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Novo Nordisk Announces U.S. Results of Biggest Multinational Psychosocial Study of Living with Hemophilia HERO (Hemophilia Experiences Results and Opportunities) is an international, multidisciplinary initiative led by the HERO International Advisory Board and this is supported by Novo Nordisk as part of its Changing Possibilities in Hemophilia® program. HERO initiative is the biggest multinational and multimethod study of the psychosocial experience of people with hemophilia and consists of: • An extended literature review to assess the existing literature and establish gaps in knowledge, published in Hemophilia in 2011. • Qualitative research among 150 people with hemophilia, parents, and healthcare professionals from different countries. • With quantitative research we found that 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. While attending the National Hemophilia Foundation (NHF) Annual Meeting in Orlando, Florida November 8-10, I was able to hear about the results of this unique study. Since I know and spend time with many people living with hemophilia, it was great to hear the researchers share the results of their observations and interviews with these folks. The human immunodeficiency virus (HIV) had a fundamental impact on quality of life, delivery of care, and directions of research efforts for the hemophilia community. Studies of psychosocial issues in hemophilia before and after the HIV crisis are reviewed here. Before this crisis, research addressed personality factors and coping, family functioning, impact of psychological factors on bleeding, effects of home treatment, and school functioning. After HIV problems surfaced, research know focused on psychosocial impact of the epidemic, HIV knowledge assessments, and HIV transmission prevention efforts. HIV-positive children with hemophilia haven't received sufficient attention. Future directions for research are suggested in such cases. “Despite living with a chronic disorder that is frequently associated with significant pain, the number 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. And Dr Nugent is an consultant to the HERO study. “While we’ve made numerous advances in our understanding of hemophilia, the HERO initiative helps us determine gaps in knowledge with much more inclusive information straight from our patients and their caregivers.”“The HERO results strengthen, 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 consultant to Novo Nordisk in development of the study and to have invited individuals with hemophilia and their health care provider to participate. We are excited to explore the results and implications with them and to partner in publishing the findings of this landmark research.” For more details visit Hemophilia, Volunteer Opportunities
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