Person: GÖKDEMİR, YASEMİN
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GÖKDEMİR
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YASEMİN
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Publication Open Access Improvements in body mass index of children with cystic fibrosis following implementation of a standardized nutritional algorithm: A quality improvement project(2023-03-01) GÖKDEMİR, YASEMİN; ERDEM ERALP, ELA; ERGENEKON, ALMALA PINAR; YILMAZ YEĞİT, CANSU; KARADAĞ, BÜLENT TANER; GÖKDEMİR Y., ERDEM ERALP E., ERGENEKON A. P., YILMAZ YEĞİT C., Yanaz M., Mursaloglu H., Uzunoglu B., Kocamaz D., Tastan G., Filbrun A., et al.BackgroundA collaboration between the University of Michigan (UM) Cystic Fibrosis Center (CFC) and Marmara University (MU) CFC was initiated in MU through conducting Quality Improvement projects (QIP). The global aim was to improve nutritional status of children with CF (cwCF), with a specific aim to increase the mean BMI percentile (BMIp) for cwCF by 10 percentile points in 12 months. MethodsBody mass index (BMI) percentiles of cwCF were categorized as: nutritionally adequate (BMIp >= 50%); at risk (BMIp 25%-49%); urgently at risk (BMIp 10%-25%); critically at risk (BMIp < 10%). Appropriate interventions were made according to BMIp category every three months. Forced expiratory volume in one-second percent predicted (FEV1pp), and health-related quality of life (HRQoL) were evaluated. ResultsOne hundred and eight-two cwCF with a mean age of 9.1 +/- 4.3 years were included in the project. Baseline BMIp increased from 25.6 to 37.2 at the 12th month (p < 0.001). In the critically at-risk group BMIp increased from 3.6 to 20.5 (p < 0.001), in the urgently at risk group from 15.9 to 30.8 (p < 0.001), in the at risk group from 37.0 to 44.2 (p < 0.079) and in the nutritionally adequate group the increase was from 66.8 to 69.5 (p < 0.301). FEV1pp also improved significantly, from 81.3 +/- 20.6 to 85.9 +/- 20.8 (p < 0.001). Physical functioning, eating problems, and respiratory symptoms domains of the HRQoL evaluation improved (p < 0.05). ConclusionThis project has led to significant improvements in BMIp, FEV1pp and HRQoL of cwCF; similar projects could easily be implemented by centers in other developing countries.Publication Open Access Collaboration between two CF centers; one in USA and one in Turkey before and during CoV2 pandemic(2022-10-01) GÖKDEMİR, YASEMİN; ERDEM ERALP, ELA; Nasr S. Z., Gökdemir Y., Erdem E., Karakoc F., Ergenekon P., Tapley C., Dagher S., Bouma S., Coşkun Ö. K., Kocamaz D., et al.To address the discrepancy in the quality of care and outcomes between cystic fibrosis centers (CFCs) in high-income countries and limited resources countries (LRCs), a collaboration between our team at the University of Michigan CFC (UMCFC) and a CF center in Turkey (Marmara University CFC [MUCFC], Istanbul) was established. The collaboration included evaluation of all aspects of care and initiation of quality improvement (QI) measures. Teaching and implementing QI tools has led to start of improvement in MUCFC care. Close monitoring and sharing resources like UMCFC algorithms, protocols, and QI processes were done.Publication Open Access Depression, anxiety, and sleep quality of caregivers of children with spinal muscular atrophy(2023-03-01) ERGENEKON, ALMALA PINAR; YILMAZ YEĞİT, CANSU; SELÇUK, MERVE; KARABULUT, ŞEYDA; ÖZTÜRK THOMAS, GÜLTEN; ERDEM ERALP, ELA; ÜNVER, OLCAY; KARADAĞ, BÜLENT TANER; GÖKDEMİR, YASEMİN; ERGENEKON A. P., Gumus Z., YILMAZ YEĞİT C., Cenk M., Gulieva A., Kalyoncu M., SELÇUK M., KARABULUT Ş., ÖZTÜRK G., ERDEM ERALP E., et al.BackgroundThe aim of this study was to evaluate the prevalence of anxiety, depression, sleep, and associated factors in caregivers of children with spinal muscular atrophy (SMA). Materials and MethodsBeck Depression Inventory (BDI), the State-Trait Anxiety Inventory-State (STAI-S), the State-Trait Anxiety Inventory-Trait (STAI-T), and Pittsburgh Sleep Quality Index (PSQI) were used to assess the anxiety, depression, and sleep quality of the caregivers of children with SMA. Higher scores indicated worse outcome for all three questionnaires. ResultsFifty-six caregivers of children with SMA were included in the study. Median age of children was 6 (3.2-10) years and mean age of the caregivers was 37.0 +/- 6.5 years. Median scores of the BDI, STAI-S, STAI-T, and PSQI were 12 (7.2-17), 35.5 (31-44), 40.5 (35-48), and 7.0 (5.0-10.0), respectively. There was a positive correlation between BDI and PSQI scores (p < 0.05). There was a negative correlation between the age of the caregivers and PSQI, BDI, STAI-T scores (p = 0.01, r = -0.341; p = 0.006, r = -0.364; p = 0.003, r = -0.395, respectively). There was a negative correlation between the age of the patients and the PSQI scores of the caregivers (p = 0.01, r = -0.33). There was a negative correlation between BDI scores and household income (p = 0.01, r = -0.34). ConclusionCaregivers of children with SMA had elevated depression and anxiety levels and they also had decreased sleep quality. Economic and social support resources are needed to help caregivers of those children.Publication Open Access Electronic home monitoring of children with cystic fibrosis to detect and treat acute pulmonary exacerbations and its effect on 1-year FEV1(2023-01-01) UZMANOĞLU, MUSTAFA SELÇUK; ERGENEKON, ALMALA PINAR; GÖKDEMİR, YASEMİN; ERDEM ERALP, ELA; Yanaz M., Yilmaz Yegit C., Gulieva A., Kalyoncu M., UZMANOĞLU M. S., Uzunoglu B., Tastan G., ERGENEKON A. P., GÖKDEMİR Y., ERDEM ERALP E., et al.Background: We aimed to investigate the effect of the use of electronic home spirometry in children with cystic fibrosis (CF) on 1-year FEV1 (% predicted, pp) change. Methods: This is a randomised, one-year prospective study including children with CF between 6 and 18 years of age. Subjects were randomised into home spirometry group (HSG) and usual care group (UCG). Children in HSG performed two pulmonary function tests (PFT) per week. Data regarding acute pulmonary exacerbations (PEx) was obtained from patients’ records. At baseline and 12th month, health related quality of life questionnaire for CF patients (CFQ-R) and lung clearance index (LCI) were performed. Results: Sixty children were recruited with a median (IQR) age of 13.3 (11.4–15.4) years. Absolute change in FEV1pp from baseline to 12th month as median (IQR) was +1% (-6.75–9.75) in HSG and -2.50% (-7.50–3.25) in UCG (p = 0.10). Sensitivity analysis including only adherent children in HSG (n = 22), yielded an increase of 5% (-3.50–12) in HSG and a decrease of 2.50% (-7.50–3.25) in UCG (p = 0.009). A total of 29 (96.7%) subjects in HSG and 23 (76.7%) in UCG had PEx (p = 0.05). Absolute change in median (IQR) LCI2.5 from baseline to the 12th month was -1.6 [-2.9–0] (p<0.001) in HSG and -1.5 [-2.8-(-0.6)] (p<0.001) in UCG (p = 0.94). There was a significant increase in the social domain of the CFQ-R in HSG (from 59.1 to 76.2, p = 0.01). Conclusions: Electronic home monitoring of children with CF by spirometry may result in improvement in lung function.Publication Open Access The outcome of two SMA cases treated with nusinersen at seven hours and at three days of life: the earliest ever(2022-07-01) ÜNVER, OLCAY; ESİM BÜYÜKBAYRAK, ESRA; GÖKDEMİR, YASEMİN; MEMİŞOĞLU, ASLI; Ünver O., Çelik T., Memişoğlu A., Büyükbayrak E., Tülin Şimşek F., Öztürk G., Eser G., Saygı E. K., Gökdemir Y., Aktekin B., et al.New molecular therapies are available for the treatment of spinal muscular atrophy (SMA) but early intervention is required. We report two cases that were diagnosed prenatally, where treatment with nusinersen was initiated within 7 h and three days respectively. The children were followed up for 13 months and almost six years respectively. Both children have developed within entirely normal centiles, indicating that initiating treatment immediately after birth, as in these cases, is essential for a good outcome.Publication Open Access Is the pediatric sleep questionnaire sensitive for sleep-disordered breathing in children with complex chronic disease(2023-01-01) GÖKDEMİR, YASEMİN; ERDEM ERALP, ELA; Kalyoncu M., Namlı N., Yegit C. Y., Yanaz M., Gulieva A., Ergenekon A. P., Selçuk M., Atağ E., İkizoğlu N. B., Sabancı M., et al.Purpose: Sleep-disordered breathing (SDB) is a disease defined by breathing or breathing irregularities while asleep. The current study examines the association between results of polysomnography (PSG) and the Pediatric Sleep Questionnaire (PSQ), and the specificity and sensitivity of the PSQ for obstructive sleep apnea (OSA) in patients with chronic illnesses. Methods: Demographic and clinical attributes, in addition to PSQ and PSG outcomes were examined retrospectively among patients who underwent polysomnography (PSG) at our facility between 2012 and 2021. Results: Of 745 patients included in the study, 462 (62%) were male. The median age was 81 months (34–151 months). 117 of the patients (15/8%) had chronic lung disease, and 80 (10.7%) had cerebral palsy. The most common indications for PSG were symptoms of OSA (n = 426; 57.1%). According to obstructive apnea-hypopnea index (AHI), 361 patients (48.5%) had normal PSG. The median PSQ score was 0.40 (0.22–0.57). The sensitivity and specificity of the PSQ were 71.8% and 40.4%, respectively, for individuals aged 2 to 18 years. Among the disease subgroups, the cerebral palsy group had the highest sensitivity of PSQ (88.8%) for diagnosis of OSA. Conclusion: Questionnaires for evaluating SDB are not sensitive or specific for identification of OSA in children with chronic conditions, and PSG remains the best method.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 Parent's report on oral health-related quality of life of children with cystic fibrosis(2022-10-01) PEKER, MEHMET SERTAÇ; GÖKDEMİR, YASEMİN; ERDEM ERALP, ELA; KARADAĞ, BÜLENT TANER; KARGÜL, BETÜL; Sisman H. I. , Peker S., GÖKDEMİR Y., ERDEM ERALP E., KARADAĞ B. T. , KARGÜL B.Background Health-related quality of life (HRQoL) scales are now widely used in children with cystic fibrosis (cwCF) which reflects the course of the disease. In this cross-sectional study, our primary aim was to compare the Pediatric Oral Health-Related Quality of Life (POQL) and Oral Health Score (OHS) between cwCF and healthy group. Our secondary aim was to evaluate the association between Pseudomonas aeruginosa (PA) colonization, pulmonary function test, OHS and POQL in cwCF. Methods The study population (age ranging 6-14) included 55 cwCF followed at the Marmara University Division of Pediatric Pulmonology compared with 50 healthy peers. A survey consisted of general questions (age, sex, etc.) and the POQL instrument were filled by parents. The decayed, missing, and filled teeth for both primary (dft) and permanent dentition (DMFT) was detected according to WHO criteria. Data like current body mass index (BMI z score), colonization status with PA, predicted value for forced expiratory volume in 1 second (FEV1pp), and any hospitalizations during the previous year were obtained from their medical. Differences between the groups were evaluated using Chi-square and Mann-Whitney U test with a significance level set at 0.05. Results There was no significant difference between PA-colonized cwCF and healthy controls in DMFT (p = 0.916). For all domains of POQL (emotional function, social function, role function), scores of cwCF were significantly better than healthy controls (p 0.05). Conclusion Although POQL scores of cwCF were encouraging, dental caries prevention and regular follow-ups should be taken into consideration.Publication Open Access Long-term outcomes of standardized training for caregivers of children with tracheostomies: The IStanbul PAediatric Tracheostomy (ISPAT) project(2023-01-01) ERGENEKON, ALMALA PINAR; GÖKDEMİR, YASEMİN; KARADAĞ, BÜLENT TANER; Bilgin G., ÜNAL F., Yanaz M., Baskan A. K. I. L. I. C., Uzuner S., Ayhan Y., Onay Z. R., Kalyoncu M., Tortop D. M. A. V. I., Arslan H., et al.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.Publication Open Access Çocuklarda fleksibl bronkoskopi- marmara çocuk göğüs hastalıkları deneyimi(2022-05-01) ERGENEKON, ALMALA PINAR; ŞAHİN, ECENUR; YILMAZ YEĞİT, CANSU; ERDEM ERALP, ELA; GÖKDEMİR, YASEMİN; KARADAĞ, BÜLENT TANER; Ergenekon A. P., Şahin E., Yılmaz Yeğit C., Yanaz M., Guliyeva A., Kalyoncu M., Selçuk M., Erdem Eralp E., Gökdemir Y., Karadağ B. T.Amaç: Fleksibl bronkoskopinin pediatrik hastalarda tanı ve/veya tedavi amaçlı kullanımı yeni endikasyon alanlarıyla son yıllarda oldukça artış göstermiştir. Bu çalışmada amacımız Çocuk Göğüs Hastalıkları kliniğimizde 5 yıllık sürede gerçekleştirdiğimiz 732 fleksibl bronkoskopi işlemi ile ilgili deneyimimizi sunmaktır. Gereç ve Yöntem: 2016-2021 yılları arasında fleksibl bronkoskopi işlemi uygulanan 18 yaş altı çocuklar çalışmaya dahil edildi. Hastaların tıbbi kayıtları incelendi ve demografik özellikleri, bronkoskopi endikasyonları, bronkoskopi bulguları, komplikasyonlar ve bronkoalveoler lavaj sonuçları kayıt edildi. Bulgular: Hastaların ortanca yaşı 5 yıl idi. Fleksibl bronkoskopinin en sık endikasyonu tekrarlayan alt solunum yolu enfeksiyonu (%29,6), ikinci en sık neden kronik öksürük (%16,4) idi. Fleksibl bronkoskopi yapılan hastaların 49’unda (%6,7) immun yetmezlik, 42’sinde (%5,7) malignite mevcuttu. Bronkoskopik değerlendirmeler 250 (%34,2) hastada normal hava yolu anatomisi ortaya koyarken, 482 (%65,8) hastada en az bir patolojik bulgu saptadı. En sık görülen bulgular 268 (%36,6) hastada havayolu sekresyonları artışı ile 66 (%9) hastada bronkomalazi idi. Hastaların 111’inde (%20,8) mikrobiyolojik üreme mevcuttu. Haemophilus influenzae en sık bulunan bakteri idi. Hiçbir hastada majör komplikasyon gözlenmedi. Sonuç: Fleksibl bronkoskopi, tekrarlayan alt solunum yolu enfeksiyonu olan hastalarda bronkoalveoler lavaj kültür sonuçları ile uygun antibiyotik tedavisinin verilebilmesi açısından çok önemlidir. Stridoru olan hastalarda laringomalazi veya ikincil hava yolu lezyonlarının; persistan hışıltı ve kronik öksürüğü olan hastalarda bronkomalazinin kesin tanısı için önemli bir araçtır.