Quality of Life, Perception of Disease and Coping Strategies in Patients with Hemophilia in Spain and El Salvador: A Comparative Study

BACKGROUND: Hemophilia is characterized by the development of joint bleeds that cause long-term joint damage (hemophilic arthropathy). Joint damage leads to disability and affects psychosocial aspects in patients with hemophilia. OBJECTIVE: To compare the clinical situation, perception of disease and quality of life, and coping strategies in adult patients with hemophilia in El Salvador and Spain. METHODS: In this comparative clinical study, 43 patients with hemophilia aged between 18 and 50 years old from Spain and El Salvador participated. After obtaining the patients’ consent, they completed the Illness Perception Questionnaire-Revised (IPQ-R), Hemophilia-QoL and Inventory of Coping strategies questionnaires. Joint status was assessed using the Hemophilia Joint Health Score and based on a record of clinical and treatment data. RESULTS: Hemophilia patients from Spain showed an improved perception of quality of life (p <0.05), although there were only differences in the self-criticism variable (p = 0.04) for coping strategies. Joint damage and age correlated (p <0.05) negatively with perception of disease, perceived quality of life and coping strategies in both populations. There were differences (p <0.05) between the two populations based on HIV and HCV coinfections in perception of disease and perceived quality of life. CONCLUSION: Patients with hemophilia in El Salvador exhibit a poorer perception of disease and quality of life. Despite differences in access to treatment from one country to the other, there is no difference in coping with the disease. Older patients are better able to adapt to the disease.