Evaluation of quality of life in hemophilia patients using the WHOQOL-bref and Haemo-A-Qol questionnaires

Abstract

Introduction: Hemophilia is a coagulopathy caused by a deficiency in coagulation factors VIII (hemophilia A) or IX (hemophilia B). It is a chronic disease and, hence, impairs the quality of life (Qol) of the patients. This study aimed to evaluate the Qol of patients with hemophilia using the WHOQOL-bref and the Haemo-A-Qol instruments, its relation to the clinical condition and its sociodemographic variables. Methods: This is a cross-sectional, epidemiological study, comprising 17 patients with hemophilia, registered at the hemocenter, who met the eligibility criteria. Data were collected using three questionnaires: a semi-structured clinical evaluation form, the WHOQOL-bref and the Haem-A-Qol. Results: The average age was 30 years old, and most participants declared themselves to be single (58.82%), without children (64.70%) and employed (58.82%). Hemophilia A was observed in 14 patients and the most severe form of the disease was more prevalent (64.70%). The average score of Qol, estimated by the WHOQOL-bref questionnaire was 74.3; being “social relations” the domain with the highest average. The Haem-A-Qol measured an average of 36.2 and the domain with the highest result was “Family Planning”. Conclusion: Hemophilia had a higher negative impact upon the physical, sports and leisure features in the sample subjects. The analysis of the questionnaires did not reveal statistical agreement between them. Based on this, the Haem-A-Qol is considered the most recommended to evaluate the Qol, as it addresses factors more specifically related to the disease. No statistical significance was observed between the scores of Qol, as for the presence of comorbidities, gravity of the hemophilia and positive serology for infections. Keywords: Hemophilia, Quality of life, Haem-A-Qol, WHOQOL-bref