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Öğe After the earthquake: Unmet needs in people with cystic fibrosis in Turkiyemulticenter study(Elsevier, 2025) Karabulut, Seyda; Sen, Velat; Ozsezen, Beste; Ozdemir, Ali; Hangul, Melih; Savas, Suat; Sen, Hadice SelimogluBackground: We aimed to assess unmet needs of pwCF in the earthquake zone by income level. Methods: Following the February 6, 2023 Earthquake in Turkiye, the shorter version of the 'Your Current Life Situation' (YCLS) survey was adapted for post-earthquake conditions. The adapted YCLS was administered through face-to-face interviews at participants in seven earthquake-affected provinces to determine the insecurity areas and unmet needs in pwCF. Parents completed the survey for those pwCF under 18 years old; those over 18 completed it themselves. Results: Among 255 participants, 91.7% (n=234) had incomes below the poverty threshold and 71.8% (n=183) below the hunger threshold. Post-earthquake, 69% (n=176) lived in overcrowded conditions and 37.6% (n=96) relocated to temporary housing. Under these challenging circumstances, 34.5% (n=88) of pwCF experienced disruptions in routine visits, and 20.8% (n=53) reported disruption in daily CF care routine. Financial and food insecurities were prevalent, with 77.3% (n=197) and 53.3% (n=136) of participants affected, respectively. The potential impact of earthquake-induced relocation on the participants' insecurity status was analyzed. Among those who relocated, financial, transportation, and housing insecurity appeared to be more prevalent (p<0.001). Conclusion: This is the first study to analyze association between income level and unmet needs among pwCF living in earthquake-affected zone. The study revealed significant financial and food insecurity among pwCF in these areas. The findings emphasize the need for disaster-specific emergency action plans to address these vulnerabilities, ensuring access to healthcare and basic needs during crises.Öğe Comparison of clinical features of cystic fibrosis patients eligible but not on CFTR modulators to ineligible for CFTR modulators(Wiley, 2024) Buyuksahin, Halime Nayir; Emiralioglu, Nagehan; Yalcin, Ebru; Sen, Velat; Sen, Hadice Selimoglu; Arslan, Huseyin; Baskan, Azer KilicIntroduction: Cystic fibrosis transmembrane conductance regulator (CFTR) modulator drugs target the underlying defect and improve CFTR function. They are a part of standard care in many countries, but not all patients are eligible for these drugs due to age and genotype. Here, we aimed to determine the characteristics of non-eligible patients for CFTR modulators in the CF registry of Turkey (CFRT) to highlight their clinical needs. Methods: This retrospective cohort study included CF patient data from the CFRT in 2021. The decision of eligibility for the CFTR modulator was determined according to the 'Vertex treatment-Finder' on the Vertex (R) website. Demographic and clinical characteristics of patients were compared between eligible (group 1) and ineligible (group 2) groups for CFTR modulators. Results: Among the study population (N = 1527), 873 (57.2%) were in group 1 and 654 (42.8%) were in group 2. There was no statistical difference between groups regarding sex, meconium ileus history, diagnoses via newborn screening, FEV1 z-score, CF-associated complications, organ transplant history, and death. Patients in group 2 had a higher incidence of pancreatic insufficiency (87.7% vs. 83.2%, p = .010), lower median height z-scores (-0.87 vs. -0.55, p < .001), lower median body mass index z-scores (-0.65 vs. -0.50, p < .001), longer days receiving antibiotics due to pulmonary exacerbation (0 [interquartile range, IQR: 0-2] vs. 0 [IQR: 0-7], p = 0.001), and more non-invasive ventilation support (2.6% vs. 0.9%, p = 0.008) than patients in group 1. Conclusion: The ineligible group had worse clinical outcomes than the eligible group. This highlights their need for life-changing drugs to improve clinical outcomes.Öğe Eligibility of Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) modulator therapies: cohort of cystic fibrosis registry of Türkiye(Turkish J Pediatrics, 2025) Erdal, Meltem Akgul; Buyuksahin, Halime Nayir; Sen, Velat; Kilinc, Ayse Ayzit; Cokugras, Haluk; Dogan, Guzide; Yilmaz, Asli ImranBackground. Cystic Fibrosis Transmembrane Conductance Regulator (CFTR) variants are essential for determining eligibility for CFTR modulator drugs (CFTRms). In contrast to Europe and the USA, the treatment eligibility profile of cystic fibrosis (CF) patients in T & uuml;rkiye is not known. In this study we aimed to determine the eligibility of CF patients in T & uuml;rkiye for the CFTRms. Methods. The Cystic Fibrosis Registry of T & uuml;rkiye (CFrT) data was used to determine the age of patients in the year 2021 and the genetic variants they were carrying. Age- and CFTR-variant appropriate modulator therapies were determined using the Vertex (R) algorithm. Results. Among a total of 1930 registered patients, CTFR gene analysis was performed on a total of 1841 (95.4%) patients. Mutations were detected in one allele in 10.7% (198 patients), and in both alleles in 79% (1455 patients) of patients. A total of 855 patients (51.7% for whom at least 1 mutation was detected) were eligible for the drugs. The most appropriate drug among genotyped patients was found to be elexacaftor/tezacaftor/ivacaftor for 486 patients (26.4%), followed by ivacaftor for 327 patients (17.7%) and lumacaftor/ivacaftor for 42 patients (2%). Conclusions. Only half of patients registered in CFrT were eligible for CFTRms, which is a significant difference from the CFTR variant profile seen in USA and Europe. However, access to treatment is hampered for some patients whose genes are not analysed. Further studies in CF populations, where rare mutations are relatively more common, will contribute to the field of CFTR modulator treatments for such rare mutations.Öğe Evaluation of social determinants of health in people with cystic fibrosis living at the affected areas of devastating earthquake in Turkey: multicenter-study(European Respiratory Soc Journals Ltd, 2024) Karabulut, Seyda; Sen, Velat; Ozsezen, Beste; Ozdemir, Ali; Savas, Suat; Sen, Hadice Selimoglu; Inal, Gaye[No abstract available]Öğe Factors associated with pulmonary function decline of patients in the cystic fibrosis registry of Turkey: A retrospective cohort study(Wiley, 2024) Emiralioglu, Nagehan; Cakir, Banu; Sertcelik, Ahmet; Yalcin, Ebru; Kiper, Nural; Sen, Velat; Altintas, Derya UfukBackground: The decline in pulmonary function is a predictor of disease progression in patients with cystic fibrosis (CF). This study aimed to determine the decline rate of percent predicted forced expiratory volume in 1 s (ppFEV1) based on the data of the CF Registry of Turkey. The secondary aim was to investigate the risk factors related to the decline in ppFEV1. Methods: A retrospective cohort study of CF patients over 6 years old, with pulmonary function data over at least 2 years of follow-up was extracted from the national CF registry for years 2017-2019. Patients were classified according to disease severity and age groups. Multivariate analysis was used to predict the decline in ppFEV1 and to investigate the associated risk factors. Results: A total of 1722 pulmonary function test results were available from 574 patients over the study period. Mean diagnostic age was older and weight for age, height for age, and body mass index z scores were significantly lower in the group of ppFEV1 < 40, while chronic Pseudomonas aeruginosa (p < .001) and mucoid P. aeruginosa colonization (p < .001) were significantly higher in this group (p < .001). Overall mean annual ppFEV1 decline was -0.97% (95% confidence interval [CI] = -0.02 to -1.92%). The mean change of ppFEV1 was significantly higher in the group with ppFEV1 >= 70 compared with the other (ppFEV1 < 40 and ppFEV1: 40-69) two groups (p = .004). Chronic P. aeruginosa colonization (odds ratio [OR] = 1.79 95% CI = 1.26-2.54; p = .01) and initial ppFEV1 >= 70 (OR = 2.98 95% CI = 1.06-8.36), p = .038) were associated with significant ppFEV1 decline in the whole cohort. Conclusions: This data analysis recommends close follow-up of patients with normal initial ppFEV1 levels at baseline; advocates for early interventions for P. aeruginosa; and underlines the importance of nutritional interventions to slow down lung disease progression.Öğe Flexible bronchoscopy findings in lung amoebiasis: a case report(Drunpp-Sarajevo, 2012) Kelekci, Selvi; Sen, Velat; Tuncel, Tuba; Sen, Hadice Selimoglu; Cicek, Muttalip; Erge, Duygu; Gurkan, M. FuatThe protozoon Entamoeba histolytica is an agent of human amoebiasis. Amoebiasis is common around the world, especially in tropical and subtropical regions. About 90% of infections are asymptomatic, while the remaining 10% are characterized by dysentery and abscesses observable in the liver or other organs. The liver is the organ most commonly affected by extraintestinal amoebiasis. Pulmonary and invasive amoebiasis is seen in 2-3% of patients, but isolated pulmonary amoebiasis is rarely seen in the pediatric age group. In this study, a 14 year old male patient diagnosed with isolated pulmonary amoebiasis is presented. Diagnosis was based on the detection of trophozoites through direct examination of bronchoalveolar lavage fluid obtained by flexible bronchoscopy, and the presence of amoebic IgG in the blood. Three weeks of metronidazole combined with antimicrobial treatment significantly improved the patient's clinical and radiologic findings. The aim of this report was to present a rare case of childhood pulmonary amoebiasis without liver or other organ involvement and to demonstrate the efficacy of flexible bronchoscopy for diagnosis.Öğe Geographical barriers to timely diagnosis of cystic fibrosis and anxiety level of parents during newborn screening in Turkey(Wiley, 2021) Gokdemir, Yasemin; Eyuboglu, Tugba Sismanlar; Emiralioglu, Nagehan; Er, Berrin; Sen, Velat; Pekcan, Sevgi; Ergenekon, Almala PinarBackground Despite the availability of cystic fibrosis (CF) screening countrywide, diagnostic delay is still a crucial issue. The objectives of this study were to explore the stages of the NBS process, determine the risk factors associated with diagnostic delay and evaluate parent anxiety and experience throughout the process. Methods This is a multicenter cross-sectional study. A questionnaire was completed by parents of newborns diagnosed with CF via NBS in 17 centers. Socio-demographic characteristics, parent knowledge and experiences related to NBS, sweat test availability in the region of residence, and time to the definitive CF diagnosis were assessed through this questionnaire. Parents' anxiety levels were evaluated through the State-Trait Anxiety Inventory scales 1 and 2. Delayed diagnosis (DD) was defined as a definite CF diagnosis beyond the 8th week of life. Predictors of delayed CF diagnosis were evaluated by univariate and multivariate analysis. Results A total of 220 CF patients diagnosed via NBS were enrolled; 82 (37.3%) babies had DD. Multivariable analysis indicated that residence in the Southeast Anatolia region of Turkey (OR = 10.79, 95% CI = 2.37-49.2) was associated with a higher incidence of DD compared with other regions in Turkey. Of the total, 216 (98.1%) of the caregivers regarded the NBS program as useful and 180 (82%) reported high anxiety levels. Conclusion The organization of newborn screening should take into account regional and socio-cultural characteristics to improve the early diagnosis of CF and also reduce the anxiety level of parents.Öğe Hospital-based multicenter study in Turkey: The atopic effect on the progress of viral pneumonia(European Respiratory Soc Journals Ltd, 2015) Bahceci, Semiha; Can, Demet; Girit, Saniye; Catal, Ferhat; Sen, Velat; Pekcan, Sevgi; Yuksel, Hasan[Abstract Not Available]
