayhan, Yetkin; Ergenekon, Almala Pınar; Atağ, Emine; Uzuner, Selçuk; İkizoğlu, Nilay Baş; Kılınç, Ayşe Ayzıt; Ay, Pınar; Eralp, Ela Erdem; Gökdemir, Yasemin; Öktem, Sedat; Çakır, Erkan; Girit, Saniye; Uyan, Zeynep Seda; Çokuğraş, Haluk; Ersu, Refika; Karadağ, Bülent; Karakoç, Fazilet
    OBJECTIVE: The aims of this multi-center study were to describe the characteristics of children receiving long-term home mechanical ventilation (HMV) in İstanbul and to compare the patients receiving non-invasive and invasive ventilation. MATERIAL AND METHODS: This cross-sectional multicenter study included all children receiving long-term HMV followed by admission to six tertiary hospitals. The data were collected between May 2020 and May 2021. Demographic data and data regarding HMV were collected from the patient charts. RESULTS: The study included 416 participants. The most common diagnoses were neuromuscular (35.1%) and neurological diseases (25.7%). Among the patients, 49.5% (n = 206) received non-invasive ventilation (NIV), whereas 50.5% (n = 210) received invasive ventilation. The median age at initiation was significantly younger in the invasive ventilation group than in the NIV group (10 vs. 41 months, P < 0.001). Most subjects in the NIV group (81.1%) received ventilation support only during sleep, whereas most subjects in the invasive ventilation group (55.7%) received continuous ventilator support (P < 0.001). In addition to ventilation support, 41.9% of the subjects in the invasive ventilation group and 28.6% in the NIV group received oxygen supplementation (P = 0.002). Within the last year, 59.1% (n = 246) of the subjects were hospitalized. The risk factors for hospitalization were invasive ventilation, continuous ventilatory support, oxygen supplementation, tube feeding, and swallowing dysfunction (P = 0.002, 0.009, <0.001, <0.001 and <0.001 respectively). CONCLUSION: Despite the increasing use of NIV in most studies, half of the study population received invasive ventilation. Patients receiving invasive ventilation were more likely to require continuous ventilator support and oxygen supplementation and were at increased risk of hospitalization. © 2025 The Author.
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    Long-term outcomes of standardized training for caregivers of children with tracheostomies: The IStanbul PAediatric Tracheostomy (ISPAT) project
    (Wiley, 2024) Bilgin, Gulay; Unal, Fusun; Yanaz, Muruvvet; Baskan, Azer K. I. L. I. C.; Uzuner, Selcuk; Ayhan, Yetkin; Onay, Zeynep Reyhan
    Background and Objectives: Children with tracheostomies are at increased risk of tracheostomy-related complications and require extra care. Standardized training programs for caregivers can improve tracheostomy care and reduce complications. In this study, we compared caregiver knowledge and skill scores after a standardized theoretical and practical training program on tracheostomy care (IStanbul PAediatric Tracheostomy (ISPAT) project) immediately and 1 year post-training and evaluated how this training affected the children's clinical outcomes.Materials and Methods: We included 32 caregivers (31 children) who had received standardized training a year ago and administered the same theoretical and practical tests 1 year after training completion. We recorded tracheostomy-related complications and the number and reasons for admission to the healthcare centers. All data just before the training and 1 year after training completion were compared.Results: After 1 year of training completion, the median number of correct answers on the theoretical test increased to 16.5 from 12 at pretest (p < 0.001). Compared with pretest, at 1-year post-training practical skills assessment scores, including cannula exchange and aspiration, were significantly higher (both p < 0.001) and mucus plug, bleeding, and stoma infection reduced significantly (p = 0.002, 0.022, and 0.004, respectively). Hands-on-training scores were better than pretest but declined slightly at 1 year compared to testing immediately after training. Emergency admission decreased from 64.5% to 32.3% (p = 0.013). Hospitalization decreased from 61.3% to 35.5% (p = 0.039).Conclusion: Our findings indicate that caregiver training can lead to a persistent increase in knowledge and skill for as long as 1 year, as well as improvements in several measurable outcomes, although a slight decrease in scores warrants annual repetitions of the training program.