In 2023, NBCA and our Council of Emerging Researchers in Thrombosis (CERT) launched the first large-scale, international survey to capture blood clot patient experiences and identify gaps and opportunities in care.
Thank you to the more than 1,050 survivors who took the survey. Your voice is being heard and prioritized by the medical community.
Because of this survey, the findings are influencing care at the highest levels:
- Presented as a poster at the 2024 American Society of Hematology (ASH), one of the world’s largest gatherings of blood experts.
- Published on ScienceDirect so clinicians and researchers worldwide can learn the survey’s insights.
- Shared at national medical meetings, including last week’s Venous Experts Symposium presented by Argon Medical.
The main findings of the survey:
- Only 55% of patients were satisfied with how their diagnosis was explained.
- More than 1 in 3 patients were misdiagnosed and needed multiple visits before getting the correct diagnosis.
- Just 15% received printed or electronic information at diagnosis, yet many wanted details on recurrence risk, mental health, and support groups (like NBCA offers); only about 2% reported receiving these resources.
- Many felt their symptoms weren’t taken seriously, with perceived biases linked to age, gender/sex, race/ethnicity, or insurance status.
These findings clearly state that blood clot patients want better explanations, faster and more accurate diagnoses, and stronger support resources. They’re already sparking conversations among the clinicians about how to close these gaps.
Read the full study here.