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Patients and Non-Oncology Doctors Struggle to Keep up with the Pace of Change in Oncology, Research Shows [ESMO Congress 2021 Press Release]

  • Widespread unawareness among cancer patients of how immunotherapy works and how much it costs
  • Non-oncology doctors’ knowledge of oncology is frequently not up to date, with risks in the communication with patients
  • Medical professionals call for improved patient information and more constant dialogue and collaboration between oncology specialists and GPs
17 Sep 2021

LUGANO, Switzerland - The rapid pace of developments in the oncology field, mainly brought by cancer immunotherapy, means it can be difficult for patients, the lay public as well as for doctors not specialised in oncology to keep up with the evolution of prognosis, available medicines and their potential side-effects, as revealed by results of two studies [to be] presented at the ESMO Congress 2021 suggesting a need for broader education on current standards of cancer care. (1, 2)

Immunotherapy is misunderstood by patients

kosmidis-paris

To evaluate patients’ knowledge about immunotherapy, CareAcross, a multilingual platform providing personalised education for cancer patients, conducted a survey (1) among 5,589 of its members primarily in the UK, France, Italy, Spain and Germany regarding the treatment’s mechanism of action, efficacy, side-effects and cost. “Immunotherapy has become an important therapeutic approach that is now delivered every day to thousands of patients across Europe,” said study author Dr. Paris Kosmidis, co-founder and Chief Medical Officer of CareAcross. “It is essential for these individuals to be well-informed because it is a complex treatment that is too often mistaken for a miracle cure – and the more they know about it, the better the communication with their medical team and thus the better their outcomes are likely to be.”

Asked to select an explanation of how immunotherapy works from multiple possible answers, almost half of all survey participants diagnosed with either breast, lung, prostate or colorectal cancer responded with “not sure / do not know”, while only about one in three (32%) chose the right answer that it “activates the immune system to kill cancer cells”.

Similarly, more than half of respondents believed that immunotherapy starts working immediately, with only one in five correctly stating that the treatment takes several weeks to become effective. “This is important because patients need to start their therapy with realistic expectations, for example to avoid disappointment when their symptoms take some time to disappear,” Kosmidis explained.

“Less than half of lung cancer patients (41%) gave the correct explanation of how immunotherapy works, and even though the subset of those who had actually received immunotherapy (241 patients) had as much as twice the correct answer percentages to our different questions, they overestimated its toxicity compared to other therapies,” Kosmidis reported, emphasising that the results seen in the survey reflect insufficient education.

Co-author Thanos Kosmidis, cofounder and CEO of CareAcross, was further surprised to see widespread unawareness of the cost of immunotherapy, which can exceed 100,000 euros per year for a single patient: “In an ideal world the cost of treatment would be irrelevant, but especially within Europe’s public health systems, people deserve to know about the mechanisms that enable those who need it to get access to this type of therapy.”

According to Prof. Marco Donia, Herlev-Gentofte Hospital and University of Copenhagen, Denmark, an expert on immunotherapy not involved in the studies, it would indeed be useful to improve general knowledge about a treatment that promises to be more tolerable and effective than chemotherapy, but which comes at a high cost in a context where cancer incidence is on the rise.

“It is not surprising however that subjects in this study who did not receive immunotherapy knew little about it, because as doctors we would not want to confuse our patients by talking to them about treatments that we will not offer them,” he said. “As a follow-up to this research, which is certainly among the first to investigate these questions, it would be interesting to conduct a survey focusing only on patients who are direct candidates for or are already being treated with immunotherapy, and to ask them not only what they know, but also how they would react when confronted with certain side-effects. This is important because well-informed patients who know what to expect can do 90% of the job of preventing side-effects from becoming severe by having them treated early.”

What non-specialists need to know about a hyperspecialised oncology arena

murphy-conleth

Better disseminating knowledge of how cancer care has evolved may also be useful for medical professionals outside of oncology, to improve the support patients receive along their disease journey. According to Dr. Conleth Murphy, Bon Secours Hospital Cork, Ireland, co-author of a survey (2) exploring physicians’ perceptions of cancer patient prognosis, the announcement of a cancer diagnosis is the first key moment when appropriate counselling is essential, although it is usually not made by an oncologist, but by a surgeon or general medical physician at the hospital. “Receiving this news is a traumatic experience and patients often immediately have pressing questions about what it means for their future,” said Murphy.

To assess doctors’ knowledge of current prognoses for different cancers, 301 non-oncology physicians and 46 medical and radiation oncologists were asked to estimate patients’ five-year survival rates for 12 of the most common tumour types across all stages of disease, as well as for six clinical scenarios with a defined cancer type, stage and patient characteristics such as age. Their answers were then compared to the most recent survival figures from the National Cancer Registry of Ireland (NCRI).

“The non-oncologists, a diverse group comprising general practitioners and consultants from various hospital specialties, provided accurate estimates of all-stage survival for only two of the 12 cancer types, while oncologists, who were specifically asked not to use their prognostic tools, gave the correct figures for four. In the more realistic task of prognosticating for specific clinical scenarios, the non-specialists significantly underestimated five-year survival across tumour types and were also more pessimistic than the oncologists overall,” Murphy reported. “These results are in line with what we had expected because most physicians’ knowledge of oncology dates back to whatever education they received during their years of training, so their perceptions of cancer prognosis are likely to lag behind the major survival gains achieved in the recent past.”

Confirming the frequency with which non-specialists come into contact with cancer patients, Dr Cyril Bonin, a general practitioner in Usson-du-Poitou, France, explained: “I see about 10 new cases diagnosed every year in my practice, and about 50 out of my 900 regular patients are cancer survivors currently on active treatment or cured of their illness. Considering that this figure breaks down into different tumour types, our perception of a given malignancy as family doctors is likely to be influenced also by the outcomes of the specific cases we have encountered.”

To avoid presenting people with unduly bleak expectations, Murphy recommended that all physicians who routinely interact with cancer patients in their clinic familiarise themselves with the latest statistics and trends in prognosis, while emphasising that non-oncologists should always refrain from answering patients’ questions with numbers. “In our survey, we saw that one of the most vastly underestimated five-year survival rates among non-oncologists was that of stage IV breast cancer, which has evolved considerably over time and now reaches 40% in Ireland. These patients must be spared the traumatic effects of being handed a death sentence that no longer reflects the current reality,” he argued.

Commenting on the findings, Donia stated: “Oncology is a highly specialised field with many different staging subgroups of patients and as many prognoses – and a physician working in melanoma would not necessarily know the survival rates for different types and stages of breast cancer,” he said. “It is not surprising that doctors outside the field of oncology would fare even worse, and it is not entirely realistic for us to expect practitioners who deal with hundreds of different diseases to keep up with every facet of a rapidly changing oncology landscape.”

Bonin added: “Amid this growing complexity, an important part of the family doctor’s role in a patient’s journey with cancer is reformulating information they have been given by their oncologist to give them a better understanding of their situation – and especially when it comes to the newer treatment modes, my experience is that patients don’t always understand the difference with conventional chemotherapy. More consistent communication with the oncology team about a therapy’s expected benefits, possible side-effects and impact on prognosis could help us to guide patients competently and provide the psychological support they need.”

Notes to Editors

ABSTRACT  1723P_PR embargoed until 13 September 2021, 00:05 hours (CEST)

FULL DATA SET abstract 1723P_PR embargoed until 16 September 2021, 08:30 hours (CEST)

PRESS RELEASE & ABSTRACT 1510MO_PR embargoed until 17 September 2021, 00:05 hours (CEST)

FULL DATA SET abstract 1510MO_PR embargoed until 18 September 2021, 17:30 hours (CEST)

Please make sure to use the official name of the meeting in your reports: ESMO Congress 2021

Official Congress Hashtag:  #ESMO21

Disclaimer

This press release contains information provided by the authors of the highlighted abstracts and reflects the content of these abstracts. It does not necessarily reflect the views or opinions of ESMO who cannot be held responsible for the accuracy of the data. Commentators quoted in the press release are required to comply with the ESMO Declaration of Interests policy and the ESMO Code of Conduct.

References

  1. Abstract 1510MO_PR ‘European cancer patients’ perspectives on immunotherapy’ will be presented by Paraskevas Kosmidis during the Public Policy Mini Oral Session on Saturday 18 September, 17:30 to18:30 (CEST) on Channel 5. Annals of Oncology, Volume 32, 2021 Supplement 5
  2. Abstract 1723P_PR ‘Therapeutic nihilism or therapeutic realism: Perceptions of non-oncologist physicians regarding cancer patients’ prognosis’ will be available as e-Poster as of Thursday, 16 September at 08:30 CEST. Annals of Oncology, Volume 32, 2021 Supplement 5
  3. M. Reck, D. Rodríguez-Abreu, A.G. Robinson, R. Hui, T. Csőszi, A. Fülöp, M. Gottfried, N. Peled, A. Tafreshi, S. Cuffe, M. O'Brien, S. Rao, K. Hotta, T.A. Leal, J.W. Riess, E. Jensen, B. Zhao, C. Pietanza and J.R. Brahmer. Five-Year Outcomes With Pembrolizumab Versus Chemotherapy for Metastatic Non–Small-Cell Lung Cancer With PD-L1 Tumor Proportion Score ≥ 50%. https://doi.org/10.1200/JCO.21.00174
  4. M. Donia, E. Ellebaek, T.H. Øllegaard, L. Duval, J.B. Aaby, L. Hoejberg, U.H. Køhler, H. Schmidt, L. Bastholt and I.M. Svane. The real-world impact of modern treatments on the survival of patients with metastatic melanoma. https://doi.org/10.1016/j.ejca.2018.12.002
  5. D. Waterhouse, J. Lam, K.A. Betts, L. Yin, S. Gao, Y. Yuan, J. Hartman, S. Rao, S. Lubinga and D. Stenehjem. Real-world outcomes of immunotherapy-based regimens in first-line advanced non-small cell lung cancer. https://doi.org/10.1016/j.lungcan.2021.04.007

E. O'Neill1, D. Murphy2, C. Lyons1, R. Joyce1, C.G. Murphy3

1Radiation Oncology, CUH - Cork University Hospital, Cork, Ireland, 2School Of Medicine, University College Cork, Cork, Ireland, 3Department Of Medical Oncology, Bon Secours Hospital Cork, Cork, Ireland

Background: Typically non-oncology physicians make the diagnosis of cancer and have initial discussions with patients during which questions regarding prognosis may be asked. According to Goldvaser et al., there is a lack of data on perception of cancer patients’ prognosis by non-oncology physicians. We conducted a survey among a group of Irish doctors working in medical and radiation oncology (“ONCs”, n=46) and doctors working in other areas including GPs and hospital specialties (“nonONCs”, n=301).

Methods: Participants were asked to estimate the 5 year survival of 12 common cancers (all stages combined), and also to estimate 5 year survival for 6 clinical scenarios (e.g. ‘a 47 year old woman with Stage 4 breast cancer’). Responses were compared to survival data from the National Cancer Registry of Ireland (NCRI), and between the two groups.

Results: When asked to estimate 5 year survival of common cancers with all stages combined, both ONCs and nonONCs underestimated survival of prostate cancer and melanoma, while nonONCs also underestimated survival of breast cancer, Hodgkin’s lymphoma and renal cancer. Both groups overestimated the survival of colorectal, lung, liver, gastric and pancreatic cancer. With regards to the clinical scenarios, both groups underestimated the survival of stage 3 colorectal cancer, stage 3 prostate cancer and stage 1 breast cancer, with significantly more pessimistic estimates by nonONCs (students t-test, p <0.005 in each case). Survival estimates did not differ significantly between the groups for lung cancer (stage 1 and stage 4) while nonONCs underestimated the survival of stage 4 breast cancer and were significantly more pessimistic than ONCs (p<0.005).

Conclusions: Both groups of doctors had difficulty estimating the survival of common cancers across combined stages, with ONCs estimating correctly in 4 of 12 cancers, and nonONCs in 2 of 12. The clinical scenarios showed that survival estimates are inaccurate even for defined stages among common malignancies such as breast, colorectal and prostate cancer, with greater pessimism among non-oncology doctors. Education of both oncology and non-oncology doctors is required to ensure patients are being counselled appropriately regarding prognosis.

Legal entity responsible for the study: The authors

Funding: Has not received any funding

Disclosure: All authors have declared no conflicts of interest.

P. Kosmidis, C. Lagogianni, T. Kosmidis

R&d, Care Across Ltd, London, United Kingdom

Background: Despite the efforts of scientific organisations, patients’ views of immunotherapy are unclear. CareAcross, a multilingual digital platform which provides personalised, evidence-based support to cancer patients, investigated their views on immunotherapy.

Methods: In the second half of 2020, members of the CareAcross platforms (primarily from the UK, France, Spain, Italy or Germany) responded to relevant questions.

Results: Among 5589 patients who responded, 4064 had breast (BC), 1131 lung (LC), 231 prostate (PC) and 163 colorectal cancer (CC). When asked “How does immunotherapy work?”, 55% of BC, 34% of LC, 60% of PC and 45% of CC responded either “Not Sure” or “Do Not Know”. Regarding its timing of action, most (50-61%) responded “Do Not Know”. Responses to these 2 questions are detailed below:

 

Breast  

Lung

Prostate 

Colorectal 

N (Σ=5589)  

4064  

1131  

231  

163  

 

 

 

 

 

Q: How does Immunotherapy work?  

 

 

 

 

Helps our immune system  

11%  

13%  

8%  

9%  

Stops cancer cells from affecting our immune system  

7%  

4%  

2%  

3%  

Activates our immune system to kill cancer cells  

29%  

41%  

34%  

42%  

Attacks cancer cells like our immune system  

7%  

7%  

6%  

5%  

Turns cancer cells into immune system cells  

1%  

1%  

0%  

1%  

Not sure/Do not know  

45%  

34%  

50%  

40%  

 

 

 

 

 

Q: When does it work?  

 

 

 

 

Starts as soon as treatment begins  

17%  

18%  

10%  

13%  

Starts some time after treatment begins  

18%  

25%  

21%  

18%  

Stops when treatment completes  

2%  

1%  

0%  

1%  

Continues after treatment completes  

18%  

14%  

18%  

11%  

Do not know  

52%  

50%  

56%  

61%  

When comparing immunotherapy’s side-effects with chemotherapy’s, 24% of BC, 23% of LC, 31% of PC and 34% of CC responded “Do Not Know”. Most (60-74%) perceived chemotherapy as more toxic; very few considered immunotherapy more toxic (2-5%). Compared to targeted therapy, most (58-65%) did not know. 21-26% believed targeted therapy is more toxic, and few that immunotherapy is more toxic (9-15%). Regarding costs to the healthcare system, patients were asked to compare immunotherapy, chemotherapy and targeted therapy. Most did not know (53-58%), while BC and PC patients believe that chemotherapy costs the most. Chemotherapy, immunotherapy and targeted therapy were selected as the most expensive by 23%, 11%, 6% (BC); 12%, 17%, 12% (LC); 25%, 10%, 8% (PC); and 11%, 17%, 12% (CC), respectively. Among LC patients, those receiving immunotherapy (241 of 1131) had as much as twice the correct answer percentages, except side-effects (they perceived it more toxic compared to LC patients not receiving it).

Conclusions: Most patients do not know enough about immunotherapy, its mechanism and timing of action, and its costs to the healthcare system. Among 4 cancer types, lung cancer patients (especially those treated with immunotherapy) are better informed.

Legal entity responsible for the study: Care Across Ltd

Funding: Has not received any funding - Care Across Ltd

Disclosure: All authors have declared no conflicts of interest.

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