Quality of life in people with hemophilia:
bibliographic review
Keywords:
Quality of life, Hemophilia, Systematic review, Health, CaregiversAbstract
Hemophilia is a chronic disease that causes bleeding and severe pain and it has a negative impact on health-related quality of life (HRQoL of those who have this disease. This phenomenon has not been sufficiently studied in many countries. The objective of this study was to analyze and systematize the theoretical and empirical information about the determinants of HRQoL in people with hemophilia (PWH) and their caregivers. The search was carried out in the following databases: Google Scholar, EBSCO and Pubmed, between 2015 and 2020. 57 studies were included in which the most attended population was the adult. The most affected areas were painful joints, disability and the emotional imbalance that this disease causes. High levels of worry and stress are reported in caregivers. The cost of treatment, the effectiveness of medical care, and comparisons with healthy controls were the least studied subjects. 36% of the studies propose applying prophylactic treatment to improve HRQoL. Areas of opportunity are identified that will allow further understanding, measurement and interventions aimed to improve HRQOL in PWH.
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