During the ICTHIC webinar “Joint forces: the Patient & the Multi-disciplinary Team working together to improve outcomes in CAT,” Prof Noble talked about the EMPOWER study, which evaluated the efficacy of a patient-designed information video on raising patients’ and healthcare providers’ awareness about cancer-associated thrombosis (CAT).
Here, we summarize the key messages of his speech. You can watch Simon Noble’s speech in the video below, and you can watch the full webinar recording here.
It is known that different cancers have different thrombotic risks, with an increased venous thromboembolism (VTE) risk in patients with locally advanced and distant metastatic disease.
In addition, most patients are diagnosed with CAT within the first 3 months of their cancer diagnosis, which has important psychological implications; they receive two life-threatening diagnoses (cancer and CAT), one right after the other.
Cancer-modifying treatments (surgery or systemic anticancer therapies) are one of the reasons why CAT events are higher within the first 3 months of cancer diagnosis, as they further increase the risk of CAT .
Several clinical trials and guidelines suggest primary prophylaxis for certain patient groups, but for most patients with cancer, primary prophylaxis is not amenable or supported by enough evidence .
Considering this, it is of utmost importance to educate and warn patients with cancer about the risks of VTE so that they can be vigilant and search for help as soon as needed.
“One thing that people underestimate is how big a problem CAT is. In my experience, when I first meet a patient with cancer, they know everything about overall neutropenia and how to recognize it or what to do about it. Still, very few know about CAT,” Simon Noble said.
Yet, the mortality from thrombosis is the second highest cause of death during chemotherapy, second only to disease progression [3. 4]. Therefore, it really should be a prioritized area.
The PELICAN study
The PELICAN study qualitatively explored patients’ experience of living with CAT. The study aimed at i) exploring the CAT journey through the lived patient experience; ii) the meaning of CAT to patients within the context of the cancer journey; iii) the impact of the treatment for CAT; iv) the emotional impact of CAT; v) and unmet areas of need within the CAT journey.
The study results showed that while patients were well informed about the signs, symptoms, and risks of febrile neutropenia and when to seek medical attention, they had limited knowledge about CAT and were unaware of the signs and symptoms look out for. CAT symptoms were generally attributed to chemotherapy or underlying cancer, resulting in delayed presentation to hospital and diagnosis. In addition, patients felt they were not informed
It would often be an emergency when patients were diagnosed with CAT because the symptoms have dramatically worsened .
“I think patients expect to feel unwell during chemotherapy, and if they’re not being told that breathlessness or pain or swelling in their leg is a sign of something serious, they will just accept that it’s nothing to worry about,” commented Prof Noble.
In addition, if patients receive insufficient information about clots, a high risk exists that, when experiencing the first symptoms, they browse the internet looking for answers. This most probably results in reading misleading and frightening information.
The PELICAN study was performed in different countries (like Spain, Canada, France). Comparing these studies across the countries, one area presented uniform results: all the countries described a lack of information regarding blood clots and CAT [6-8].
The EMPOWER study
Trying to improve information about thrombosis available to patients with cancer the charity Anticoagulation UK developed in 2017 a patient information video called “Blood clots, cancer and you: what you need to know.” The video covers all the practical information a patient needs to know about CAT.
The EMPOWER study evaluated the impact of the video on patient care and healthcare resource usage .
The study explored if patients accepted the video and if it was a useful tool to improve their CAT awareness. It also aimed to determine if the video might impact healthcare providers, who decide the information given to the patients. Finally, it sought to test if the video helped reduce patients’ time to seek medical attention after the first symptoms .
It was a mixed-method study with three components analyzed before and after embedding the video for 3 months into the center’s clinical practice:
- Auditing how long did patients have symptoms before they presented to the center
- Keeping track of the number of radiology requests to investigate symptomatic VTE (to check if the video increased false and unnecessary scans due to excessive alarm among patients)
- Collection of questionnaires from patients and medical staff to verify if the video improved their knowledge and attitudes towards CAT .
Prior to the introduction of the video, it took just under 9 days on average for a patient to present with symptoms of VTE, which is a worrying amount of time in the presence of a potential growing and propagating clot .
The sooner a patient receives anticoagulation therapy, the sooner the blood clot starts resolving, reducing the likelihood of significant morbidity, mortality, and developing post-thrombotic syndrome in the future .
The video reduced the time to seek medical attention by two-thirds. After implementing the video into clinical practice, the time it took for a patient to present to the clinic from the development of symptoms was 3 days .
No statistically significant differences were highlighted regarding the amount of scan test requests. Before introducing the video, 36% of requested scans were positive to VTE compared to 32% after the video implementation. This means the video didn’t add an unnecessary burden on radiology resources because the percentage of positive scans performed was similar, but they were requested sooner .
Lastly, the study highlighted a considerable knowledge gap around CAT and the need for education for nurses. Before introducing the video, nurses prioritized sepsis when giving information to patients because they didn’t know the risks of blood clots in cancer patients and the importance of VTE early diagnosis and treatment .
Interestingly, embedding the video into practice improved nurses’ self-reported knowledge of CAT and led to changes in their practice. It also created a desire for ongoing education on the topic .
If you want to read more about the EMPOWER study, check out “Tools to raise thrombosis awareness in patients with cancer: the EMPOWER study.”
Currently, the provision of patient information about the risks, signs, and symptoms of CAT is inadequate. Patients and clinical staff’s poor knowledge about CAT lead to delayed presentation, diagnosis, and treatment of VTE.
The implementation of a video in clinical practice helped improve CAT awareness among patients and healthcare providers.
Watch Simon Noble’s speech
1. Blom JW, Doggen CJ, Osanto S, Rosendaal FR. Malignancies, prothrombotic mutations, and the risk of venous thrombosis. JAMA. 2005;293(6):715-722. doi:10.1001/jama.293.6.715
2. Streiff MB, Abutalib SA, Farge D, Murphy M, Connors JM, Piazza G. Update on Guidelines for the Management of Cancer-Associated Thrombosis. Oncologist. 2021;26(1):e24-e40.
3. Khorana AA. Venous thromboembolism and prognosis in cancer. Thromb Res. 2010;125(6):490-493.
4. Khorana AA, Francis CW, Culakova E, Kuderer NM, Lyman GH. Thromboembolism is a leading cause of death in cancer patients receiving outpatient chemotherapy. J Thromb Haemost. 2007;5(3):632-634.
5. Noble S, Prout H, Nelson A. Patients’ Experiences of LIving with CANcer-associated thrombosis: the PELICAN study. Patient Prefer Adherence. 2015;9:337-345.
6. Noble S, Nelson A, Scott J, et al. Patient Experience of Living With Cancer-Associated Thrombosis in Canada (PELICANADA). Res Pract Thromb Haemost. 2019;4(1):154-160. Published 2019 Oct 21.
7. Font C, Nelson A, Garcia-Fernandez T, Prout H, Gee P, Noble S. Patients’ Experience of Living with Cancer-associated thrombosis in Spain (PELICANOS). Support Care Cancer. 2018;26(9):3233-3239.
8. Mahé I, Chidiac J, Pinson M, et al. Patients experience of living with cancer associated thrombosis in France (Le PELICAN). Thromb Res. 2020;194:66-71.
9. 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.