Usha Kumari Ghimire and Pooja Gauro
Background: Hemophilia is an inherited, lifelong, sex-linked bleeding disorders predominantly occurring in males. People with bleeding disorder face life-long physical, psychological, financial and employment challenges. This study aims to identify the quality of life of people with Hemophilia, who are clinically diagnosed with either Hemophilia A or B.
Methods and materials: A descriptive survey design was conducted among 16 years and above male hemophiliac of Bara and Parsa districts, Nepal. Altogether 61 respondents were selected by using convenient sampling technique. A valid tool (Haemo-A-QoL) after getting approval from Dr Sylvia von Mackenson was translated in Nepali and Bhojpuri language and was administered to collect the data. Data processing was done using a computer (SPSS version 20).
Results: This study showed that the maximum number of respondents was of age group 16-20 (32.8%) and mean age group and standard deviation were 21-25 and 1.382 respectively. Out of 61 respondents 86.1% of the respondents had hemophilia A and 13.9% had hemophilia B. Among them 75.4% respondent know their factor activity level and of which 24.6% had severe, 26.2% had moderate form and 24.6% had mild form of hemophilia. The average Haemo-A-QoL total mean score was 32.72.
Conclusion: The dimension “Physical Health”, Feelings”, “Sports and leisure”, has the highest averages (72.76, 62.09 and 68.5 respectively) indicating poorer quality of life whereas the dimension “future” and “partnership and sexuality” was least impaired dimension between the respondents.
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