Surveying patients’ experiences and perspectives on venous thromboembolism: gaps and opportunities in health delivery Open Access

1. Only 55% of patients were satisfied with how their VTE diagnosis was explained at diagnosis.

2. Critical educational gaps exist regarding anticoagulation, long-term management, and support resources.

Patient experience is an independent dimension of health care delivery. We aimed to capture patients’ experiences with venous thromboembolism (VTE) to improve health care delivery. A survey was developed by a multidisciplinary team of clinicians and patient advocates. Domains included patient demographics, health care experiences, perspectives, and potential gaps in healthcare received for VTE. The survey was distributed electronically between May-July 2023 through a patient advocacy group targeting individuals with a personal VTE history. The primary outcome was a binary indicator of patient satisfaction with how their VTE diagnosis was explained. Logistic regression was used to assess factors associated with satisfaction. Among 1,050 participants, the majority were from the United States (81%). Most respondents were female (81%), White (88%), and 71% between 40–69 years. Satisfaction with clinician explanation of VTE diagnosis was reported in 55% of participants. The likelihood of satisfaction increased as the time spent with a clinician at diagnosis increased (relative to <5 minutes (min), RR 1.65, 95% CI 1.36-2.02 for 6-10 min to RR 2.44, 95% CI 1.92-3.10 for 31-60 min). Factors associated with decreased likelihood of satisfaction included multiple visits to obtain VTE diagnosis (RR: 0.68, 95% CI 0.59-0.79) and not being given information at the time of diagnosis (RR: 0.69, 95% CI:0.61-0.79). From this large, international survey designed to capture patient experiences and gaps in VTE care delivery, we identified several areas for improvement. Specifically, enhancing patient education and spending longer with patients at diagnosis are opportunities to improve patient satisfaction with VTE care.