Ann Marie O’Neill is the Patient Founder and acting CEO at Thrombosis Ireland. After surviving several blood clot events, she realized how little information is given to the general population about the risk of thrombosis. She then set up THROMBOSIS IRELAND to raise awareness about this potentially preventable life-threatening condition.
During the ICTHIC webinar “Joint forces: the Patient & the Multi-disciplinary Team working together to improve outcomes in CAT,” she talked about the importance of informing and educating cancer patients about the risks, signs, and symptoms of thrombosis.
Here, we summarize the key messages of her speech. You can watch Ann Marie’s speech in the video below, and you can watch the full webinar recording here.
One in five cancer patients develops venous thromboembolism (VTE), with the majority experiencing it in the first 3 months.
Most cancer patients are unaware of the risks, signs, and symptoms of thrombosis. Most importantly, they don’t know what to do if they experience them.
The European Cancer Patient Coalition summarized the Cancer-Associated Thrombosis Awareness Survey results, which measured patient awareness of cancer-associated thrombosis (CAT) throughout Europe .
72% of respondents were unaware that people with cancer have a higher risk of developing thrombosis compared to the general population. Among the 28% aware of the increased risk of thrombosis for cancer patients, the level of understanding was nevertheless low .
26% of the patients who were previously aware of the increased risk of thrombosis for cancer became aware of this risk only after suffering from a blood clot .
These are very alarming data because they indicate poor communication about VTE risk from healthcare professionals to cancer patients.
Oncologists also seem to underestimate the guidelines and risk scores. . Moreover, several reports have revealed treatment patterns for CAT that are not consistent with contemporary guideline recommendations, including both underuse and inappropriate choice of anticoagulant agents [3,4].
A survey published in 2020 among oncologists assessed current practice patterns surrounding VTE in the USA. The results showed that almost 70% of oncologist specialists do not know about the Khorana risk score (the first risk score validated in 2008) [2,5].
In 2017, the charity Anticoagulation UK (formerly Anticoagulation Europe) developed a patient information video called “Blood clots, cancer and you: what you need to know.” The EMPOWER study evaluated the impact of the video on patient care and healthcare resource usage .
The study results confirmed that both nurses and patients are unaware of the risk of CAT, and patients don’t know what to do if they experience symptoms .
Cancer patients, nurses, doctors, caregivers need to be informed and educated about thrombosis to protect each patient in their recovery journey.
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.
Georgia Murphy’s story
Georgia Murphy was diagnosed with cancer and received two different kinds of chemotherapy. The first-line treatment was through intravenous injections. Chemotherapy increases the risk of blood clots, but she didn’t receive any information about the risks of VTE.
When she moved on to intravenous chemotherapy treatment through a peripherally inserted central catheter (PICC) line, she was told about a potential risk of developing blood clots (because of the PICC line) and to look out for swelling.
The week after, while attending her chemotherapy treatment, a nurse noticed that her arm was a bit swollen, but no actions were taken since Georgia wasn’t alarmed.
Georgia kept the PICC line for 6 weeks. 1 month after she removed it, she noticed some swelling in her arm. The veins in her chest, shoulder, and neck were bold, so she became concerned. In agreement with her oncologist, she had an ultrasound that excluded blood clots and suggested lymphoedema. Reaching back to her oncologist, Georgia was sent for a visit with a lymphatic nurse, who advised the vascular nature of the swelling.
Again, Georgia had to go back to her oncologist, who eventually prescribed a venogram that highlighted a vein occlusion. A few days later, she received a diagnosis of thrombosis probably caused by the PICC line, and she was prescribed an oral anticoagulant.
In her journey, Georgia felt the people around her didn’t know what they were dealing with or how to advise her. Georgia believes that a deep understanding of the importance of fast detection and treatment of VTE is required to ensure no long-lasting damage.
Georgia was left to seek answers alone, to recover alone. She felt left alone after her cancer treatment finished. Yet she was not finished recovering from her ordeal; she needed support.
Information and education about the risk of CAT, its signs and symptoms, and the need to get immediate medical attention must be provided to newly diagnosed cancer patients and their caregivers. In addition, health care professionals must consistently check and ask patients about the signs and symptoms of thrombosis throughout the treatment.
Susan was approaching her last chemotherapy treatment, and while shopping, she started to struggle to walk, feeling pain in her calf. No alarm bells were raised because she had no idea of the signs and symptoms of blood clots or that she was potentially at potential risk due to her cancer or cancer treatment.
1 week later, she returned to the hospital for her final treatment and mentioned her swollen and sore leg. A deep vein thrombosis was quickly diagnosed, and Susan was told not to worry that medication would have dealt with it. Unfortunately, the clot moved into her lungs and, a few hours later, Susan died of pulmonary embolism.
What patients say
“I would have liked to have been informed properly of my risk so I could protect myself.”
“It is important to repeat the information every time I have contact with my health care professional. Ask me if I have blood clot symptoms routinely every time you see me.”
“Don’t be afraid to scare us with this information; we are scared anyway, and if you don’t tell us how dangerous it is, we will not prioritize it.”
“Getting a clot was the worst part of my treatment.”
“It was so unexpected, and that made it frightening.”
“The urgency with which it had to be treated was terrifying.”
“If I had known the leg pain was so serious, I would have acted sooner.”
“My cancer is gone, but I am left with a disability and lifelong pain and discomfort because of the blood clot.”
Healthcare professionals need to be highly educated and extremely vigilant for the signs and symptoms of thrombosis. In addition, they need to inform and educate the patients about the risks and the signs and symptoms of blood clots to protect themselves. Frequent repetition and multimedia approaches are crucial to success.
Patients and health care professionals need to be in no doubt about the importance of acting fast if symptoms emerge. Early diagnosis and treatment ensure the best outcome.
Watch Ann Marie’s speech
- Martin KA, Molsberry R, Khan SS, Linder JA, Cameron KA, Benson A 3rd. Preventing venous thromboembolism in oncology practice: Use of risk assessment and anticoagulation prophylaxis. Res Pract Thromb Haemost. 2020;4(7):1211-1215
- Mahé I, Puget H, Buzzi JC, et al. Adherence to treatment guidelines for cancer-associated thrombosis: a French hospital-based cohort study. Support Care Cancer. 2016;24(8):3369-3377.
- Matzdorff A, Ledig B, Stuecker M, Riess H. Practice Patterns for Prophylaxis and Treatment of Venous Thromboembolism in German Cancer Patients. Oncol Res Treat. 2016;39(4):194-201.
- Khorana AA, Kuderer NM, Culakova E, Lyman GH, Francis CW. Development and validation of a predictive model for chemotherapy-associated thrombosis. Blood. 2008;111(10):4902-4907
- 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.