Hemophila Experiences, Results and Opportunities (HERO study) in Brazil: Assessment of the Psychosocial Effects of Haemophila in Patients and Caregivers

A team of researchers presented results from the Haemophilia Experiences, Results and Opportunities (HERO) study, which assessed the psychosocial aspects of life among people with hemophilia (PwH) living in Brazil. Their findings were published in Haemophilia.

Established in 2009, the HERO project was an international initiative which comprised the largest multi-method psychosocial study to date, evaluating 1,236 PwH from 10 countries. The study sought to provide an enhanced understanding of the psychosocial challenges that come with living with hemophilia from the perspective of both the patients and their caregivers. However, prior to this study, there was a lack of information on PwH living in Brazil, which the authors described as an “upper middle-income country which, despite several challenges, has made significant improvements in the treatment of hemophilia over the last two decades.”

In this observational, multicenter, cross-sectional study, researchers recruited 100 PwH and 100 caregivers (who responded on behalf of their oldest affected child who was younger than 18) from seven reference Hemophilia Treatment Centers (HTCs) from November 2014 to July 2015. For eligibility, the PwH population of interest was required to be under replacement therapy and must have had at least one spontaneous bleed into one or more joints in the preceding 12 months. The study’s main objective was to quantify the impact of the primary psychosocial aspects that affected PwH in their daily lives. Secondary objectives centered on elucidating the attitudes and responsibilities of patients and caregivers alike to better understand their health status and overall well-being. Quality of life (QOL) was measured using an EQ-5D-3L assessment.

Based on the study results, on the EQ-59 assessment, 64% of PwH disclosed having extreme/moderate pain while the treatment of depression/anxiety was reported by 18% of PwH and 29% of caregivers. Moreover, PwH in Brazil were shown to have a lower employment rate compared to countries included in the original HERO study (51% vs 60%), with 71% of respondents saying that hemophilia negatively impacts their work life. Furthermore, over a five-year duration, 58% of PwH and 68% of caregivers had little difficulty procuring concentrate factor to treat their disease.

“As a milestone for this type of study in Brazil, the conclusions herein are highly useful and shine a light over different aspects that might impact treatment outcomes,” the researchers wrote.

“The findings related to chronic pain and physical limitations should be interpreted in conjunction with the chronology of the implementation of primary prophylaxis in Brazil. This knowledge has identified an important area of improvement that demands healthcare professionals to provide early access to treatment.”

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