Survey Outlines Top Concerns Among Hemophilia Patients in Central Europe

Mobility problems, bleeding, pain, and uncertainly in daily life are the biggest challenges people with hemophilia are facing, according to a survey from six central European countries.

Additionally, while most respondents, including caregivers, felt well informed on hemophilia, they continue to seek further education on the condition and new treatment options.

Findings from the survey were reported in the study, “A Cross-National Survey of People Living with Hemophilia: Impact on Daily Living and Patient Education in Central Europe,” published in the journal Patient Preference and Adherence.

Central Europe comprises a diverse community of varying socioeconomic conditions and healthcare systems, in which data on the level of hemophilia patient education and how they prefer to receive information is scarce.

Staying informed and well educated becomes increasingly important in light of new therapies and modern health monitoring technologies.

To assess patient and caregiver health education on hemophilia and to better understand how these groups sought out information, a team of researchers from institutions throughout Central Europe conducted a survey in six countries — Croatia, Czech Republic, Slovenia, Slovakia, Bulgaria, and Hungary — between April 1 and Oct. 15, 2020.

The self-administered questionnaire contained 22 questions covering respondents’ level of hemophilia education, preferences for receiving information related to the disease, and challenges in daily life, including the effect of the global COVID-19 pandemic.

Of the 364 people who completed the survey, 232 were patients with hemophilia, and 132 were caregivers for someone with the disease. Most people with hemophilia (81.9%) were adults older than 25, and most caregivers (80.3%) were the parents of young people with hemophilia who were no more than 25.

“Although the majority, consisting of 70% of the respondents, reported being well educated about hemophilia, most of them still sought additional information, highlighting the need for continuous patient education,” Atanas Banchev, MD, the study’s lead author, said in a video abstract.

This result was consistent across all countries surveyed.

Both people living with hemophilia and their caregivers preferred to get information from physicians (68%), followed by patient associations (59.1%), and digital media, such as the internet and social media (56.3%).

Regarding social media, information sources used most often included Facebook (66.5%), YouTube (49.2%), Facebook Messenger (45%), and Instagram (19.2%). Although respondents of all ages tended to rely on digital media to a similar degree, roughly twice as many people relied on it in Czech Republic than in Bulgaria.

The amount of time spent in a physician’s office did not affect respondents’ perceptions of remaining sufficiently informed.

Most respondents (97.8%) reported having interest in obtaining more information on various hemophilia-related topics. These included new treatment options and technologies, preventing long-term complications, sports and travel, school life, and how to reduce pain and deal with mobility restrictions.

According to respondents, the most frequently reported daily challenges associated with the disease were mobility problems (41.8%), sudden or unexpected bleeding (38.5%), pain (35.4%), and uncertainty concerning which activities they could or could not do (25%).

More than half the participants appeared to cope well with these challenges, with 25–41% reporting that these had a moderate to severe impact on their life. Over half of respondents, however, reported moderate to severe impacts related to mobility or hobby choice.

The changes to daily life caused by COVID-19 tended to have an overall reduced impact.

“Approximately half of the people with hemophilia and their caregivers reported no major change [in] living with hemophilia during the first wave of the COVID-19 pandemic,” Banchev said. “However, importantly, 12.9% of the respondents reported experiencing anxiety and mental pressure, living with hemophilia during the COVID-19 pandemic.”

To the best of the researchers’ knowledge, this is the only study covering how hemophilia affects everyday life, how well educated patients are, and how they prefer to find information in central Europe.

“Based on our central European survey, hemophilia mostly affects people’s lives by causing mobility difficulties, unexpected bleeding, pain, and uncertainty in daily activities,” they concluded in the study, adding that the fact that most respondents continue to seek out more information highlights “the need for continuous personalized patient education to cope with present challenges.”