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HERO Study Reveals Psychosocial Impact of Living With Hemophilia

Patient and caregiver results derived from the largest multinational psychosocial study of the hemophilia community in the U.S. were presented this week in Orlando, FL, at the National Hemophilia Foundation (NHF) 64th Annual Meeting. 

In total, four posters were accepted from the Hemophilia Experiences, Results and Opportunities (HERO) study, a comprehensive analysis of the experience of living with hemophilia. One of the posters featured in an oral presentation at the meeting.

Hemophilia is a rare blood clotting disorder. Internal bleeding into the joints, muscles, and other tissues can cause severe pain, joint damage, and disability. An estimated 20,000 people in the U.S. and 400,000 people worldwide have the disorder.

The HERO initiative aims to improve outcomes in hemophilia by calling for and enabling enhanced psychosocial support based on increased understanding and awareness of the issues. The HERO study examined the disorder's effect on interpersonal relationships, careers, access to care and quality of life.

"We worked with key physicians and advocacy groups to develop a comprehensive study that, for the first time, examines the impact of living with hemophilia on all aspects of a family's life, including interpersonal relationships, access to care, employment, and the quality of life," said Robert Gut, MD, PhD, VP Clinical Development & Medical Affairs Biopharmaceuticals, Novo Nordisk.

A total of 189 adults with hemophilia and 190 parents of children with hemophilia participated in the quantitative arm of the HERO research.  Highlights of the HERO study results include:

  • Interpersonal Relationships - Both adults with hemophilia and parents of a child with the disorder report supportive relationships with partners, family, and friends.
  • Employment - Despite physical disability experienced by adults with hemophilia and the challenges of caring for a child with the disorder, the majority of both groups have overcome these barriers to maintain employment.
  • Access to Care - The majority of adults with hemophilia and parents of a child with the disorder are satisfied with their medical care, but almost a quarter of the respondents report concerns about access to treatment due primarily to financial concerns.  Nearly 25 percent of participants also have difficulty accessing comprehensive care due to the distance to their local hemophilia treatment center. 
  • Quality of Life - At the time of the assessment, 71 percent of adults with hemophilia reported experiencing moderate or extreme pain, or discomfort, and 92 percent reported that pain interfered with their daily life in the past month. Quality-of-life assessments were lower for older people (over 41 years of age) with hemophilia, those with inhibitors, or those with joint complications. 

"Despite living with a chronic disorder that is often associated with significant pain, the majority of study participants report strong relationships with family and friends, active employment, and satisfaction with their medical care," says Diane Nugent, MD, Medical Director of Children's Hospital of Orange County's Hematology and Blood & Donor Services and Chief of its Specialists Division of Hematology. Nugent is an advisor to the HERO study. 

"While we've made numerous advances in our understanding of haemophilia, the HERO initiative helps us identify gaps in knowledge with much more comprehensive information straight from our patients and their caregivers," she adds.

"The HERO results reinforce the importance of the comprehensive care model for providing high-quality care to our community," says Val Bias, NHF CEO. "We are pleased to have served as an advisor to Novo Nordisk in development of the study and to have invited individuals with hemophilia and their caregivers to participate.  We are excited to explore the results and implications with them and to partner in publishing the findings of this landmark research."

HERO is an international, multidisciplinary initiative led by the HERO International Advisory Board and supported by Novo Nordisk as part of its Changing Possibilities in Hemophilia program. It is the largest multinational multimethod study of the psychosocial experience of people with hemophilia and consists of:

  • an extensive literature review to assess the existing literature and establish gaps in knowledge, published in Haemophilia in 2011;
  • qualitative research among 150 people with hemophilia, parents, and healthcare professionals from 7 countries; and
  • quantitative research among 1236 people (≥18 years of age) with hemophilia and parents of children with hemophilia (<18 years of age) from 10 countries.

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