Quality of life of hemophiliac patients and satisfaction with their prophylactic treatment in Colombia

Abstract

Background: Hemophilia is an X-linked congenital bleeding disorder caused by a deficiency of coagulation factors. By which the therapy with recombinant and factors coagulation protein is necessary all life. This causes both physical and psychosocial changes that affect the quality of life. The objective of this research was to determine the association between quality of life, treatment satisfaction, and clinical severity of vulnerable hemophiliac patients of Cartagena-Colombia. Methods: An observational study was conducted by reviewing medical records of hemophiliacs. Quality of Life (QoL) Questionnaire Hemophilia Mexico and treatment satisfaction (TS) questionnaires were applied to patients with Hemophilia in Cartagena-Colombia. Associations between QoL and clinical severity and bivariate correlations between QoL and TS were assessed. Results: 29 hemophiliac patients between 1 and 60 years old were evaluated. 80% of patients were classified with moderate and severe hemophilia. 76% of individuals presented high QoL and 24% an average QoL; low QoL dimensions were: Knowledge about the disease, risks, physical discomforts, emotional aspects, and school or work absenteeism. TS was high, with results of 5.74 ± 0.06 (0-6 scale). There were correlations between some variables of TS with values of R2> 0.1, p <0.01. Conclusions: QoL perception of patients was high despite their hemophiliac classification as moderate to severe, TS was high as well, showing a positive correlation with some QoL dimensions related directly with hemophilia and emotional aspects.