Quality of Life of People with Hemophilia

Karki S*, Niraula HK**

Abstract


INTRODUCTION: 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. Although life expectancy of hemophiliacs in developed countries is close to that of healthy
persons this is not the case in developing countries.This study aims to identify the quality of life of people with Hemophilia, who are clinically diagnosed with either Haemophilia A or B.

METHOD: A descriptive study was conducted among 16 years and above male hemophiliac at hemophilia Care unit of NAMS, Bir Hospital. Sixty respondents were selected by using non-probability purposive sampling technique. The English version of Hemophilia Specific quality of life questionnaire. (Haemo-A-Qol) after getting approval from Dr. Sylvia Von Mackenson was translated in Nepali language and was administered to collect the data. Data processing was done using computer (SPSS version 19).The higher the score obtained in Haemo-A-Qol the poorer quality of life and the lower the score better the quality of life.

RESULT: This research study showed that 36.7% of respondents were between 21 to 25 years of age with the mean age of 24.9 +_6.25 years. Out of 60, 85% had Hemophilia “A” & 15% had Hemophilia “B” .Among them only 73% respondents know their factor activity level and of which 54% had severe, 29% had moderate form and 15% had mild form of hemophilia. The average Haemo-A- Qol total score was 43.19, ranging from 0.47 to 95.41. The dimension “view of yourself”, “treatment “, “physical health” had the highest averages (62.91, 48.33 and 46.67) respectively indicating poorer quality of life where as the dimension “family planning and partnership” were the least impaired dimensions among the respondents with mean score of 13.54 & 19.86
respectively. By severity of the hemophilia, the severe form had the highest mean score 36.69 indicating poorer quality of life.

CONCLUSION: More than one- third of respondents had the highest averages indicating poorer quality of life. By dimension, “view of self” was the most impaired and “planning of the family” was the least impaired.

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