The Problem
The estimated incidence of cancer-associated thrombosis (CAT) is increasing over time and ranges from 1.6% to 6.6%, depending on the primary tumor site and type, disease stage, cancer-directed therapies, and comorbidities [1]. CAT is the second cause of death after cancer itself. Experiencing CAT during the cancer journey complicates cancer management and causes significant psychosocial distress for patients/caregivers and worse quality of life [2-4]. CAT often requires long-term anticoagulation, which exposes patients to the risk of life-threatening bleeds. Hence, CAT prevention is critical.
Thromboprophylaxis with low molecular weight heparin or direct factor X inhibitors (apixaban or rivaroxaban) is currently not routinely recommended but should be considered individually in high-risk ambulatory cancer patients. Next to pharmacological prophylaxis, adequate education and awareness of patients and their caregivers about the risk, recognition, and implications of CAT are essential elements for effective prevention.
The World Thrombosis Day’s Initiative
CAT can often be underestimated, which may translate into sub-optimal commitment and communication effectiveness by healthcare professionals in transferring knowledge about CAT. The American Society of Clinical Oncology (ASCO) recently underlined the need for oncology teams to provide adequate CAT education to people living with cancer and caregivers, thus emphasizing the importance of CAT awareness throughout the cancer journey. Patient perception and experience after being diagnosed with CAT have been evaluated [2-4]. However, limited research has been carried out to assess the level and contents of CAT education and knowledge among the broad population of individuals with cancer, to whom intensive preventive efforts should be addressed.
In 2018, the European Cancer Patient Coalition (ECPC) conducted a web-based survey involving cancer patients/survivors and caregivers across six European countries [5]. The results of this important study showed an alarmingly low patient perception of CAT and poor knowledge regarding predisposing factors, actionable preventative measures, and clinical manifestations of CAT [6]. The World Thrombosis Day movement, in collaboration with the International Society on Thrombosis and Haemostasis (ISTH), launched an ongoing global survey to provide an updated snapshot of CAT awareness among a comprehensive, multiethnic, and multicultural population of individuals with cancer, seeking to identify unmet needs, barriers and inequalities in CAT education worldwide.
Voice to Patients Preliminary Survey Results
Preliminary findings of this patient-centered initiative were released on World Thrombosis Day 2022. Seven hundred forty-nine cancer patients/survivors from 27 countries or territories completed the survey. The majority were females; 38% identified as White, 23% as Hispanic/Latino, 16% as Asian, and 10% as Black/African American. Respondents resided in Europe (32%), Latin America (26%), Asia (17%), the Middle East (13%), and Africa (10%). The most common primary cancers were breast (25%), hematopoietic/lymphoid (16%), lung (14%), and gastrointestinal (12%) [7].
Almost two out of three participants (62%) did not receive education about CAT and were unaware of the potential risk of experiencing venous thromboembolism during their cancer journey [7].
Over two-thirds of respondents (69%) were not educated to recognize the signs and symptoms of thromboembolism, and only a minority was provided with instructions to seek clinical consultation if they suspected CAT [7].
One in five participants (26%) reported current or prior use of anticoagulants for treating venous thromboembolism, and a similar proportion reported anticoagulant exposure for other indications. Only in a minority of these patients were the need and risks of anticoagulation periodically re-assessed. Similarly, a minority felt informed about the potential bleeding risk associated with anticoagulants. Almost 70% of participants reported never being involved in a medical discussion considering the possibility of primary thromboprophylaxis [7].
The vast majority of respondents (85%) rated CAT education as highly relevant, but more than half (52%) felt that the education provided by healthcare professionals was insufficient. In addition, one in five cancer patients surveyed (22%) reported psychological distress when learning about CAT and anticoagulation [7].
Implications for Cancer Patients and Care Pathways
This contemporary survey involving a large population of cancer patients/survivors with diverse ethnic, cultural, and geographical backgrounds confirms the urgent need for a quantitative and qualitative implementation of CAT education programs worldwide [6,7]. These shall include multidimensional patient-centered interventions that actively and cooperatively engage oncology and thrombosis expert physicians and nurses, patient associations, scientific societies, and policymakers.
The clinical validity of patient-centered education incorporating effective communication strategies (e.g., brochures, videos, media) to enhance CAT awareness and recognition has been ascertained [4]. Not infrequently, becoming aware of the risks and potential consequences of CAT generates feelings of anxiety, helplessness, frustration, or depression that may aggravate cancer concerns, reinforcing the importance of offering proper phycological support to cancer patients/caregivers. Yet, achieving a deeper patient understanding of actionable strategies to reduce the risk of developing CAT, including lifestyle modifications and pharmacological interventions, should be a key educational aspect and might reduce the physical and emotional burden of CAT.
How to Contribute to The Initiative
People living with cancer, cancer survivors, and caregivers are warmly invited to complete the anonymous short survey available in 14 languages at https://redcap.isth.org/surveys/?s=APAPWWEWRA. Patient associations, scientific societies, and any individual or institution involved in cancer/thrombosis care are also welcome to promote the initiative through social networks, email newsletters, websites, and media.
The survey is accessible through REDCap software (Vanderbilt University, Nashville, TN, USA) hosted on ISTH servers and is exempt from ethics committee review [7]. Your precious contribution will help identify unmet gaps in CAT education and awareness and inform on the needs, barriers, and disparities across different healthcare systems, which might be used to tailor and prioritize patient-centered interventions to reduce the burden of CAT worldwide.
Conclusion
There is an increasing need to globally implement and integrate multi-disciplinary thrombo-oncology care pathways, encompassing effective CAT education and adequate psychological counseling, periodic assessment of CAT risk, and shared clinical decision-making algorithms for the prevention of CAT among people living with cancer.
References
- Mahajan A, Brunson A, Adesina A, Keegan THM, Wun T. The incidence of cancer-associated thrombosis is increasing over time. Blood Adv. 2022 Jan 11;6(1):307-320.
- Noble S, Prout H, Nelson A. Patients’ Experiences of LIving with CANcer-associated thrombosis: the PELICAN study. Patient Prefer Adherence. 2015;9:337-345.
- Hutchinson A, Rees S, Young A, Maraveyas A, Date K, Johnson MJ. Oral anticoagulation is preferable to injected, but only if it is safe and effective: An interview study of patient and carer experience of oral and injected anticoagulant therapy for cancer-associated thrombosis in the select-d trial. Palliat Med. 2019;33(5):510-517.
- Baddeley E, Torrens-Burton A, Newman A, et al. A mixed-methods study to evaluate a patient-designed tool to reduce harm from cancer-associated thrombosis: The EMPOWER study. Res Pract Thromb Haemost. 2021;5(5):e12545.
- Cancer-Associated Thrombosis Awareness Survey, European Cancer Patient Coalition, 2018. https://ecpc.org/tool-box/cancer-associated-thrombosis-cat/
- Falanga A, Girvalaki C, Monreal M, Easaw JC, Young A. How well do European patients understand cancer-associated thrombosis? A patient survey. Cancer Treat Res Commun. 2022;31:100557.
- Potere N, Barco S, Mahé I, Cesarman-Maus G, Angchaisuksiri P, Leader A, et al. Awareness of venous thromboembolism among patients with cancer: Preliminary findings from a global initiative for World Thrombosis Day. J Thromb Haemost. 2022 Dec;20(12):2964-2971. doi: 10.1111/jth.15902.