Haemophilia Experiences, Results and Opportunities (HERO study) in Brazil: Assessment of the psychosocial effects of haemophilia in patients and caregivers

Abstract

Introduction The international Haemophilia Experiences, Results and Opportunities (HERO) study assessed the psychosocial aspects of life for people with haemophilia (PWH) and their caregivers in several countries. Brazil was not included in this initiative. Aim and methods An observational, multicentre, cross‐sectional study was performed involving PWH (moderate‐to‐severe haemophilia) and their caregivers, from November 2014 to July 2015. The primary objective was to quantify the extent of the primary psychosocial factors affecting PWH in their everyday life. Descriptive statistics and comparisons between Brazilian and global respondents are presented. Results A total of 100 adult male PWH and 100 caregivers (responding on behalf of their oldest affected child aged <18 years) completed the survey. Sixty‐eight per cent of the PWH had haemophilia A without inhibitors. Chronic pain and hepatitis C were the most common conditions related to haemophilia. On the EQ‐5D assessment, 64% of PWH reported extreme/moderate pain. Treatment for depression or anxiety was reported by 18% of PWH and by 29% of caregivers. There was a lower employment rate for PWH in Brazil, compared to the countries included in the original HERO survey (51% vs 60%); 71% of PWH stated that haemophilia has a negative impact on their work. Over the previous 5 years, 58% of PWH and 68% of caregivers did not have difficulties in obtaining the concentrated factor for treatment. Conclusions Our study presents an overview of the psychosocial aspects of life with haemophilia in Brazil, providing a basis for health policy decisions and may further improve comprehensive care for PWH.

Haemophilia management and treatment: An Italian survey on patients’, caregivers’ and clinicians’ point of view

“…[1][2][3][4][5][6][7] In high-income countries, such as United States and Europe, this information has been collected mainly through surveys involving healthcare professionals, with fewer surveys involving also patients and caregivers. [1][2][3][4][5][6][7] The lack of robust and multifaceted researches that explore and quantify the healthcare, social and psychological aspects of PWH, has led to the development of international initiatives to collect information reported by health care professionals, patients and caregivers. However, also, these important surveys were conducted in a period, between 2011 and 2015, that do not represent the current changing scenario of haemophilia treatment and management and the relative impact on patients' lives.…”

A Cross-National Survey of People Living with Hemophilia: Impact on Daily Living and Patient Education in Central Europe

“…The daily challenges faced by people with hemophilia and their caregivers can have a significant negative impact on well-being, as well as psychosocial functional status. 24 The Haemophilia Experiences, Results and Opportunities (HERO) study in North America reported severe pain interference in approximately 30% of PwH aged >30 years, 25 while results from the HERO survey in Brazil revealed that 64% of adult male PwH have moderate/ severe pain, 26 both based on analysis of the standardized EuroQOL five dimensions questionnaire (EQ-5D). Analysis by O'Hara et al of young adults (aged 18-35 years) treated with primary prophylaxis in the CHESS survey, showed that 73% of respondents had at least one bleed event in past 12 months.…”

“…Several study limitations should be considered when interpreting the results. First, the survey questionnaire used was designed for the purposes of the study but was not subjected to rigorous psychometric and clinimetric testing; in contrast, the HERO 25,26 and CHESS studies 27 both used the standardized EQ-5D domain analysis. Items for our questionnaire were based on expert opinion as well as from the literature but did not include any standardized assessment of the validity, reliability and responsiveness of the questionnaire.…”

Cost of hemophilia A in Turkey: an economic disease burden analysis

“…Increased factor costs associated with prevention could be balanced by avoiding direct and indirect costs of managing bleeding episodes and complications [58,59]. The non-economic benefit of this approach would be improved quality of life for patients along with their caregivers and families [60,61]. Compliance with factor replacement regimens must be optimized as well to fully actualize these expected benefits.…”