Living with a bleeding disorder affects more than just your physical health. Psychosocial issues also limit your ability to lead the life you want. For example, people with hemophilia manage their emotional responses to diagnosis and treatment, and learn to live productive lives while managing chronic pain. They also decide how to communicate with others at work and school about their bleeding disorders. Despite the varied needs of people with bleeding disorders, until recently, most of the research surrounding hemophilia focused only on managing the disorder.
That’s no longer the case. The Haemophilia Experiences, Results and Opportunities (HERO) International study, supported by Novo Nordisk and completed in 2014, was conducted in 11 countries and surveyed 1,386 people. The National Hemophilia Foundation (NHF) participated in developing the questions, promoting the survey and answering US respondents’ questions. HERO was the largest multinational study ever conducted of psychosocial issues for people with bleeding disorders. It revealed that people with hemophilia face challenges in employment, relationships and public knowledge of their bleeding disorder. The burdens they cope with include mobility issues, uncontrolled pain and discomfort, and anxiety and depression.
“The HERO study was needed to look at the whole person rather than always focusing on medical management,” says Angela Forsyth, PT, program director for Cincinnati-based REBUILD, a physical therapy program for people with hemophilia. She served on the HERO International Advisory Council, which guided the study. “It asked quality-of-life questions that allow us to better serve the needs of our patients in ways that will improve their overall lives.”
Learning from results
The HERO study started with a literature analysis, which examined all previously published research on psychosocial issues for people with hemophilia. It revealed that there were few studies assessing the impact of psychosocial issues on people with hemophilia and their caregivers. A qualitative analysis, including face-to-face interviews with providers and consumers, helped discover common themes and develop further questions in the qualitative study, Forsyth says.
In the quantitative analysis phase of the study, researchers surveyed people with hemophilia and their family members around the world. This comprehensive, international approach resulted in a detailed picture of the quality-of-life issues that people with hemophilia and their loved ones face.
One of the study’s most surprising findings was that 51% of respondents reported that pain is a daily interference in their lives, says Forsyth. Almost 90% said pain had interrupted their daily lives in the past four weeks.
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Such results show that hemophilia can impair quality of life, not only by the experience of pain or discomfort, but also through decreased mobility, depression and anxiety.
The lack of general public knowledge about hemophilia can lead to increased problems. Almost ¹/³ of people with hemophilia, and 41% of parents of children with hemophilia, report having a negative experience when telling someone about their or their child’s hemophilia. But in spite of the psychological impact of ongoing pain and lack of understanding, less than a quarter of people with hemophilia say they have received counseling in the past five years.
Though more than half of the survey respondents with hemophilia are employed, many say the condition makes work life difficult, and may affect their chances of employment or a promotion. Most participants—80% of adults with hemophilia and 63% of parents of children with hemophilia—report that the condition has a negative impact on their work lives.
In addition, 36% of adult respondents report that hemophilia affects their opportunities to develop close relationships with prospective partners. More than half said hemophilia has a negative effect on their sex lives.
On the other hand, the study also showed a signature resilience and optimism. Most respondents reported satisfying personal relationships, jobs and work relationships. “Even though their lives are affected by living with pain and the complications of their disorders, they are still largely satisfied and optimistic about the future,” Forsyth says. “I love that about this community.”
Taking action
The HERO study revealed gaps in education and care. Correcting them could improve quality of life for people with bleeding disorders and their families all over the world. Providers and organizations serving the bleeding disorders community are using this information to better focus their activities in areas that will make a difference for those they serve.
“We healthcare providers now have a lot of data that will help us be able to focus on treatment strategies that can advance care and provide the care our patients need,” Forsyth says. For example, the HERO study revealed education topics, tools and information that could be helpful to people with bleeding disorders.
NHF’s new collaborating in care initiative
In response to the findings of the HERO study, NHF launched its Collaborating in Care Initiative in September 2014. The new program will feature a series of educational activities for patients with hemophilia and their families. Its goal is to close the gaps in education identified in the survey data, says Christa Dardaganian, NHF’s senior director of strategic innovation.
The Collaborating in Care Initiative will present these six educational modules over the next three years:
- Pain management and communicating with your provider about pain
- Personal relationships and intimacy
- Dealing with depression and anxiety
- Communicating with employers and colleagues
- Handling disclosure in a variety of school, work and social situations
- Ways to advocate effectively with healthcare providers, schools, employers, family and friends
Each module will be delivered through the NHF chapter network via lectures, panel discussions and multimedia presentations. There will also be moderator-led breakout groups, role playing, questions and answers, and interactive polling, says Jessica Morrison, MS, NHF’s program manager for this project. Healthcare professionals from throughout the hemophilia treatment center network will serve as presenters and facilitators.
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People with hemophilia and members of their support network make up the target audience for the educational modules. “We hope that by improving knowledge of comprehensive management of hemophilia, these modules can help people to improve physical health, emotional well-being and overall quality of life,” Morrison says.
Each module topic will be offered 10 times over three years, in various formats and locations, for a total of 60 presentations. With an anticipated 50 participants per presentation, NHF expects to reach at least 3,000 learners with these programs. Four programs on the first module have already been scheduled in 2015 at chapter events.
Collaborating in Care also plans to offer an ongoing webcast of each module. The online component is supported by an educational grant from Novo Nordisk and will facilitate an even broader reach for these programs. “This is the largest educational program series that NHF has ever developed for the bleeding disorders community,” Dardaganian says.
The HERO study has already begun spawning other questions for continued research. Novo Nordisk has offered grants for projects that will conduct further research into quality-of-life issues for people with hemophilia and their families, Forsyth says.
“Through this program, we are showing our commitment to improving the quality-of-life issues that were identified in the HERO study and to helping people with bleeding disorders live fuller, more satisfying lives,” says Dardaganian.