Novo Nordisk announced today the start of a global survey into the psychological and social effects of haemophilia. The study, named HERO (Haemophilia Experiences, Results and Opportunities), will assess factors such as the attitudes of patients and their families to diagnosis and treatment, their aspirations and the social context of haemophilia. The study will include responses from over 1,300 people from 12 countries, and is the largest international research project ever carried out into the social and psychological impact of this condition.
The launch of the study marks World Haemophilia Day April 17 and the first findings will be presented at the World Federation of Haemophilia Congress in Buenos Aires, Argentina from 10 to 14 July 2010.
The study is divided into two phases. The first phase, based on 150 face-to-face interviews, will identify the most common issues affecting the haemophilia community. The second phase, based on a much larger data sample from 1,200 respondents, will illustrate how many people actually feel affected by the identified issues.
A range of psychosocial issues are currently discussed within the haemophilia community such as lack of self-esteem, impact on family life, living with pain and fear of a future with disabilities.
“Haemophilia has far-reaching consequences beyond the physical impact of the condition for people with haemophilia, their families and the people treating the condition,” said Charlotte Ersbøll, corporate vice president for Global Stakeholder Engagement at Novo Nordisk. “This new programme will help us to better understand these broader effects on the haemophilia community.”
“We are here to improve the lives of people with haemophilia and it is essential that their voice is heard,” commented Frederica Cassis, psychologist at the Haemophilia Center of the Hospital das Clinicas, São Paulo, Brazil. “This unique study will give us valuable insights into the broad impact of this condition and will provide us with new tools to deal with the barriers of further improving haemophilia care.”
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 and represents 20–25% of all patients with haemophilia. It is estimated that around 400,000 males have haemophilia A or B.
Headquartered in Denmark, Novo Nordisk is a global healthcare company with 87 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.