Investigação do bem-estar e qualidade de vida relacionada à saúde de hemofílicos do Estado de Goiás e Distrito Federal, Brasil

Abstract

Hemophilia is an inherited coagulopathy chronic course that interferes in the lives of individuals affected, resulting in physical, psychological and behavioral changes leading to face reality and adapt to their condition. Objective: To evaluate the well-being and health related quality of life in adults with hemophilia. Methods: Analytical observational cross-sectional study with convenience sampling, being held in patients from two associations located in Brasilia - DF and Goiania - GO, respectively, in November and December 2015. The evaluation protocol included three instruments: "Medical Outcomes Study 36 - Item Short Form Health Survey" (SF-36), "Hemophilia Well-Being Index" and a form to collect demographic and clinical data. The study was approved by the Ethics Committee of the Federal University of Mato Grosso do Sul. Results: 63 participants had a mean age and standard deviation of 32.30 ± 8,61anos, with higher prevalence of brown skin color (52.4%), unmarried (58.7%) and graduation complete or incomplete (55.5%). About 58.7% reported physical activities regularly and 54% performed work activity. According to clinical, there was a higher frequency of hemophilia A (82.5%) and severe disease (74.6%). Secondary prophylaxis was the most commonly used treatment modality (68.3%). Regarding the presence of comorbidities, 4.8% of the sample developed inhibitors and 49.2% reported viral infection due to treatment for blood products, especially hepatitis C. The measurement of the overall quality of life of participants by SF-36 showed lower mean scores in the areas "pain" and "physical ability". The quality of life was positively influenced by physical activity variable and negatively affected by the increase in age, viral infections and development of clotting factor inhibitors. Participants got a high well-being index (26.33 ± 6.66). The higher level of education in this sample had a positive impact in the well-being index. There was a significant linear correlation between the total score on HWBI instrument and the different domains of the SF-36. Conclusion: The well-being is closely related with the quality of life, especially in the domains "physical aspects" and "emotional aspect" of the SF-36 in this sample. The training exercise guided aimed at maintaining the health of the musculoskeletal system and social interaction, were factors associated with increased quality of life and well-being in this population. In relation to well-being index, higher levels of education had a positive effect in relation to the item "economic situation". Adults with hemophilia with completed graduation were more prepared to face the challenges of the labor market, improve their income and get satisfaction derived from work.