Hemophilia Specific Quality of Life Index in Turkish Children and Young Adults. Cross-sectional Study from a Single Center
Yıl: 2021 Cilt: 10 Sayı: 3 Sayfa Aralığı: 203 - 212 Metin Dili: Türkçe DOI: 10.5505/ktd.2021.26234 İndeks Tarihi: 21-05-2022
Hemophilia Specific Quality of Life Index in Turkish Children and Young Adults. Cross-sectional Study from a Single Center
Öz: INTRODUCTION: Hemophilia-specific quality of life index (Haemo-QoL) is a questionnaire designed for patients with hemophilia. It is a valuable tool to evaluate standards of care and to understand patient's and parent's feelings and challenges. This study aims to evaluate the quality of life in hemophiliac patients. METHODS: Hemophilia patients 4-25-year-old and having factor level ≤1 were enrolled during their outpatient visits. Turkish version of Haemo-QoL for children and proxy and adults was applied. (www.haemoqol.de) Patients were also screened for hepatitis virus and human immune deficiency virus serology. RESULTS: Forty-three patients with hemophilia A and hemophilia B were enrolled. The study group was 74.1% of the patients carrying enrolment criteria. The median age of diagnosis was 11.5 (5.5-25.5) months for the 4-16 age group and 12.0(6.0-27.0) months for the 17-25-year-old group. Sixty percent of the patients (26/43) could perform the home treatment. Patients on primary prophylaxis and secondary prophylaxis were18.60% and 69.76% of the study group, respectively. Two patients in the>16 age group were hepatitis B carriers. Factor injection was the most impaired score in the 4-16-year-old group. In the 4-7-year-old group, relations with family and treatment dimensions were poorly impaired. In the 8-12 age group perceived support and in the 13-16 age group, sports and leisure scores were poor. In 4-16-year-old groups total haemo-QoL score range was 29.9-34.4. There was no patient with severe arthropathy DISCUSSION AND CONCLUSION: Quality of life of children and young adults with hemophilia is acceptable in this study. Training of the patients and families should continue for more compliance to prophylaxis.
Anahtar Kelime: -
Öz: GİRİŞ ve AMAÇ: Hemofiliye özgü hayat kalitesi ölçeği hemofili hastaları için düzenlenmiş bir ankettir. Hemofili tedavi standartlarını, hasta ve ebeveynlerinin duygularını ve yaşadıkları güçlükleri değerlendirmek için değerli bir araçtır. Bu çalışmanın amacı hemofili hastası çocuk ve genç erişkinlerin hayat kalitesini değerlendirmektir. YÖNTEM ve GEREÇLER: Faktör düzeyi <1 olan 4-25 yaştaki hemofili hastaları poliklinik başvuruları sırasında çalışmaya alındı. Hemofiliye özgü yaşam kalitesi anketi çocuklar ve vasilerine (Haemo-QoL) ve erişkin hastalara (Haemo-A-QoL) uygulandı. (www.haemoqol.de). Hepatit ve insan immün yetersizlik virusu serolojisi için taramaları da yapıldı. BULGULAR: Hemofili A ve hemofili B tanılı 43 hasta çalışmaya alındı. Çalışma grubu dahil etme kriterlerine sahip hastaların %74,1 ini oluşturuyordu. Tanıda ortanca yaş 4-16 yaştaki hastalarda 11,5 (5,5-25,5) ay, 17-25 yaştakilerde 12,0(6,0-27,0) aydı. Hastaların %60 ı (26/43) evde tedavi uygulayabiliyordu. Birincil ve ikincil koruyucu tedavi uygulayanlar sırasıyla grubun %18,6 ve 69,7 sini oluşturuyordu. On altı yaş üstündeki iki hasta hepatit B taşıyıcısıydı. Faktör enjeksiyonu 4-16 yaş grubunda en kötü puanı aldı. 4-7 yaş grubunda aile ilişkiler ve tedavi kötü etkilenmişti. 8-12 yaş grubunda algılanan destek, 13-16 yaş grubunda spor ve boş zamanlar kötü etkilenmişti. 4-16 yaş gruplarında toplam Haemo-QoL puanı 29,9-34,4 arasındaydı. Ağır eklem sorunu olan hasta yoktu. TARTIŞMA ve SONUÇ: Bu çalışmada hemofili hastası çocuk ve genç erişkinlerin hayat kalitesi kabul edilebilir düzeydeydi. Profilaksiye uyumu arttırmak için hasta ve ailelerin eğitimi sürdürülmelidir.
Anahtar Kelime: Belge Türü: Makale Makale Türü: Araştırma Makalesi Erişim Türü: Erişime Açık
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| APA | deniz a, Sarper N, zengin e, AYLAN GELEN S (2021). Hemophilia Specific Quality of Life Index in Turkish Children and Young Adults. Cross-sectional Study from a Single Center. , 203 - 212. 10.5505/ktd.2021.26234 |
| Chicago | deniz adnan,Sarper Nazan,zengin emine,AYLAN GELEN SEMA Hemophilia Specific Quality of Life Index in Turkish Children and Young Adults. Cross-sectional Study from a Single Center. (2021): 203 - 212. 10.5505/ktd.2021.26234 |
| MLA | deniz adnan,Sarper Nazan,zengin emine,AYLAN GELEN SEMA Hemophilia Specific Quality of Life Index in Turkish Children and Young Adults. Cross-sectional Study from a Single Center. , 2021, ss.203 - 212. 10.5505/ktd.2021.26234 |
| AMA | deniz a,Sarper N,zengin e,AYLAN GELEN S Hemophilia Specific Quality of Life Index in Turkish Children and Young Adults. Cross-sectional Study from a Single Center. . 2021; 203 - 212. 10.5505/ktd.2021.26234 |
| Vancouver | deniz a,Sarper N,zengin e,AYLAN GELEN S Hemophilia Specific Quality of Life Index in Turkish Children and Young Adults. Cross-sectional Study from a Single Center. . 2021; 203 - 212. 10.5505/ktd.2021.26234 |
| IEEE | deniz a,Sarper N,zengin e,AYLAN GELEN S "Hemophilia Specific Quality of Life Index in Turkish Children and Young Adults. Cross-sectional Study from a Single Center." , ss.203 - 212, 2021. 10.5505/ktd.2021.26234 |
| ISNAD | deniz, adnan vd. "Hemophilia Specific Quality of Life Index in Turkish Children and Young Adults. Cross-sectional Study from a Single Center". (2021), 203-212. https://doi.org/10.5505/ktd.2021.26234 |
| APA | deniz a, Sarper N, zengin e, AYLAN GELEN S (2021). Hemophilia Specific Quality of Life Index in Turkish Children and Young Adults. Cross-sectional Study from a Single Center. Kocaeli Tıp Dergisi, 10(3), 203 - 212. 10.5505/ktd.2021.26234 |
| Chicago | deniz adnan,Sarper Nazan,zengin emine,AYLAN GELEN SEMA Hemophilia Specific Quality of Life Index in Turkish Children and Young Adults. Cross-sectional Study from a Single Center. Kocaeli Tıp Dergisi 10, no.3 (2021): 203 - 212. 10.5505/ktd.2021.26234 |
| MLA | deniz adnan,Sarper Nazan,zengin emine,AYLAN GELEN SEMA Hemophilia Specific Quality of Life Index in Turkish Children and Young Adults. Cross-sectional Study from a Single Center. Kocaeli Tıp Dergisi, vol.10, no.3, 2021, ss.203 - 212. 10.5505/ktd.2021.26234 |
| AMA | deniz a,Sarper N,zengin e,AYLAN GELEN S Hemophilia Specific Quality of Life Index in Turkish Children and Young Adults. Cross-sectional Study from a Single Center. Kocaeli Tıp Dergisi. 2021; 10(3): 203 - 212. 10.5505/ktd.2021.26234 |
| Vancouver | deniz a,Sarper N,zengin e,AYLAN GELEN S Hemophilia Specific Quality of Life Index in Turkish Children and Young Adults. Cross-sectional Study from a Single Center. Kocaeli Tıp Dergisi. 2021; 10(3): 203 - 212. 10.5505/ktd.2021.26234 |
| IEEE | deniz a,Sarper N,zengin e,AYLAN GELEN S "Hemophilia Specific Quality of Life Index in Turkish Children and Young Adults. Cross-sectional Study from a Single Center." Kocaeli Tıp Dergisi, 10, ss.203 - 212, 2021. 10.5505/ktd.2021.26234 |
| ISNAD | deniz, adnan vd. "Hemophilia Specific Quality of Life Index in Turkish Children and Young Adults. Cross-sectional Study from a Single Center". Kocaeli Tıp Dergisi 10/3 (2021), 203-212. https://doi.org/10.5505/ktd.2021.26234 |
