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5043 Surveying Patients’ Experiences and Perspectives on Venous Thromboembolism Care: An International Study to Identify Gaps and Opportunities in Health Care Delivery

Program: Oral and Poster Abstracts
Session: 901. Health Services and Quality Improvement - Non-Malignant Conditions: Poster III
Hematology Disease Topics & Pathways:
Clinical Practice (Health Services and Quality)
Monday, December 11, 2023, 6:00 PM-8:00 PM

Rushad Patell, MBBS1, Laura Dodge, ScD2*, Ang Li, MD, MS3, Anna L Parks, MD4, Jordan K Schaefer, MD5, Alejandra Gutierrez Bernal, MD6*, Shruti Chaturvedi, MBBS7, Anjlee Mahajan, MD8, Jori E. May, MD9, William Robertson10*, Leslie Lake11* and Dana E. Angelini, MD12

1Division of Hematology/Oncology, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA
2Department of Epidemiology, Harvard T.H. Chan School of Public Health, Boston, MA
3Section of Hematology-Oncology, Department of Medicine, Baylor College of Medicine, Houston, TX
4Department of Medicine, Division of Hematology & Hematologic Malignancies, University of Utah, Salt Lake City, UT
5Division of Hematology/Oncology, Department of Internal Medicine, University of Michigan, Ann Arbor, MI
6University of Minnesota, Minneapolis
7Division of Hematology, Johns Hopkins School of Medicine, Baltimore, MD, BALTIMORE, MD
8University of California, Davis, CA
9Department of Medicine, Division of Hematology/Oncology, University of Alabama at Birmingham, Birmingham, AL
10Weber State University, Ogden, UT
11National Blood Clot Alliance, Philadelphia, PA
12Taussig Cancer Institute, Department of Hematology and Medical Oncology, Cleveland Clinic, Cleveland, OH


Patient experience is a well-recognized, independent dimension of health care delivery. Although considerable progress has been made in the diagnosis and management of venous thromboembolism (VTE), data on the patient experience are lacking. We aimed to capture patients’ experiences with VTE and anticoagulation in order to prioritize efforts to improve VTE health care delivery.


An IRB-approved survey was developed with a multidisciplinary team of clinicians and patient advocates. The survey domains included patient demographics, health care experiences, perspectives, and potential gaps in healthcare received for VTE. The survey was pilot tested and subsequently distributed electronically from May-July 2023 through an international patient advocacy group targeting individuals with personal history of VTE. Data are described as counts and proportions. We used log binomial regression to calculate the risk ratios (RR) and 95% confidence intervals (CI) of outcomes associated with seeing a hematologist during or after hospital admission.


Of a total of 1,050 participants, the majority were from the US (81%), including 49 states and the District of Columbia. A response rate could not be calculated given that the web-based survey was openly distributed. The majority of respondents were women (81%), 88% identified as white, and 71% were age 40–69 years. Most patients (68%) experienced their first VTE event >12 months prior to the study, 36% had >1 VTE events and the majority (62%) were diagnosed in the emergency department.

Over one-third (35%) of respondents reported not receiving the correct diagnosis the first time they presented to medical care and 50% of these participants had at least 3 health care visits before reaching the correct diagnosis. The majority (93%) recall information regarding their VTE diagnosis was provided by physicians or advanced practitioners, 65% reported this conversation was <10 minutes, and only 55% felt the diagnosis was explained to their satisfaction. (Table) A minority (16%) of patients received printed or electronic information at the time of diagnosis. Almost all (97%) participants were treated with anticoagulation, but only 48% recalled being provided specific information about the medication including risks and benefits. Only 24% of 563 respondents who menstruate recall discussing the impact of anticoagulation on menstruation with providers, and all recalled discussing this only after they developed anemia or changes in their menstrual flow. Of the 105 participants who were offered the opportunity to speak with a health care advocate, most (73%) accepted it; of those not offered an advocate, 88% reported that they would have accepted the opportunity. Only 53% of respondents reported access to providers for questions regarding their VTE diagnosis.

Of 702 patients who were admitted to the hospital for VTE, 32% reported returning to health care, as their symptoms did not improve or worsened, and 30% of these patients were readmitted. Most admitted patients (89%) reported receiving some information about VTE at discharge, but the information received did not match the topics patients wanted. For example, patients most frequently wanted information about support groups (65%), mental health (65%), recurrence risk (55%) and prevention strategies (49%), but few received this information (2%, 2%, 17%, and 33%, respectively (Figure).

Most patients were seen by hematologists following discharge (59%) or during hospitalization (35%). Among admitted patients, those who saw a hematologist either during or after admission were significantly more likely to receive information about their VTE (RR: 1.15, 95% CI: 1.06–1.24) and about anticoagulation (RR: 1.23, 95% CI: 1.04–1.45) at discharge compared to patients who did not see a hematologist.


In this first large-scale international survey to capture patient experiences and gaps in VTE care delivery, we identified several potential areas for improvement. Efforts to enhance patient education could improve the patient experience. Further research could explore if better education translates to improved medication adherence, management of bleeding, avoiding polypharmacy, and ultimately clinical outcomes. Professional societies and patient advocacy groups can partner to build resources to improve the quality of care and patient satisfaction for people with VTE.

Disclosures: Schaefer: Pfizer: Consultancy. Chaturvedi: Alexion: Consultancy, Other: Advisory board participation; Sobi: Honoraria; Takeda: Other: Advisory board participation; Sanofi Genzyme: Consultancy; Sanofi: Other: Advisory board participation.

*signifies non-member of ASH