Novo Nordisk announces U.S. results of largest multinational psychosocial
study of living with hemophilia
Scientific posters highlight quality of life concerns and strong interpersonal
relationships at the National Hemophilia Foundation's 64th Annual Meeting
ORLANDO, Fla., Nov. 7, 2012
ORLANDO, Fla., Nov. 7, 2012 /PRNewswire/ --U.S. patient and caregiver results
derived from the largest multinational psychosocial study of the hemophilia
community are being presented at the National Hemophilia Foundation (NHF)
64^th 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 will be featured in an oral presentation at the meeting.
HERO examined the disorder's effect on interpersonal relationships, careers,
access to care and quality of life. 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.
"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
In the United States, 189 adults with hemophilia and 190 parents of children
with hemophilia participated in the quantitative arm of the HERO research.^1
Highlights of the HERO study results include:
oInterpersonal Relationships – Both adults with hemophilia and parents of a
child with the disorder report supportive relationships with partners,
family, and friends.^2
oEmployment – 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. ^ 1
oAccess to Care – The majority of adults with hemophilia and parents of a
child with the disorder are satisfied with their medical care,^3 but
almost a quarter of the respondents report concerns about access to
treatment due primarily to financial concerns. ^ 3 Nearly 25% of
participants also have difficulty accessing comprehensive care due to the
distance to their local hemophilia treatment center.^3
oQuality of Life – At the time of the assessment, 71% of adults with
hemophilia reported experiencing moderate or extreme pain, or
discomfort,^4 and 92% reported that pain interfered with their daily life
in the past month.^4 Quality of life assessments were lower for older
people (over 41 years of age) with hemophilia, those with inhibitors, or
those with joint complications.^4
"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," added 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. Dr Nugent is an advisor
to the HERO study. "While we've made numerous advances in our understanding
of hemophilia, the HERO initiative helps us identify gaps in knowledge with
much more comprehensive information straight from our patients and their
"The HERO results reinforce the importance of the comprehensive care model for
providing high-quality care to our community," said 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."
The U.S. results from the HERO study appear as posters (SPI 38, 41, 42 and 43)
at the National Hemophilia Foundation 64^th Annual Meeting from November 8-10,
2012 at the Orlando Marriott World Center.
About the HERO study
HERO (Hemophilia Experiences, Results and Opportunities) 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®
The HERO initiative is the largest multinational multimethod study of the
psychosocial experience of people with hemophilia and consists of:
oAn extensive literature review to assess the existing literature and
establish gaps in knowledge, published in Haemophilia in 2011.
oQualitative research among 150 people with hemophilia, parents, and
healthcare professionals from 7 countries.
oQuantitative research among 1236 people (greater than or equal to 18 years
of age) with hemophilia and parents of children with hemophilia (<18 years
of age) from 10 countries.
Hemophilia is a rare blood clotting disorder. Internal bleeding into the
joints, muscles, and other tissues can cause severe pain, joint damage, and
disability. The worldwide incidence of hemophilia A is approximately one case
per 5000 males, approximately 30% of whom have no family history. Hemophilia
B occurs in one case per 25,000 males and represents 20%–25% of all patients
with hemophilia. Globally, it is estimated that 400,000 people have
hemophilia^5; ^ in the United States, it is estimated that 20,000 people have
About Novo Nordisk
Headquartered in Denmark, Novo Nordisk is a global healthcare company with 89
years of innovation and leadership in diabetes care. The company also has
leading positions within hemophilia care, growth hormone therapy and hormone
replacement therapy. For more information, visit novonordisk.com.
About the National Hemophilia Foundation
The National Hemophilia Foundation (NHF) is dedicated to finding better
treatments and cures for inheritable bleeding disorders and to preventing the
complications of these disorders through education, advocacy and research.
Established in 1948, NHF is based in New York City with 51 chapters throughout
the United States. NHF's programs, initiatives and events are made possible
through the generosity of individuals, corporations and foundations as well as
through a cooperative agreement with the Centers for Disease Control and
Prevention (CDC). For more information, visit NHF online at
^1 Nugent D, Guelcher C, Forsyth A, et al. Hemophilia Experiences, Results
and Opportunities (HERO) study: US respondent demographics and impact of
diagnosis on career and lifestyle decisions. Poster SPI 38. Presented at
National Hemophilia Foundation's 64^th Annual Meeting, Orlando, Fla.
^2 Guelcher C, Rice M, Forsyth A, et al. Hemophilia impacts interpersonal
relationships, intimacy and family dynamics: US results from the Hemophilia
Experiences, Results and Opportunities (HERO) study. Poster SPI 41.
Presented at National Hemophilia Foundation's 64^th Annual Meeting.
^3 Nugent D, Guelcher C, Rice M, et al. US results from the Hemophilia
Experiences, Results and Opportunities (HERO) study affirm hemophilia
treatment centers (HTCs) are central to hemophilia care, yet financial
concerns and distance may limit access to treatment for some patients. Poster
SPI 43. Presented at National Hemophilia Foundation's 64^th Annual Meeting,
^4 Forsyth A, Guelcher C, Nugent D, et al. Hemophilia impacts quality of
life (Q0L) in adults PWH at an early age, with pain a contributing factor: US
results from the Hemophilia Experiences, Results and Opportunities (HERO)
Study. Poster SPI 42. Presented at National Hemophilia Foundation's 64^th
Annual Meeting, Orlando, Fla.
^5 Srivastava A, Brewer AK, Mauser-Bunschoten, EP, et al. Guidelines for
the management of hemophilia. Haemophilia (2012) 1-47.
^6 Centers for Disease Control and Prevention. Facts. Centers for Disease
Control and Prevention. http://www.cdc.gov/ncbddd/hemophilia/facts.html.
Accessed August 27, 2012.
SOURCE Novo Nordisk
Contact: An Phan, Novo Nordisk, +1-609-987-4893, firstname.lastname@example.org
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