Although thrombosis is the second cause of death in patients with cancer, after cancer itself, most of these patients are unaware of the risks and the signs and symptoms of venous thromboembolism (VTE).
The PELICAN study showed that patients with cancer have limited knowledge about cancer-associated thrombosis (CAT) and are unaware of the signs and symptoms to look out for .
This lack of information is responsible for the delayed presentation to the hospital and diagnosis because the patients attribute VTE symptoms to the cancer treatment or cancer itself .
These results were confirmed by a qualitative sub-study of the SELEC-D trial (ISRCTN: 86712308) and the European Cancer Patient Coalition’s survey .
Even more concerning, the EMPOWER study showed that nurses and some medical staff share the same lack of knowledge about the risk of thrombosis in cancer patients .
It is known that different cancers have different thrombotic risks. Cancer-modifying treatments (surgery or systemic anticancer therapies) further increase the risk of CAT and are one of the reasons why CAT events are higher within the first 3 months of cancer diagnosis .
CAT has important psychological implications because cancer patients receive two life-threatening diagnoses (cancer and VTE), one right after the other.
Although, a recent study showed that the clinical presentation of CAT (symptomatic versus asymptomatic) could impact illness perception in these patients .
Illness perceptions are defined as personal, cognitive representations of a disease caused by the symptoms, consequences, time course, controllability, and causes of the illness.
Illness perception contributes to health-related quality of life (HRQoL) in patients with cancer . Perceiving less severe consequences has been associated with better HRQoL, while negative emotional representations have been associated with poorer HRQoL [7,8]. In addition, patients who perceive their cancer as emotionally difficult perceive it as more chronic .
Symptoms play a significant role in illness perception in cancer patients and in how patients monitor their illness and follow up on their medications. Not only the absence of symptoms can improve patients’ perception of their disease, but it also reduces treatment adherence .
VTE can present asymptomatically or symptomatically. Pain, swelling, erythema in the limbs, dyspnea, chest pain, and hemoptysis are some of the most common symptoms of VTE .
Asymptomatic VTE is generally accidentally diagnosed during computed tomography scans performed for other reasons.
A recent study involving 11 cancer patients (six with asymptomatic CAT and five with symptomatic CAT) showed that the clinical presentation of CAT could profoundly modify illness perception .
The study results
All patients considered CAT a secondary disease compared to cancer, but symptomatic patients saw CAT as a sign of the progression of their disease. CAT did not play any role in cancer disease perception for asymptomatic patients.
This dichotomy was further evident when patients were asked to identify the causes of CAT or the possibility of recurrence. Symptomatic patients could explain the probable causes of CAT and anxiously feared recurrent events. Asymptomatic patients instead did not care to investigate the etiology of the disease and never felt afraid or anxious about recurrent events, confirming the feeling that CAT was irrelevant to their prognosis.
This is worth special consideration when educating cancer patients about CAT because asymptomatic patients do not acknowledge the dangers of CAT or recurrent events, not seeing them as a threat to their health.
In addition, it is essential to give the necessary information to patients before and after the thrombotic event to ensure prompt symptom recognition (hence seeking medical attention) and increase the sense of control over the disease.
Finally, CAT symptoms seem to also play a role in treatment acceptance. Even though all patients felt that anticoagulant treatment was intrusive, symptomatic patients accepted it more than asymptomatic because they could experience the treatment’s beneficial effects, feeling a reduction in symptoms. On the other hand, asymptomatic participants hardly accepted injections, feeling them as an extra unnecessary burden.
VTE symptoms affect the way cancer patients perceive their disease and CAT. This should be taken into account when educating or counseling cancer patients.
In asymptomatic CAT patients, special attention should be put on education about recurrence, risk factors, and compliance with treatment. In symptomatic CAT patients, the diagnosis of VTE is an extra mental burden, and special psychological support to assist coping strategies might be needed.
- 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.
- 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
- Nouhravesh N, Sindet-Pedersen C, Kümler T, Schou M, Lamberts MK, Højen AA. “No one told me anything about it and I cannot explain it”: Illness perception in symptomatic and asymptomatic patients with cancer-associated thrombosis. Thromb Res. 2022;220:125-130. doi:10.1016/j.thromres.2022.10.013
- Ashley L, Marti J, Jones H, Velikova G, Wright P. Illness perceptions within 6 months of cancer diagnosis are an independent prospective predictor of health-related quality of life 15 months post-diagnosis. Psychooncology. 2015;24(11):1463-1470. doi:10.1002/pon.3812
- Jørgensen IL, Frederiksen K, Boesen E, Elsass P, Johansen C. An exploratory study of associations between illness perceptions and adjustment and changes after psychosocial rehabilitation in survivors of breast cancer. Acta Oncol. 2009;48(8):1119-1127. doi:10.3109/02841860903033922
- Scharloo M, Baatenburg de Jong RJ, Langeveld TP, van Velzen-Verkaik E, Doorn-op den Akker MM, Kaptein AA. Quality of life and illness perceptions in patients with recently diagnosed head and neck cancer. Head Neck. 2005;27(10):857-863. doi:10.1002/hed.20251
- Hopman P, Rijken M. Illness perceptions of cancer patients: relationships with illness characteristics and coping. Psychooncology. 2015;24(1):11-18. doi:10.1002/pon.3591
- Khorana AA, Mackman N, Falanga A, et al. Cancer-associated venous thromboembolism. Nat Rev Dis Primers. 2022;8(1):11. doi:10.1038/s41572-022-00336-y.