Although patients with cancer have a four-to-five-fold increased risk of venous thromboembolism (VTE) compared with the general population, most of them are unaware of this risk and the sign and symptoms of VTE.
The lack of awareness of cancer-associated thrombosis among patients with cancer
The PELICAN study showed that patients with cancer are well informed about the signs, symptoms, and risks of febrile neutropenia and when to seek medical attention. However, they have limited knowledge about cancer-associated thrombosis (CAT) and are unaware of the signs and symptoms to look out for .
The lack of information about CAT results in a delayed presentation to the hospital and diagnosis because the patients attribute VTE symptoms to the cancer treatment or cancer itself .
A qualitative sub-study of the SELEC-D trial (ISRCTN: 86712308) confirms that most patients with cancer are unaware of their increased risk and symptoms of CAT, resulting in misattribution of symptoms and a delay in seeking help .
The EMPOWER study evaluated the impact of a video patient information video (“Blood clots, cancer and you: what you need to know“) on patient care and healthcare resource usage .
The study not only confirmed that patients are unaware of the risk of CAT and do not know what to do if they experience symptoms, but it also showed that nurses and some medical staff share the same lack of knowledge .
Implementing information about CAT could help reduce the time taken for patients to seek medical attention on the development of CAT symptoms and could protect their lives.
We previously shared patients’ points of view about knowledge of CAT and its education. We wrote about the importance of informing cancer patients about the risks, signs, and symptoms of thrombosis.
The European Cancer Patient Coalition’s survey
In 2018, the European Cancer Patient Coalition (ECPC) conducted a patient survey, which confirmed the lack of CAT awareness among cancer patients in Europe .
ECPC is the largest European cancer patient community, involving over 400 non-profit organizations within the European Union. ECPC mission is to provide key information and guidance on the latest developments and resources in cancer care for patients .
Given that CAT is preventable and treatable, provided it is recognized and diagnosed in time, ECPC decided to conduct a patient survey to understand the level of CAT awareness among cancer patients in Europe. .
The survey involved 1,365 cancer patients or survivors or caregivers from six countries (UK, Spain, Germany, Italy, Greece, and France) .
The results showed that 72% of respondents were unaware that people with cancer have a higher-than-normal risk of developing thrombosis. Alarmingly, 26% of those who knew about an increased risk of thrombosis became aware of it after suffering from a blood clot .
Only 12% of people received information about CAT verbally from their hospital doctor, while 5% received it from their general practitioner. Worryingly enough, 10% of the respondents said they found out about CAT from their online research .
Regarding patient awareness about CAT symptoms, some are relatively well known (swelling in the foot, ankle, or leg and unexplained shortness of breath), while others are more a mystery. For example, only 33% recognized irregular heartbeat as a sign of pulmonary embolism. On the other hand, about half of the responders were aware that pain, cramping, or tenderness in the calf, could be signs of deep vein thrombosis .
All these data indicate a desperate need for more information about CAT risk, signs, and symptoms for cancer patients. However, they also show the urgency for healthcare professionals to improve their communication about CAT at every step of the patient’s journey: at the time of the cancer diagnosis, when treatment commences, and during follow-up consultations.
Tips on patient CAT education
A recent article outlines the information to be provided and how to discuss CAT with oncology patients and caregivers along the cancer care continuum .
Organizing listening and teaching moments in clinics and hospitals are essential for an effective patient information strategy. In addition, it is of utmost importance that healthcare providers share information about trustable websites to enable self-learning .
If patients receive insufficient information about blood clots, they are highly likely to browse the internet, looking for answers when experiencing the first symptoms. Unfortunately, this most probably results in reading misleading and frightening information.
Multidisciplinary team members (including community pharmacists) should provide CAT risk education. It should include lesser-known but equally important risk factors like cancer surgery, use of central lines, cancer type, chemotherapeutics, and radiotherapy .
Specific information about easy-to-implement prevention strategies should be part of the CAT awareness program. Patients should be aware that the risk of VTE can be reduced with easy and inexpensive but constant actions, such as walking, if possible, simple exercises while lying in bed, and keeping hydrated .
Finally, patients should be informed about CAT symptoms and whom to contact if they experience them .
Together with the most common CAT symptoms (such as warmth, pain, swelling, tenderness, or redness in any extremity, particularly the calf or leg), patients should be informed to pay attention to chest discomfort, shortness of breath coughing blood, light-headedness/dizziness, and irregular heartbeat as a possible hint of pulmonary embolism .
To increase patient awareness about CAT, healthcare professionals must be highly educated and talk about the signs and symptoms of thrombosis. They need to inform and educate the patients at each step of the patient journey. Frequent repetition and multimedia approaches are crucial to success.
- 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. doi:10.1016/j.ctarc.2022.100557.