Adnan DENİZ, Nazan SARPER, Emine ZENGİN, Sema AYLAN GELEN

Hemophilia Specific Quality of Life Index in Turkish Children and Young Adults. Cross-sectional Study from a Single Center

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.

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

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