Author/Authors :
Eshghi, P shahid beheshti university of medical sciences - Pediatric Congenital Hematologic Disorders Research Center, تهران, ايران , Khanali, L shahid beheshti university of medical sciences - Nursing department, تهران, ايران , Abed-Saeedi, J shahid beheshti university of medical sciences - Psychology department, تهران, ايران , Farahani, H shahid beheshti university of medical sciences - Psychology department, تهران, ايران , Abdolah Gorgi, F Mofid Children’s Hospital - Clinical Research Unit, ايران , Habib-Panah, B shahid beheshti university of medical sciences - Pediatric Congenital Hematologic Disorders Research Center, تهران, ايران , Tehrani Tarighat, S Iranian Hemophilia Comprehensive Care Center, ايران , Alavi, S shahid beheshti university of medical sciences - Pediatric Congenital Hematologic Disorders Research Center, تهران, ايران , Taslimi, S shahid beheshti university of medical sciences - Pediatric Congenital Hematologic Disorders Research Center, تهران, ايران
Abstract :
Background: Treating a chronic disease such as hemophilia is to improve the symptoms and quality of life (QOL) of the patients. This study aimed to study the quality of life among hemophilic children and compare the quality of life between patients receiving prophylactic or on demand treatments. Materials and Methods: In this descriptive-comparative study, we enrolled 60 patients from three main hemophilia care centers in Tehran. All patients were 4-7 year old. Half of the patients were receiving prophylactic and half were receiving on-demand treatment. The assessment tool was Heamo-QoL questionnaire which assesses the quality of life in different dimensions (physical, feeling, family, friends, others, attitude, treatment and behavior). In this instrument, higher points correspond to lower quality of life. The mean quality of life in each dimension and also the total score were determined. Quality of life was compared between prophylactic and on demand treatments. Results: The mean quality of life in groups receiving prophylactic and on-demand treatments were 2.6±0.3 and 3.33±0.4 respectively (P 0.001). All dimensions except “treatment” and “feeling” were different between groups. The highest impairments among patients, regardless of their treatment regimen, were in family and physical dimensions. Conclusion: It is necessary to pay more attention to prophylactic treatment in hemophilic children as it seems to provide a higher quality of life among patients.
Keywords :
Hemophilia , quality of life , prophylactic , treatment , on demand , Heamo , QoL
