PARIS—Results of a large study suggest that 8 in 10 hemophilia patients feel
their disorder has had a negative impact on their career.
In fact, 1 in 5
patients said they have lost a job because of their condition. However, only 8% said they were unable to find employment because of it.
These findings were presented at the World Federation of Hemophilia 2012 World Congress. The data are part of the HERO study, which
evaluated the psychosocial aspects of living with hemophilia. The study
was sponsored by Novo Nordisk.
“Treatment of hemophilia has advanced greatly over the past decades, but psychosocial issues can still be a challenge for people with hemophilia . . . ,” said Alfonso Iorio, MD, PhD, a member of the HERO International Advisory Board and a professor at McMaster University in Canada.
With this in mind, HERO researchers examined hemophilia’s effects on relationships, sexual health, and quality of life. The investigators also assessed treatment and management of the disorder, patients’ knowledge and education levels, and how hemophilia has impacted their professional life.
For the career analysis, researchers interviewed 605 patients with hemophilia. Forty percent of patients said their hemophilia played a major role in their choice of profession or job training, but 21% of patients said their disorder had no impact on their job choice.
Thirty percent of patients said their current treatment allows them to work in most situations. But 21% of patients said they have to restrict their hours due to their hemophilia, and 17% said they must work flexible hours.
Twenty-four percent of patients said they have voluntarily left a job because of their hemophilia, and 22% thought they lost a job because of their disorder.
Twenty-two percent of patients believed they were not hired for a job because of their hemophilia, and 14% felt they had not received a promotion because of it. But 10% of patients said their disorder actually helped them land a job.
These results were presented at the World Federation of Hemophilia 2012 World Congress on Monday as poster 199. Other results from the HERO study will also be presented at the meeting, which is taking place July 8-12.
“The insights from the HERO study will provide much-needed evidence to support advocating for better comprehensive hemophilia care,” Dr Iorio said.
