T Salomon1,2, D G Chaves2,3, S Brener2,3, P R J Martins2,3, J V M Mambrini4, S V Peixoto1,2,4,5. 1. Programa de Pós-Graduação em Saúde Coletiva - Fiocruz Minas, Belo Horizonte, Minas Gerais, Brazil. 2. Grupo de Qualidade de Vida em Hematologia e Hemoterapia, Belo Horizonte, Minas Gerais, Brazil. 3. Fundação Hemominas, Belo Horizonte, Minas Gerais, Brazil. 4. Fiocruz Minas - Centro de Pesquisas René Rachou, Belo Horizonte, Minas Gerais, Brazil. 5. Escola de Enfermagem - Universidade Federal de Minas Gerais, Belo Horizonte, Minas Gerais, Brazil.
Abstract
INTRODUCTION: Several studies show the negative impact of haemophilia in health-related quality of life (HRQOL). This issue is not well explored in developing countries. OBJECTIVES: This cross-sectional study aimed to evaluate the HRQOL and its associated factors in patients with haemophilia A/B in Brazil. Data were collected by questionnaire and in medical records, including a Portuguese version of Haem-A-Qol. RESULTS: Brazilian patients were invited to the study and 175 participants (147 haemophilics A and 28 haemophilics B) were included. The total score of the Haem-A-QoL had a median of 36.96 (range of 0-100), with worse performance in 'sport and leisure' and best on 'relationships' fields. HRQOL was worst among the older participants, the less educated, non-white, non-working, who were hospitalized in the last year, who did not have a single medical consultation and among those with the highest number of affected joints. Moreover, patients with hepatitis B had a significantly worse HRQOL in the domain 'sports and leisure', also observed in married patients. Otherwise, married individuals reported better HRQOL on 'dealing with the disease' domain. Patients with haemophilia B reported worse HRQOL in the domain 'self-perception'. CONCLUSION: The results obtained could be helpful in guidance of haemophilia treatment which is determinant to improve HRQoL of the most vulnerable groups of patients. This work also reinforced the relevance of joint bleeds in all aspects of HRQoL in haemophilic patients. The use of prophylactic factor concentrates and multidisciplinary treatments could contribute to improve the quality of life in haemophilia.
INTRODUCTION: Several studies show the negative impact of haemophilia in health-related quality of life (HRQOL). This issue is not well explored in developing countries. OBJECTIVES: This cross-sectional study aimed to evaluate the HRQOL and its associated factors in patients with haemophilia A/B in Brazil. Data were collected by questionnaire and in medical records, including a Portuguese version of Haem-A-Qol. RESULTS: Brazilian patients were invited to the study and 175 participants (147 haemophilics A and 28 haemophilics B) were included. The total score of the Haem-A-QoL had a median of 36.96 (range of 0-100), with worse performance in 'sport and leisure' and best on 'relationships' fields. HRQOL was worst among the older participants, the less educated, non-white, non-working, who were hospitalized in the last year, who did not have a single medical consultation and among those with the highest number of affected joints. Moreover, patients with hepatitis B had a significantly worse HRQOL in the domain 'sports and leisure', also observed in married patients. Otherwise, married individuals reported better HRQOL on 'dealing with the disease' domain. Patients with haemophilia B reported worse HRQOL in the domain 'self-perception'. CONCLUSION: The results obtained could be helpful in guidance of haemophilia treatment which is determinant to improve HRQoL of the most vulnerable groups of patients. This work also reinforced the relevance of joint bleeds in all aspects of HRQoL in haemophilic patients. The use of prophylactic factor concentrates and multidisciplinary treatments could contribute to improve the quality of life in haemophilia.