International Hemophilia Survey Suggests Psychosocial Challenges and Lack of Shared Decision Making
Some compelling results from the ‘Hemophilia Life Stages and Changes Global Survey’ were recently announced in a new press release. The survey was conducted by a global market research firm The Harris Poll and sponsored by Sanofi.
More than 2,700 participants, representing four continents and 11 countries, completed the survey, which was designed to enhance our understanding of the state of hemophilia care from various perspectives. To that end, 950 adults (18+ years of age) with hemophilia, 1080 caregivers (adults who provide care or support to an affected friend or family member), and 679 healthcare providers (HCPs) whose primary medical specialty is hematology and see/treat two or more hemophilia patients per month. The survey was conducted February 27-April 10, 2023.
Some common themes that arose from those surveyed centered on communication challenges, including disclosure issues and the emotional impacts of the disease. More than half of patients (51%) reported that they hide their symptoms at least once a week, while 68% avoid telling friends out of concern for being treated differently than their peers. In addition, 59% of patients indicated feeling anxiety at least once a week and 75% of hematologists reporting that their patients often feel depressed about their hemophilia.
Another prominent theme among participants was an expressed disengagement between patients and their HCPs, as 83% signaled the desire to play a far more active role in their healthcare, including specific decisions relevant to their treatment. A minority of patient participants (35%) believed that their HCP involved them in discussions regarding their treatment and considers their concerns when it comes to treatment, making a powerful argument that much more needs to be done to ensure that the shared decision-making model is implemented around the world. The majority of patient respondents (84%) also expressed a wish for additional treatment options.
“The robust scope and multiple, diverse perspectives included in this research enable us to paint a detailed picture of what it’s like to live with and manage this debilitating life-long condition throughout key aspects, milestones, and life events,” said Kathy Steinberg, Vice President of Media and Communications Research at The Harris Poll. “And that picture of life with hemophilia reveals unique challenges, impacts, and unmet needs that point to how patient care and outcomes could be improved for this population.”
Read the original press release to learn about the survey methodology and more detail about the results, including some eye opening contrasts amongst participating countries.
Source: Cision (PR Newswire), October 10, 2023