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Global study finds people with haemophilia fight challenges in their professional career but succeed in completing education and getting a job
Paris, France (July 9, 2012) – The first results from a new global study mapping the psychosocial aspects of living with haemophilia show eight out of 10 people with haemophilia have experienced a negative impact of haemophilia on their professional career, with one in five believing they have lost a job because of haemophilia.i However, the findings from the study also show that 85% of people with haemophilia describe themselves as educated and only 8% are not able to find employment.(1)
The results are the first findings from the HERO (Haemophilia Experiences, Results and Opportunities) study and will be presented at the World Federation of Hemophilia 2012 World Congress in Paris 9–11 July 2012.(2) Besides employment, the HERO study has also examined relationships, sexual health, treatment and management of haemophilia, information and knowledge and quality of life. Findings from these areas will also be presented throughout the congress.
“Treatment of haemophilia has advanced greatly over the past decades, but psychosocial issues can still be a challenge for people with haemophilia, for example societal stigma,” Professor at Department of Clinical Epidemiology and Biostatics, McMaster University, Canada, and member of the HERO International Advisory Board, Alfonso Iorio said. “The insights from the HERO study will provide much needed evidence to support advocating for better comprehensive haemophilia care.”
Further data and background info on the HERO study will be available via the following link:
About the HERO study
HERO (Haemophilia Experiences, Results and Opportunities) is an international, multidisciplinary initiative led by the HERO International Advisory Board and is supported by Novo Nordisk. At the heart of the HERO initiative is the HERO study, the largest ever multinational multi-method study of the psychosocial experience of people with haemophilia, parents and healthcare professionals. The survey covers themes around employment, relationships, sexual health, treatment and management of haemophilia, information and knowledge and quality of life and consists of:
An extensive literature review to assess the existing literature and establish gaps in knowledge – published in Haemophilia (Cassis et al. 2011).(3)
Qualitative research among 150 people with haemophilia, parents and healthcare professionals from seven countries.
Quantitative research among 1,236 people (≥18 years of age) with haemophilia and parents of children with haemophilia (< 18) across 10 countries.
HERO aims to improve outcomes in haemophilia by calling for and enabling enhanced psychosocial support based on increased understanding and awareness of the issues.
Haemophilia 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 haemophilia A is approximately one case per 5,000 males, approximately 30% of whom have no family history. Haemophilia B occurs in one case per 25,000 males. It is estimated that around 400,000 males have haemophilia A or B.
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 haemophilia care, growth hormone therapy and hormone replacement therapy. For more information, visit novonordisk.com
Forsyth A, Gregory M and Iorio A on behalf of the HERO International Advisory Board. Demographic Characteristics of People with Haemophilia in the Haemophilia Experiences Results Opportunities (HERO) study. Presented at World Federation of Hemophilia 2012 World Congress, Paris, France. Session: POMO-Poster I Monday, Poster Board Number: 199.
Posters 22, 86, 87, 88, 148, 199, 200, 218 and oral presentation FP-MO-04.4 – MEDICAL at World
Federation of Hemophilia 2012 World Congress, Paris, France.
Cassis FRMY, Querol F, Forsyth A, Iorio A on behalf of the HERO International Advisory Board. Psychosocial aspects of haemophilia: a systematic review of methodologies and findings. Haemophilia 2011, 101-114.
Novo Nordisk A/S, 09.07.2012 (tB).