فهرست نشریات علمی دسترسی آزاد ایران

AbstractBackground and aim: Improving quality of life in a chronic disease such as hemophilia is a majorgoal of treatment. Hemophilic patients can be treated either prophylactically or on demand. Sincehaemophilia quality of life may be affected by the disease and treatment outcomes, comparison ofthese regimens in respect to quality of life outcomes provides useful information. The purpose ofthis study is to compare the quality of life between hemophilic children receiving prophylactic andon demand therapy in Tehran, Iran.Materials and method: A descriptive –comparative design was used. The sample of the studyconsisted of 60 hemophilic children which were recruited from haemophilia treatment centres inTehran. Of these children 30 were receiving prophylactic therapy and 30 of them were treated on-demand .Data was collected by haemophilia-specific QoL questionnaire (HAEMO-QoL). Thequestionnaire consists of 8 dimensions: physical health, feeling, view of yourself, family, friends,others, sport and dealing with haemophilia.The questionnaire consists of 18 items using a5-pointscale.The Higher scores represent a poorer quality of life and lower scores represent better qualityof life. Data were analyzed by SPSS 15 statistical software.Findings: The mean age of children was 5.3±1.2 and 6±1 in prophylactic and on demand therapyrespectively. The mean total score of quality of life was 40±9.8 and 58 ±10.9 for children inprophylactic therapy and on-demand treatment respectively. There was a significant differencebetween the quality of life scores in two groups. Analysis of subscale scores showed a lower qualityof life score for family domain in prophylactic therapy group, while the scores for family andphysical health subscsles in on-demand group showed a poor quality of life.Conclusion: Results of the study suggest that quality-of-life may be better for haemophilia children