Quality of Life of Hemophiliacs and Ways to Improve It
Determining the quality of life (QoL) also reflects the morbidity associated with the disease, in this case, hemophilia. In the study presented below, the authors focused on determining QoL in relation to socioeconomic and other characteristics.
Introduction
The World Health Organization (WHO) defines quality of life as the individual's perception of their position in life within the context of the cultural and value system in which they live, and in relation to their goals and expectations. Health-related quality of life (HRQoL) is multidimensional, considering the physical, emotional, mental, and social components of patients' overall satisfaction and functioning.
Hemophilia, a congenital and lifelong bleeding disorder, increases the tendency to bleed. Joint bleeding leads to pain, joint damage, disability, and significantly impaired HRQoL.
Study Results
The study was conducted in Indian centers between June and November 2018, involving 201 hemophiliacs over 4 years old. Nearly half (48.7%) had severe hemophilia, almost a third (29.9%) had moderate hemophilia, and approximately a fifth (21.4%) had mild hemophilia.
QoL was measured using Haemo-QoL questionnaires for different age categories of pediatric patients and Haem-A-QoL for adults. These consist of 46 items divided into 10 dimensions. Scores obtained in individual dimensions and the total score translate into a 0–100 scale, where higher values indicate greater impairment of quality of life. Hemophilic arthropathy was assessed using the World Federation of Hemophilia Joint Score.
The average Haemo-QoL scores for individual age categories were as follows (mean ± standard deviation):
- 4–7 years: 43.92 ± 8.09
- 8–12 years: 37.37 ± 8.62
- 13–16 years: 32.79 ± 6.66
- > 16 years: 45.92 ± 6.30
Significant differences in QoL scores were observed based on age, disease severity, educational attainment, type of employment, socioeconomic status, marital status, and the presence or absence of target joints.
Conclusion
Overall QoL scores and scores in some dimensions significantly correlated with joint health scores. This finding supports the fact that regular physiotherapy, leading to improved overall physical condition and joint health, subsequently helps improve the quality of life in people with hemophilia.
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Source: Das S., Roy R. N., Das D. K. et al. Health-related quality of life of hemophilics and its possible correlates: a perspective in health promotion and disability prevention. J Educ Health Promot 2019; 8: 257, doi: 10.4103/jehp.jehp_249_19.
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