Unmet needs and barriers in venous thromboembolism education and awareness among people living with cancer: a global survey

Nicola Potere; Isabelle Mahé; Pantep Angchaisuksiri; Gabriela Cesarman-Maus; Chee Wee Tan; Anila Rashid; Farjah H AlGahtani; Egidio Imbalzano; Nick van Es; Avi Leader; Edeghonghon Olayemi; Ettore Porreca; Fionnuala Ní Áinle; Helen C Okoye; Matteo Candeloro; Didier Mayeur; Luca Valerio; R Cary Clark; Lana A Castellucci; Stefano Barco; Marcello Di Nisio; World Thrombosis Day Steering Committee and Collaborators

doi:10.1016/j.jtha.2024.03.019

Unmet needs and barriers in venous thromboembolism education and awareness among people living with cancer: a global survey

J Thromb Haemost. 2024 Apr 4:S1538-7836(24)00177-6. doi: 10.1016/j.jtha.2024.03.019. Online ahead of print.

Authors

Nicola Potere¹, Isabelle Mahé², Pantep Angchaisuksiri³, Gabriela Cesarman-Maus⁴, Chee Wee Tan⁵, Anila Rashid⁶, Farjah H AlGahtani⁷, Egidio Imbalzano⁸, Nick van Es⁹, Avi Leader¹⁰, Edeghonghon Olayemi¹¹, Ettore Porreca¹², Fionnuala Ní Áinle¹³, Helen C Okoye¹⁴, Matteo Candeloro¹², Didier Mayeur¹⁵, Luca Valerio¹⁶, R Cary Clark¹⁷, Lana A Castellucci¹⁸, Stefano Barco¹⁹, Marcello Di Nisio²⁰; World Thrombosis Day Steering Committee and Collaborators

Affiliations

¹ Department of Medicine and Ageing Sciences, School of Medicine and Health Sciences, "G. D'Annunzio" University, Chieti, Italy. Electronic address: nic.potere@gmail.com.
² Innovative Therapies in Haemostasis, INSERM UMR_S1140, INNOVTE-FRIN Université Paris Cité, Assistance Publique des Hôpitaux de Paris, Hôpital Louis Mourier, Paris, France.
³ Division of Hematology, Department of Medicine, Ramathibodi Hospital, Mahidol University, Bangkok, Thailand.
⁴ Department of Hematology, Instituto Nacional de Cancerología, Mexico City, Mexico.
⁵ Department of Hematology, Royal Adelaide Hospital, University of Adelaide, Adelaide, South Australia, Australia.
⁶ Section of Haematology, Department of Pathology & Laboratory Medicine/Oncology, Aga Khan University Hospital, Karachi, Pakistan.
⁷ Division of Hematology-Oncology, Oncology Center, Department of Medicine, King Saud University, Riyadh, Saudi Arabia.
⁸ Department of Clinical and Experimental Medicine, University of Messina, Messina, Italy.
⁹ Department of Vascular Medicine, Amsterdam UMC - University of Amsterdam, Amsterdam, The Netherlands; Amsterdam Cardiovascular Sciences, Pulmonary Hypertension and Thrombosis, Amsterdam, The Netherlands.
¹⁰ Institute of Hematology, Davidoff Cancer Center, Rabin Medical Center, Petah Tikva; Sackler Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel; Department of Medicine, Hematology Service, Memorial Sloan Kettering Cancer Center, New York City, New York, USA.
¹¹ Department of Hematology, University of Ghana Medical School, Accra, Ghana.
¹² Department of Innovative Technologies in Medicine and Dentistry, School of Medicine and Health Sciences, "G. D'Annunzio" University, Chieti, Italy.
¹³ Department of Hematology, Mater Misericordiae University Hospital and Rotunda Hospital, Dublin, Ireland; School of Medicine, University College, Dublin, Ireland.
¹⁴ Department of Hematology and Immunology, College of Medicine, University of Nigeria, Enugu, Nigeria.
¹⁵ Medical Oncology, Transversal Department of Supportive Care, Association Francophone des Soins Oncologiques de Support, Centre Georges-François Leclerc, Dijon, France.
¹⁶ Centers for Thrombosis and Hemostasis and Cardiology, University Hospital Mainz, Mainz, Germany.
¹⁷ Programs and Education, International Society on Thrombosis and Haemostasis, Carrboro, North Carolina, USA.
¹⁸ Department of Medicine, Ottawa Hospital Research Institute and University of Ottawa, Ottawa, Ontario, Canada.
¹⁹ Centers for Thrombosis and Hemostasis and Cardiology, University Hospital Mainz, Mainz, Germany; Department of Angiology, University Hospital Zurich, Zurich, Switzerland.
²⁰ Department of Medicine and Ageing Sciences, School of Medicine and Health Sciences, "G. D'Annunzio" University, Chieti, Italy.

PMID: 38582384
DOI: 10.1016/j.jtha.2024.03.019

Abstract

Background: Venous thromboembolism (VTE) is a major preventable cause of morbidity, disability, and mortality in subjects with cancer. A global appraisal of cancer-associated VTE education and awareness is not available.

Objectives: To evaluate VTE-related education, awareness, and unmet needs from the perspective of people living with cancer using a quantitative and qualitative approach.

Methods: This cross-sectional study used data from an online-based survey covering multidimensional domains of cancer-associated VTE. Data are presented descriptively. Potential differences across participant subgroups were explored.

Results: Among 2262 patients with cancer from 42 countries worldwide, 55.3% received no VTE education throughout their cancer journey, and an additional 8.2% received education at the time of VTE diagnosis only, leading to 63.5% receiving no or inappropriately delayed education. When education was delivered, only 67.8% received instructions to seek medical attention in case of VTE suspicion, and 36.9% reported scarce understanding. One-third of participants (32.4%) felt psychologically distressed when becoming aware of the potential risks and implications connected with cancer-associated VTE. Most responders (78.8%) deemed VTE awareness highly relevant, but almost half expressed concerns about the quality of education received. While overall consistent, findings in selected survey domains appeared to numerically differ across age group, ethnicity, continent of residence, educational level, metastatic status, and VTE history.

Conclusion: This study involving a large and diverse population of individuals living with cancer identifies important unmet needs in VTE-related education, awareness, and support across healthcare systems globally. These findings unveil multilevel opportunities to expedite patient-centered care in cancer-associated VTE prevention and management.

Keywords: access; and evaluation; healthcare quality; neoplasms; patient preference; surveys and questionnaires; value-based healthcare; venous thromboembolism.