Haemophilia Experiences, Results and Opportunities (HERO) study: treatment‐related characteristics of the population

Abstract

The HERO (Haemophilia Experiences, Results and Opportunities) quantitative surveys collected information on characteristics and perceptions of adult persons with haemophilia (PWH) and parents of children with haemophilia. The aim of this article is to describe the perceptions of PWH and parents on psychosocial aspects related to treatment. Two online surveys (one for PWH, one for parents) were conducted in 10 countries. Among 675 PWH respondents, 77% reported having responsibility for their own care; 72% of 561 parent respondents had the main responsibility for their son. PWH were most commonly treated on demand (45% of 648 adults using factor concentrate), with 32% on regular prophylaxis and 23% treated on demand with short-term prophylaxis (e.g. for sports/physiotherapy). Children were most often treated with prophylaxis (65% of 549 children using factor concentrate), with 26% treated on demand and 8% treated on demand with short-term prophylaxis. Factor was generally used as instructed at home. Some respondents (41% PWH; 30% parents) had difficulties/concerns with factor availability/affordability. PWH reported more bleeds in the last 12 months than parents reporting their son's bleeds (mean 17.8 vs. 8.7). Both PWH and parents generally perceived that overall, their (their son's) haemophilia was well controlled. Results differed by country. The HERO study captured new, patient-based data regarding many facets of life relevant to PWH, including treatment. The information conveyed in this article largely represents new insights regarding perceptions of treatment and provides initial benchmark statistics for further research.

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

“…The allocation of responsibilities for care and infusions in Brazil and other countries are described in Table . Most of the PWH reported being the primary person responsible for the management of their infusions (73%).…”

“…The study aimed to increase the understanding of the psychosocial aspects of living with haemophilia from the perspective of people with haemophilia (PWH), their families and their healthcare providers . Previous reports have presented the overall study methodology of HERO and the demographics of the patient and caregiver respondents, treatment‐related characteristics and access to care, the impact of haemophilia on interpersonal relationships, and data on pain interference and quality of life for PWH . However, there is a lack of publications that describe the status of PWH in Brazil and compare this status to that of other countries …”

Predictors of quality of life among adolescents and young adults with a bleeding disorder

“…To our knowledge, limited data are available regarding the HRQoL of AYAs with hemophilia. In contrast to previous surveys, such as Hemophilia Experiences, Results and Opportunities (HERO), that assessed psychosocial issues in PWH [31–33], we assessed adherence using the validated VERITAS scale and used the SF-36 (vs the EuroQoL-5 dimensions [EQ-5D]) to assess HRQoL. The SF-36 assesses domains such as vitality and social functioning, which are not included in the EQ-5D [34].…”

Improving comprehensive care in the haemophilia community: building on the HERO Study

“…Analysis of questionnaire data, completed by 675 PWH and 561 parents of children with haemophilia (CWH) [2][3][4], highlighted several positive life experiences about living with haemophilia, but also identified six areas for improvement [5]: physical burden, psychological burden, relationships, knowledge gaps in society, employment and access to care.…”

“…Inherited coagulation factor V deficiency (FVd), first described in 1947 by Owren is a rare autosomal recessive bleeding disorder with a prevalence of 10 The half-life of FV is reported to be 12-36 h with significant individual variation [1, 4,5]. Major surgery in FVd patients requires once or twice daily transfusions of fresh frozen plasma (FFP) to achieve FV levels of 15-20% and maintain FV trough levels of >10% [1,5].…”