Abstract
PURPOSE: Cancer-associated thrombosis (CAT) is a significant cause of morbidity and mortality. Significant gaps exist in adherence to guidelines suggesting the use of primary thromboprophylaxis in high-risk patients with cancer. Our goal was to understand gaps in patients' awareness of CAT and thromboprophylaxis to better inform future outreach efforts within the framework of shared decision making between patients and providers. PATIENTS AND METHODS: A bilingual (in English and Spanish) questionnaire was designed for individuals with a history of cancer or active cancer by a multidisciplinary expert group including patient advocates, pilot tested and electronically circulated through nonprofit patient advocacy groups for thrombosis and cancer in the United States. Survey domains included (1) risk factor awareness, (2) clinical presentation/diagnosis, (3) treatment, and (4) prevention. We received responses from 140 patients, 41% of whom were actively receiving cancer treatment. RESULTS: Patients demonstrated significant knowledge gaps with regard to CAT, with 61% of patients being unaware of the higher risk of thrombosis in cancer. Patients were open to receiving more information about CAT, including 80% who would like to receive more information from their clinician. A total of 71% of patients would consider the use of thromboprophylaxis if discussed with their provider; however, patients endorsed several concerns about its use including bleeding risk, polypharmacy, and medication interactions. CONCLUSION: Our study demonstrated that there remain significant knowledge gaps regarding CAT and thromboprophylaxis in American patients with cancer. Clinicians remain a trusted source of information about clotting, and a majority of patients are willing to consider thromboprophylaxis if discussed with their provider. Patient education will be an important aspect of increasing adherence to thromboprophylaxis guidelines in high-risk patients with cancer.