During the ICTHIC webinar “Joint forces: the Patient & the Multi-disciplinary Team working together to improve outcomes in CAT,” Prof Annie Young gave a lecture on the importance of sharing information about cancer-associated thrombosis (CAT) to patients with cancer.
Here, we summarize the key messages of her speech. You can watch Annie Young’s speech in the video below; you can also watch the full webinar recording here.
Patients with cancer are going through a particularly uncertain period. Together with the uncertainty about their future, they must deal with uncertainty resulting from the COVID-19 pandemic, the risk of infection, and difficulties in everyday treatments and checkups.
The ‘Time to Act’ Data Navigator, a new tool created by Queen’s University Belfast in the UK and the European Cancer Organization, has uncovered the capacity of the pandemic to disrupt cancer treatment.
Due to the COVID-19 pandemic in Europe:
- An estimated 1 million cancer cases could be undiagnosed
- An estimated 100 million cancer screening tests were not performed, leading to later stage diagnoses and decreased overall survival
- Up to one in two people with potential cancer symptoms were not urgently referred for diagnosis
- One in every five cancer patients is currently still not receiving the surgical or chemotherapy treatment they need .
In addition, COVID-19 and cancer are both risk factors for VTE. For this reason, in this pandemic period, it is even more important to raise awareness about the risks of VTE in patients with cancer.
A qualitative sub-study of the SELEC-D trial (Anticoagulation Therapy in SELECTeD Cancer Patients at Risk of Recurrence of Venous Thromboembolism [ISRCTN: 86712308]), using semi-structured interviews, showed that most patients were unaware of their increased risk and symptoms of CAT, resulting in misattribution of symptoms and a delay in seeking help. In addition, some patients were shocked or worried by their CAT diagnosis .
Patients interviewed in the study declared:
“My leg had been in pain for a good week or so, but you just think it’s part of cancer” .
“I was in blissful ignorance; I was thinking that maybe it’s part and parcel of this cancer, maybe it’s the lymph nodes causing the breathlessness” .
“I was utterly astounded, quite honestly. I thought, Wow, my God, it could have killed me” .
WHO global strategy on people-centered and integrated health services
To provide people with well-planned, integrated health services required to best respond to patient’s health, the World Health Organization (WHO) published the “WHO global strategy on people-centered and integrated health services,” accompanied by the document “People-centered and integrated health services: an overview of the evidence” .
The report presents a common set of principles and five strategies to enhance efforts to better coordinate care around people’s needs. The strategy is based on experience gained in different countries over the last few years and on wide-ranging consultation with global, regional, and national experts .
Integrated health services are managed and delivered to ensure that people receive a continuum of health promotion, disease prevention, diagnosis, treatment, disease management, rehabilitation, and palliative care services at the different levels and sites of care within the health system (and according to their needs throughout their life course) . To achieve this, the role of the multidisciplinary team is of utmost importance.
When dealing with CAT, obvious multidisciplinary team members are oncologists, hematologists, general practitioners, surgeons, radiologists, chemotherapists, palliative care personnel, psychologists, nurses, patients and caregivers.
However, these figures are not enough. Patient associations, social services, public health, policymakers, hospital leaders, the press, and media need to spread knowledge and information.
The European Cancer Patient Coalition’s survey
In 2018, the European Cancer Patient Coalition conducted a patient survey, which confirmed the very low CAT awareness among cancer patients in Europe .
The results showed that the vast majority (72%) of respondents were unaware that people with cancer have a higher-than-normal risk of developing thrombosis. In addition, among those aware of the increased risk of thrombosis, 26% became aware when suffering from a blood clot themselves .
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 .
While some of the CAT symptoms are relatively well known (swelling in the foot, ankle, or leg and unexplained shortness of breath), other symptoms are much less well known. For example, only 57% of respondents said they knew that pain, cramping, or tenderness in the calf, could be signs of deep vein thrombosis. In addition, just 33% recognized irregular heartbeat as a sign of pulmonary embolism .
These results indicate that clinicians and patient organizations should promote information about CAT to ensure that CAT risks, signs and symptoms are better known. In addition, health professionals should provide more information for patients at every step of the patient’s journey, at the time of the cancer diagnosis, when treatment commences and during follow-up consultations .
Health professionals should share more information about some of the lesser-known risk factors, including cancer surgery, advanced stage cancers, the use of a central line, chemotherapy, and radiotherapy .
In addition, particular attention should be given to raise awareness about some of the lesser-known symptoms of deep vein thrombosis (like a warm or heavy sensation in the leg and pain, cramping or tenderness in the calf) and pulmonary embolism (like coughing up blood, light-headedness/dizziness, and an irregular heartbeat) .
Finally, health professionals should provide cancer patients written information about CAT and information about credible resources online that patients can use. Since patients with cancer often prefer to seek information online, healthcare providers and patient organizations need to do more to ensure that such information is available, clear, and consistent .
Watch Annie Young’s speech
- Time To Act: European Cancer Organisation Calls for Urgent Action as One Million Cancer Cases are Undiagnosed in Europe Due to Covid-19, European Cancer Organization 2021. europeancancer.org/resources/201:time-to-act.html
- 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.
- Global strategy on people-centered and integrated health services, interim report, World Health Organization (WHO), 2015. https://apps.who.int/iris/bitstream/handle/10665/155002/WHO_HIS_SDS_2015.6_eng.pdf
- Cancer-Associated Thrombosis Awareness Survey, European Cancer Patient Coalition, 2018. https://ecpc.org/tool-box/cancer-associated-thrombosis-cat/