TY  - JOUR
TI  - Hemophilia Specific Quality of Life Index in Turkish Children and Young Adults. Cross-sectional Study from a Single Center
AB  - 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.
AU  - AYLAN GELEN, SEMA
AU  - Sarper, Nazan
AU  - zengin, emine
AU  - deniz, adnan
DO  - 10.5505/ktd.2021.26234
PY  - 2021
JO  - Kocaeli Tıp Dergisi
VL  - 10
IS  - 3
SN  - 2147-0758
SP  - 203
EP  - 212
DB  - TRDizin
UR  - http://search/yayin/detay/507181
ER  -