Person: KARADAĞ, BÜLENT TANER
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KARADAĞ
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BÜLENT TANER
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Publication Open Access Childhood interstitial lung disease in Turkey: first data from the national registry(2023-01-01) GÖKDEMİR, YASEMİN; KARADAĞ, BÜLENT TANER; Nayır-Büyükşahin H., EMİRALİOĞLU ORDUKAYA N., KILINÇ SAKALLI A. A., Girit S., Yalçın E., ŞİŞMANLAR EYÜBOĞLU T., ÇOBANOĞLU F. N., Cinel G., Pekcan S., GÖKDEMİR Y., et al.Abstract: The childhood interstitial lung diseases (chILD) Turkey registry (chILD-TR) was established in November 2021 to increase awareness of disease, and in collaboration with the centers to improve the diagnostic and treatment standards. Here, the first results of the chILD registry system were presented. In this prospective cohort study, data were collected using a data‐entry software system. The demographic characteristics, clinical, laboratory, radiologic findings, diagnoses, and treatment characteristics of the patients were evaluated. Clinical characteristics were compared between two main chILD groups ((A) diffuse parenchymal lung diseases (DPLD) disorders manifesting primarily in infancy [group1] and (B) DPLD disorders occurring at all ages [group 2]). There were 416 patients registered from 19 centers. Forty-six patients were excluded due to missing information. The median age of diagnosis of the patients was 6.05 (1.3–11.6) years. Across the study population (n = 370), 81 (21.8%) were in group 1, and 289 (78.1%) were in group 2. The median weight z-score was significantly lower in group 1 (− 2.0 [− 3.36 to − 0.81]) than in group 2 (− 0.80 [− 1.7 to 0.20]) (p < 0.001). When we compared the groups according to chest CT findings, ground-glass opacities were significantly more common in group 1, and nodular opacities, bronchiectasis, mosaic perfusion, and mediastinal lymphadenopathy were significantly more common in group 2. Out of the overall study population, 67.8% were undergoing some form of treatment. The use of oral steroids was significantly higher in group 2 than in group 1 (40.6% vs. 23.3%, respectively; p = 0.040). Conclusion: This study showed that national registry allowed to obtain information about the frequency, types, and treatment methods of chILD in Turkey and helped to see the difficulties in the diagnosis and management of these patients. What is Known: • Childhood interstitial lung diseases comprise many diverse entities which are challenging to diagnose and manage. What is New: • This study showed that national registry allowed to obtain information about the frequency, types and treatment methods of chILD in Turkey and helped to see the difficulties in the diagnosis and management of these patients. Also, our findings reveal that nutrition should be considered in all patients with chILD, especially in A-DPLD disorders manifesting primarily in infancy.Publication Open Access A qualitative study on awareness, attitudes, behaviors and social adaptation of mothers of children with cystic fibrosis(2023-06-01) GÖKDEMİR, YASEMİN; ERDEM ERALP, ELA; ERGENEKON, ALMALA PINAR; KARADAĞ, BÜLENT TANER; KARAVUŞ, MELDA; Ayvaz İ., Karavuş M., Hıdıroğlu S., Taşcan D., Atıcı F., Özyıldırım N., Binatamir R. Y., Gökdemir Y., Erdem Eralp E., Ergenekon A. P., et al.Objectives: Cystic Fibrosis (CF) may affect the whole life of the family and social adaptation is very important for the management. Aim of this study is to evaluate awareness, attitudes, behaviors, and social adaptation of mothers of children with CF. Methods: Our qualitative study was carried out in April 2022 with 11 mothers of children admitted to a CF center in İstanbul, Türkiye. For data collection a semi-structured question guide was applied using in-depth interview technique. Thematic analysis method was used in analysis of the data. The ethics committee approval was obtained. Results: Most mothers noticed the disease in the presence of symptoms such as salty skin, frequent productive coughing, and fever attacks. Majority were not aware of the cause, some even thinking that it could be due to an accident or prolonged delivery. All parents adjusted their whole lives according to their children and their social life was limited after the diagnosis. They abided by hygienic rules, seldom spent time outside home, particularly avoided crowded areas. While most mothers expressed that their family relations were strengthened, and they were supported psychosocially, some mothers could not get the understanding and support they expected. Many of the participants received professional psychological support to cope with this situation. The disease had a negative impact on the education life of children; in addition to that families had difficulties due to the economic burden of the treatment. Majority stated the Covid-19 pandemic did not affect them so much, since their life was already limited. Their advice for the parents of newly diagnosed children were to be strong. Conclusion: CF affects the lives of families in many ways, especially psychosocially and economically. Despite all the difficulties, the mothers could cope with life and became somewhat resilient. Awareness of CF should be raised in society and psychosocial support should be provided to caregivers.