Browsing by Author "Karadag, B"
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Item RELIABILITY AND VALIDITY OF THE CYSTIC FIBROSIS QUESTIONNAIRE-REVISED FOR CHILDREN AND PARENTS IN TURKEYYuksel, H; Yilmaz, O; Dogru, D; Karadag, B; Unal, F; Quittner, AItem Correlation of Parent Reported Quality of Life in Children with Cystic Fibrosis and Quality of Life in ParentsYilmaz, O; Dogru, D; Karadag, B; Unal, F; Yuksel, HItem Children's ILDs survivors in adulthood: a European StudyManali, ED; Griese, M; Nathan, N; Uzunhan, Y; Borie, R; Michel, K; Schwerk, N; Fijolek, J; Radzikowska, E; Chua, F; Pabary, R; Mogulkoc, N; Mccarthy, C; Kallieri, M; Papaioannou, A; Kiper, N; Vasakova, MK; Lacina, L; Molina-MOLINA, M; Torrent-Vernetta, A; Tsiligiannis, T; Karadag, B; Kokosi, M; Renzoni, EA; Moorsel, CHV; Campo, I; Bendstrup, E; Prior, TS; Prasse, A; Bonella, F; Cottin, V; Diesler, R; Froidure, A; Kolilekas, L; Fotis, L; Douros, K; Kaditis, AG; Jeny, F; Chauveau, S; Nunes, H; Dahbia, A; Mariani, F; van der Vis, J; Groen, K; Eralp, EE; Gokdemir, Y; Kocakaya, D; Yildizeli, SO; Yildizeli, O; Yalçin, E; Emiralioglu, N; Buyuksahin, HN; O'Brien, H; Karcioglu, O; Can, D; Ezircan, A; Ozturk, GK; Ozturk, K; Ocal, N; Yuksel, H; Tongal, N; Safrankova, M; Kourtesi, K; Louvrier, C; Kannengiesser, C; Fabre, A; Legendre, M; Crestani, B; Pohunek, P; Bush, A; Papiris, SItem Comparison of refugee patients with cystic fibrosis and their counterpart children from Turkey during the warYilmaz, AI; Pekcan, S; Eyüboglu, TS; Hangül, M; Arslan, H; Kilinç, AA; Çokugras, H; Arik, E; Keskin, Ö; Özdemir, A; Ersoy, M; Ersoy, A; Köse, M; Özsezen, B; Ünal, G; Ercan, Ö; Girit, S; Oksay, SC; Gökdemir, Y; Karadag, B; Sen, V; Çakir, E; Yüksel, H; Tekin, MN; Aslan, ATSince the outbreak of the Syrian civil war in 2011, the population of Arab refugees in Turkey has rapidly increased. While cystic fibrosis (CF) is believed to be rare among Arabs, recent studies suggest it is underdiagnosed. This study aims to present the demographic, clinical, and genetic characteristics of CF patients among Arab refugees in Turkey. Additionally, a comparison is made between the findings in the National CF Registry 2021 in Turkey (NCFRT) and the refugee CF patient group. The study included refugee patients between the ages of 0 and 18 years who were diagnosed with CF and received ongoing care at pediatric pulmonology centers from March 2011 to March 2021. The study examined demographic information, age at diagnosis, age of diagnosis of patients through CF newborn screening (NBS), presenting symptoms, CF transmembrane conductance regulator (CFTR) mutation test results, sputum culture results, weight, height, and body mass index (BMI) z score. Their results were compared with the NCFRT results. The study included 14 pediatric pulmonology centers and 87 patients, consisting of 46 (52.9%) boys and 41 (47.1%) girls. All of the patients were Arab refugees, with 80 (92%) being Syrian. All the patients were diagnosed in Turkey. The median age at diagnosis of patients was 22.33 (interquartile range, 1-258) months. The median age of diagnosis of patients through NBS was 4.2 (interquartile range, 1-12) months. The median age of older patients, who were unable to be included in the NBS program, was 32.3 (interquartile range, 3-258) months. Parental consanguinity was observed in 52 (59.7%) patients. The mutation that was most frequently found was F508del, which accounted for 22.2% of the cases. It was present in 20 patients, constituting 32 out of the total 144 alleles. There was a large number of genetic variations. CFTR genotyping could not be conducted for 12 patients. These patients had high sweat tests, and their genetic mutations could not be determined due to a lack of data. Compared to NCFRT, refugee patients were diagnosed later, and long-term follow-up of refugee CF patients had significantly worse nutritional status and pseudomonas colonization. Conclusion: Although refugee CF patients have equal access to NBS programs and CF medications as well as Turkish patients, the median age at diagnosis of patients, the median age of diagnosis of patients through NBS, their nutritional status, and Pseudomonas colonization were significantly worse than Turkish patients, which may be related to the difficulties of living in another country and poor living conditions. The high genetic heterogeneity and rare mutations detected in the refugee patient group compared to Turkish patients. Well-programmed NBS programs, thorough genetic studies, and the enhancement of living conditions for refugee patients in the countries they relocate to can have several advantages such as early detection and improved prognosis.What is Known:center dot Children who have chronic diseases are the group that is most affected by wars.center dot The outcome gets better with early diagnosis and treatment in patients with Cystic Fibrosis (CF).What is New:center dot Through the implementation of a newborn screening program, which has never been done in Syria previously, refugee patients, the majority of whom are Syrians were diagnosed with cystic fibrosis within a duration of 4 months. center dot Despite equal access to the newborn screening program and CF medications for both Turkish patients and refugee patients, the challenges of living in a foreign country have an impact on refugees.Item Pediatric dysphagia overview: best practice recommendation study by multidisciplinary expertsUmay, E; Eyigor, S; Giray, E; Saygi, EK; Karadag, B; Kocaaslan, ND; Yuksel, D; Demir, AM; Tutar, E; Tikiz, C; Gurcay, E; Unlu, Z; Celik, P; Akyuz, EU; Mengu, G; Bengisu, S; Alicura, S; Unver, N; Yekteusaklari, N; Uz, C; Uytun, MC; Bagcier, F; Tarihci, E; Akaltun, MS; Sucakli, IA; Cankurtaran, D; Aykin, Z; Aydin, R; Nazli, FBackground Currently, there is no comprehensive and multidisciplinary recommendation study covering all aspects of pediatric dysphagia (PD). This study aimed to generate PD management recommendations with methods that can be used in clinical practice to fill this gap in our country and in the world, from the perspective of experienced multidisciplinary experts. Methods This recommendation paper was generated by a multidisciplinary team, using the seven-step process and a three-round modified Delphi survey via e-mail. First, ten open-ended questions were created, and then detailed recommendations including management, diagnosis, treatment, and follow-up were created with the answers from these questions. Each recommendation item was voted on by the experts as overall consensus (strong recommendation), approaching consensus (weak recommendation) and divergent consensus (not recommended). Results In the 1st Delphi round, a questionnaire of 414 items was prepared based on the experts' responses to ten open-ended questions. In the 2nd Delphi round, 59.2% of these items were accepted as pre-recommendation. In the 3rd Delphi round, 62.6% of 246 items were accepted for inclusion in the proposals. The final version recommendations consisted of 154 items. Conclusions This study includes comprehensive and detailed answers for every problem that could be posed in clinical practice for the management of PD, and recommendations are for all pediatric patients with both oropharyngeal and esophageal dysphagia.Item Reliability and validity of the Cystic Fibrosis Questionnaire-Revised for children and parents in Turkey: cross-sectional studyYuksel, H; Yilmaz, O; Dogru, D; Karadag, B; Unal, F; Quittner, ALThe purpose of study was to translate Cystic Fibrosis Questionnaire-Revised (CFQ-R) into Turkish for children with cystic fibrosis (CF) and evaluate its reliability and validity. This is the first CF-specific health-related quality of life (HRQOL) measure validated in a Muslim country. Fifty-one children aged 6-13 years treated at four centers in Turkey and 30 parents participated in this cross-sectional study. Demographic characteristics and disease severity parameters were recorded for all participants. All participants completed the parent or child versions of CFQ-R and KINDL questionnaires at enrollment. Reliability and construct validity analysis were carried out. Both children and parents endorsed a range of responses, with no evidence of floor or ceiling effects. Item-to-total correlations indicated that most items were more highly correlated with their intended scale than competing scales. Good internal consistency was found for majority of child and parent scales. CFQ-R scales correlated significantly with clinical indices of disease severity. Good evidence of convergent validity with a generic HRQOL scale was found. Turkish versions of CFQ-R Child and Parent instruments have demonstrated adequate reliability and validity and can be utilized in clinical trials or integrated into clinical evaluation and follow-up of Turkish children with CF.Item Epidemiological, Clinical, and Laboratory Features of Children With COVID-19 in TurkeyKarbuz, A; Akkoc, G; Demirdag, TB; Ciftdogan, DY; Ozer, A; Cakir, D; Torun, SH; Kepenekli, E; Erat, T; Dalgic, N; Ilbay, S; Karaaslan, A; Erdeniz, EH; Aygun, FD; Bozdemir, SE; Hatipoglu, N; Emiroglu, M; Bal, ZS; Ciftci, E; Bayhan, GI; Aydin, ZGG; Demir, SO; Kilic, O; Hacimustafaoglu, M; Okur, DS; Sen, S; Yahsi, A; Akturk, H; Cetin, B; Sutcu, M; Kara, M; Uygun, H; Kara, TT; Korukluoglu, G; Akgun, O; èstundag, G; Mis, MD; Sali, E; Kaba, O; Yakut, N; Kilic, O; Kanik, MK; Cetin, C; Dursun, A; Cicek, M; Kockuzu, E; Sevketoglu, E; Alkan, G; Ozenen, GG; Ince, E; Baydar, Z; Ozkaya, AK; Ovali, HF; Tekeli, S; Celebi, S; Cubukcu, B; Bal, A; Khalilova, F; Kose, M; Hatipoglu, HU; Dalkiran, T; Turgut, M; Altas, AB; Duru, HNS; Aksay, A; Saglam, S; Yanartas, MS; Ergenc, Z; Akin, Y; Kar, YD; Sahin, S; Tuteroz, SK; Bilen, NM; Ozdemir, H; Senoglu, MC; Kucukalioglu, BP; Besli, GE; Kara, Y; Turan, C; Demirtas, BS; Celikyurt, A; Cosgun, Y; Elevli, M; Sahin, A; Oguz, SB; Somer, A; Karadag, B; Demirhan, R; Dagi, HT; Kurugol, Z; Taskin, EC; Sahiner, A; Yesil, E; Keles, YE; Sarikaya, R; Eralp, EE; Ozkinay, F; Konca, HK; Yilmaz, S; Gokdemir, Y; Arga, G; Ozen, S; Coksuer, F; Vatansever, G; Tezer, H; Kara, AObjectives: The aim of this study is to identify the epidemiological, clinical, and laboratory features of coronavirus disease 2019 (COVID-19) in children. Methods: A retrospective study was conducted by pediatric infectious disease specialists from 32 different hospitals from all over Turkey by case record forms. Pediatric cases who were diagnosed as COVID-19 between March 16, 2020, and June 15, 2020 were included. Case characteristics including age, sex, dates of disease onset and diagnosis, family, and contact information were recorded. Clinical data, including the duration and severity of symptoms, were also collected. Laboratory parameters like biochemical tests and complete blood count, chest X-ray, and chest computed tomography (CT) were determined. Results: There were 1,156 confirmed pediatric COVID-19 cases. In total, male cases constituted 50.3% (n = 582) and females constituted 49.7% (n = 574). The median age of the confirmed cases was 10.75 years (4.5-14.6). Of the total cases, 90 were younger than 1 year of age (7.8%), 108 were 1-3 years of age (9.3%), 148 were 3-6 years of age (12.8%), 298 were 6-12 years of age (25.8%), 233 were 12-15 years of age (20.2%), and 268 cases were older than 15 years of age (23.2%). The most common symptom of the patients at the first visit was fever (50.4%) (n = 583) for a median of 2 days (IQR: 1-3 days). Fever was median at 38.4 degrees C (38.0-38.7 degrees C). The second most common symptom was cough (n = 543, 46.9%). The other common symptoms were sore throat (n = 143, 12.4%), myalgia (n = 141, 12.2%), dyspnea (n = 118, 10.2%), diarrhea (n = 112, 9.7%), stomachache (n = 71, 6.1%), and nasal discharge (n = 63, 5.4%). When patients were classified according to disease severity, 263 (22.7%) patients were asymptomatic, 668 (57.7%) patients had mild disease, 209 (18.1%) had moderate disease, and 16 (1.5%) cases had severe disease. One hundred and forty-nine (12.9%) cases had underlying diseases among the total cases; 56% of the patients who had severe disease had an underlying condition (p < 0.01). The need for hospitalization did not differ between patients who had an underlying condition and those who do not have (p = 0.38), but the need for intensive care was higher in patients who had an underlying condition (p < 0.01). Forty-seven (31.5%) of the cases having underlying conditions had asthma or lung disease (38 of them had asthma). Conclusions: To the best of our knowledge, this is one of the largest pediatric data about confirmed COVID-19 cases. Children from all ages appear to be susceptible to COVID-19, and there is a significant difference in symptomatology and laboratory findings by means of age distribution.