Haemophilia Experiences, Results and Opportunities (HERO) study: treatment-related characteristics of the population.
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.
Children's Hospital of Orange County and Center for Inherited Blood Disorders, Orange, CA, USA.
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D
Nugent
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Kalnins
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Querol
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Gregory
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Pilgaard
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Cooper
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Iorio
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003625:Data Collection; D005260:Female; D006297:Health Services Accessibility / Q000706:statistics & numerical data; D006467:Hemophilia A / Q000150:complications / Q000453:epidemiology* / Q000523:psychology / Q000628:therapy*; D006470:Hemorrhage / Q000150:complications; D006801:Humans; D008297:Male; D008875:Middle Aged; D010465:Perception; D055815:Young Adult
access; comprehensive care; haemophilia; psychosocial; treatment