Afib Patient Survey Informed ISTH Presentation on Patient-Relevant Bleeding

July 5, 2023

  • Summary: Your input led to an ISTH presentation about the new concept of Patient-Relevant Bleeding
  • Reading time:  2–3 minutes

On June 25, 2023, Anthos Therapeutics, in collaboration with two internationally recognized patient advocacy groups, StopAfib.org and the National Blood Clot Alliance (NBCA), presented new data from a survey of patients about the impact of patient-relevant bleeding (PRB) on people taking anticoagulants. Patient-relevant bleeding is defined as bleeding not requiring medical intervention.

Patient-Relevant Bleeding Events Among Patients Taking Anticoagulant Medication was presented at the International Society on Thrombosis and Haemostasis’ (ISTH) annual meeting in Montreal.

We at StopAfib.org want to thank our afib patient community for participating in this survey in late 2022. It will enlighten clinicians about what we already know, including that taking anticoagulants (blood thinners) can dramatically disrupt our lives.

More than 3,000 patients participated in this anonymous, online global survey designed to better understand the so-called “minor” bleeding experienced by patients on anticoagulants. While bleeding events such as bruising, cuts, heavy menstrual cycles, and nose bleeds may not require medical care, they are still very concerning and disruptive to patients. They may result in patients making significant lifestyle changes and/or stopping their anticoagulants.

“While our doctors focus on managing major bleeds, they may overlook or dismiss these patient-relevant bleeds, leaving us feeling lost and unsupported. Thus, many may resort to taking measures into their own hands,” said Mellanie True Hills, Founder and Chief Executive Officer at StopAfib.org, American Foundation for Women’s Health. “We partnered with Anthos in this survey because they put patients first. Our healthcare teams can gain immense insight from these findings. We hope this encourages more open dialogue between patients and clinicians about the daily bleeding concerns patients live with.”

Of the 3,072 survey participants, 59% (1815) had experienced a bleeding problem. Of those, 54% had adjusted their lifestyle, 47% were affected emotionally, 29% had considered or stopped their anticoagulant, and 38% said it is “very important” to know about new treatment options with lower bleeding risk.

Note: At our patient conference in August, we will discuss these new Factor XI stroke prevention options that may have a lower bleeding risk and are now in clinical trials. To learn more about the conference, and register to attend in-person or via livestream, go to https://GetInRhythm.com. 

To learn more about the survey results, see: