The Experience of Patients With Cancer Who Develop Venous Thromboembolism: An Exploratory Study

Mockler, Alison; O'Brien, Brigit; Emed, Jessica; Ciccotosto, Gina

doi:10.1188/12.onf.e233-e240

Cited by 16 publications

(70 citation statements)

References 33 publications

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“…Whilst PELICAN, similarly, identified limited patient knowledge about the risk of VTE, it also suggested this lack of awareness may delay the diagnosis and subsequent treatment of CAT. It is commonplace for chemotherapy patients to be advised of the signs and symptoms of neutropenic sepsis and to be given clear instructions of what to do in such an event 20. Since CAT is the most common cause of chemotherapy-related mortality, it would seem appropriate to afford similar emphasis on CAT awareness as is seen with neutropenic sepsis 5.…”

Section: Discussionmentioning

confidence: 99%

Patients’ Experiences of LIving with CANcer-associated thrombosis: the PELICAN study

Noble¹,

Prout²,

Nelson³

2015

PPA

104

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IntroductionThrombosis remains the most common preventable cause of mortality in cancer patients receiving chemotherapy. Whilst the prophylaxis and treatment of this condition is well understood, the patient experience and subsequent behavioral factors are not.MethodsPatients receiving treatment for cancer-associated thrombosis (CAT) were interviewed about their experiences of CAT within the context of their cancer journey. Twenty interviews were transcribed and analyzed using framework analysis.ResultsChemotherapy patients were well informed about the risks of febrile neutropenia, how to recognize it, and when to seek medical attention. However, they had limited knowledge about CAT and received no information about the condition. Red flag symptoms suggestive of CAT were attributed to chemotherapy or the underlying cancer, resulting in delayed presentation to hospital, and diagnosis. The CAT journey was considered a distressing one, with limited support or information, in complete juxtaposition with the treatment they received for their cancer. Patients felt there was little ownership for the management of CAT, which further added to their distress.ConclusionCAT is a common occurrence and patients view their experiences of it within the context of their overall cancer journey. However, patients receive little information to help recognize CAT and access timely treatment on the development of symptoms. Whilst other cancer complications have clear treatment pathways, thrombosis does not appear to have been afforded the same priority. A proactive approach to increase patient awareness, coupled with established CAT pathways is likely to reduce mortality, morbidity, and long-term psychological distress.

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Section: Discussionmentioning

confidence: 99%

Patients’ Experiences of LIving with CANcer-associated thrombosis: the PELICAN study

Noble¹,

Prout²,

Nelson³

2015

PPA

104

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“…Increased mortality [9] • Morbidity caused by symptoms of pulmonary embolism or deep-vein thrombosis [10,11] • Reduced quality of life [12] • Interruption of cancer treatment [13,14] • Financial consequences [15,16] Long Term Consequences…”

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confidence: 99%

Primary Thromboprophylaxis in Ambulatory Cancer Patients: Where Do We Stand?

Mulder

Bosch

2020

Cancers

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Venous thromboembolism (VTE), comprising deep-vein thrombosis and pulmonary embolism, is a frequent complication in ambulatory cancer patients. Despite the high risk, routine thromboprophylaxis is not recommended because of the high number needed to treat and the risk of bleeding. Two recent trials demonstrated that the number needed to treat can be reduced by selecting cancer patients at high risk for VTE with prediction scores, leading the latest guidelines to suggest such an approach in clinical practice. Yet, the interpretation of these trial results and the translation of the guideline recommendations to clinical practice may be less straightforward. In this clinically-oriented review, some of the controversies are addressed by focusing on the burden of VTE in cancer patients, discussing the performance of available risk assessment scores, and summarizing the findings of recent trials. This overview can help oncologists, hematologists, and vascular medicine specialists decide about thromboprophylaxis in ambulatory cancer patients.

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“…26 Furthermore, a Canadian study identified that patients with CAT experienced frightening symptoms, which they recognised as potentially life-threatening and requiring urgent treatment. 27 Patients perceived CAT as an additional burden to their cancer and associated treatments, and while some felt the VTE was insignificant compared with their cancer diagnosis, others viewed it as a setback in their cancer journeys. 27 Treatment of VTE involves 5 days' anticoagulation therapy with LMWH and subsequently 3-6 months' warfarin.…”

Section: Background and Rationalementioning

confidence: 99%

“…27 Patients perceived CAT as an additional burden to their cancer and associated treatments, and while some felt the VTE was insignificant compared with their cancer diagnosis, others viewed it as a setback in their cancer journeys. 27 Treatment of VTE involves 5 days' anticoagulation therapy with LMWH and subsequently 3-6 months' warfarin. 2,3 However, patients with cancer experience higher rates of further thrombotic and haemorrhagic events.…”

Section: Background and Rationalementioning

confidence: 99%

“…4,9,10,28 Although patients have discussed the discomfort of injecting LMWH, they also report this an acceptable trade-off to prevent a further thrombotic event. 26,27 Interestingly, patients have reported preference of LMWH over warfarin because of the regular blood tests required to manage the latter therapy. 8,24 Management of CAT beyond 6 months is more challenging.…”

Section: Background and Rationalementioning

confidence: 99%

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A feasibility study to inform the design of a randomised controlled trial to identify the most clinically effective and cost-effective length of Anticoagulation with Low-molecular-weight heparin In the treatment of Cancer-Associated Thrombosis (ALICAT)

Noble

Nelson

Fitzmaurice

et al. 2015

Health Technol Assess

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BackgroundVenous thromboembolism is common in cancer patients and requires anticoagulation with low-molecular-weight heparin (LMWH). Current data recommend LMWH for anticoagulation as far as 6 months, yet guidelines recommend LMWH beyond 6 months in patients who have ongoing or active cancer. This recommendation, based on expert consensus, has not been evaluated in a clinical study.Objectives(1) To identify the most clinically and cost-effective length of anticoagulation with LMWH in the treatment of cancer-associated thrombosis (CAT); (2) to identify practicalities of conducting a full randomised controlled trial (RCT) with regard to recruitment, retention and outcome measurement; and (3) to explore the barriers for progressing to a full RCT.DesignThe Anticoagulation with Low-molecular-weight heparin In the treatment of Cancer-Associated Thrombosis (ALICAT) trial is a randomised, multicentre, feasibility mixed-methods study with three components: (1) a RCT comparing ongoing LMWH treatment for CAT with cessation of LMWH at 6 months’ treatment (current licensed practice) in patients with locally advanced or metastatic cancer, consulted in three clinical settings (haematology outpatients, oncology outpatients and primary care); (2) a nested qualitative study, including focus groups with clinicians to investigate attitudes for recruiting to the study and identify the challenges of progressing to a full RCT, and semistructured interviews with patients and relatives to explore their attitudes towards participating in the study, and potential barriers and concerns to participation; and (3) a UK-wide survey exercise to develop a classification and enumeration system for the CAT models and pathways of care.SettingA haematology outpatients department, an oncology outpatients department and primary care.ParticipantsPatients with ongoing active or metastatic cancer who have received 6 months of LMWH for CAT.InterventionsOngoing LMWH treatment for CAT versus cessation of LMWH at 6 months’ treatment in patients with locally advanced or metastatic cancer.Main outcome measures(i) The number of eligible patients over 12 months; (ii) the number of recruited patients over 12 months (target recruitment rate of 30% of eligible patients); and (iii) the proportion of randomised participants with recurrent venous thromboembolisms (VTEs) during follow-up.ResultsFollowing several delays in setting up the RCT component of the study, 5 out of 32 eligible patients consented to be randomised to the RCT suggesting progression to a full RCT was not feasible. Reasons for non-consenting were primarily based on a fixed preference for continuing or discontinuing treatment after 6 months of anticoagulation, and a fear of randomisation to their non-preferred option. Views were largely influenced by patients’ initial experience of CAT. Focus groups with clinicians revealed that they would be reticent to recruit to such a study as they had fixed views of best management despite the lack of evidence. Patient pathway modelling suggested that there is a broad heterogeneity of practice with respect to CAT management and co-ordination, with no consensus on which specialty should best manage such cases.ConclusionsThe results of the RCT reflect recruitment from the oncology site only and provide no recruitment data from haematology centres. However, it is unlikely that these other sites would have access to more eligible patients. The management of cancer-associated thrombosis beyond 6 months will remain a clinical challenge. As it is unlikely that a prospective study will successfully recruit, other strategies to accrue relevant data are necessary. Currently the LONGHEVA (Long-term treatment for cancer patients with deep-venous thrombosis or pulmonary embolism) registry is in development to prospectively evaluate this important and common clinical scenario.Study registrationThis study is registered as clinical trials.gov number NCT01817257 and International Standard Randomised Controlled Trial Number (ISRCTN) 37913976.Funding detailsFunding for the ALICAT trial was provided by the Health Technology Assessment programme (10/145/01) in response to a themed funding call. The study was designed in accordance with the initial funding brief and feedback from the review process.

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The Experience of Patients With Cancer Who Develop Venous Thromboembolism: An Exploratory Study

Abstract: Study findings suggest that patient education about VTE would be useful for the initial reaction and subsequent coping phases of VTE, thus representing an important target area for nursing intervention.

Cited by 16 publications

References 33 publications

Patients’ Experiences of LIving with CANcer-associated thrombosis: the PELICAN study

Patients’ Experiences of LIving with CANcer-associated thrombosis: the PELICAN study

Primary Thromboprophylaxis in Ambulatory Cancer Patients: Where Do We Stand?

A feasibility study to inform the design of a randomised controlled trial to identify the most clinically effective and cost-effective length of Anticoagulation with Low-molecular-weight heparin In the treatment of Cancer-Associated Thrombosis (ALICAT)

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The Experience of Patients With Cancer Who Develop Venous Thromboembolism: An Exploratory Study

Abstract: Study findings suggest that patient education about VTE would be useful for the initial reaction and subsequent coping phases of VTE, thus representing an important target area for nursing intervention.

Cited by 16 publications

References 33 publications

Patients&rsquo; Experiences of LIving with CANcer-associated thrombosis: the PELICAN study

Patients&rsquo; Experiences of LIving with CANcer-associated thrombosis: the PELICAN study

Primary Thromboprophylaxis in Ambulatory Cancer Patients: Where Do We Stand?

A feasibility study to inform the design of a randomised controlled trial to identify the most clinically effective and cost-effective length of Anticoagulation with Low-molecular-weight heparin In the treatment of Cancer-Associated Thrombosis (ALICAT)

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Resources

About

Patients’ Experiences of LIving with CANcer-associated thrombosis: the PELICAN study

Patients’ Experiences of LIving with CANcer-associated thrombosis: the PELICAN study