key: cord-0805463-2l8633f1 authors: de Joode, K.; Dumoulin, D.W.; Engelen, V.; Bloemendal, H.J.; Verheij, M.; van Laarhoven, H.W.M.; Dingemans, I.H.; Dingemans, A.C.; van der Veldt, A.A.M. title: Impact of the COVID-19 pandemic on cancer treatment: the patients’ perspective date: 2020-07-04 journal: Eur J Cancer DOI: 10.1016/j.ejca.2020.06.019 sha: 915e26e3ec4ace62232d8147b59a521615f4543a doc_id: 805463 cord_uid: 2l8633f1 BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic, caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) has inevitable consequences for medical care of non-COVID-19 patients. To assess the impact of this pandemic on oncological care, a nationwide survey was conducted among cancer patients in the Netherlands. METHODS: The patients’ perspective on oncological care was investigated using an online survey between March 29(th) 2020 and April 18(th) 2020. The survey consisted of 20 questions on four topics: patients’ characteristics, contact with the hospital, consequences of the COVID-19 pandemic, and concerns about COVID-19. RESULTS: 5302 cancer patients completed this nationwide survey. Overall, 30% of patients reported consequences for their oncological treatment or follow-up. In the majority of cases this resulted in conversion from hospital visit to consultation by phone or video. The most frequently adjusted treatments were chemotherapy (30%) and immunotherapy (32%). Among patients with delay and discontinuation of treatment, respectively 55% and 63% of patients were (very) concerned about these consequences of the COVID-19 pandemic. Consequences were independent of regional differences in COVID-19 incidence. However, patients in regions with high COVID-19 incidence were significantly more concerned. CONCLUSION: This is the first study investigating perspectives of cancer patients during the COVID-19 pandemic. The study demonstrates the significant impact of the COVID-19 crisis on oncological care, indicating the need for psycho-oncological support during this pandemic. The COVID-19 pandemic, caused by SARS-CoV-2 [1, 2] , is exhausting health care system capacities and has major consequences on non-COVID-19 medical care [3] . Besides limiting capacity of medical care in general, the COVID-19 pandemic has specific impact on oncological care [4] . First, it has been reported that patients with an (active) malignancy may have an increased risk of COVID-19 [5] [6] [7] . Second, malignancy may be an independent risk factor of a more severe course of COVID-19 [5, [7] [8] [9] . Third, systemic anti-cancer treatment, such as chemotherapy, may increase the risk of a severe infection [10] . Fourth, hospital visits that are required for many cancer treatments, may put cancer patients at risk to be infected with SARS-CoV-2 [5, 8] . Considering these factors, physicians and patients are confronted with unprecedented uncertainties about the safety of cancer treatment during this pandemic, balancing between the risk of exposure to SARS-CoV-2 and the risks of postponing lifesaving or life-prolonging cancer treatments. Therefore, several (inter)national societies and committees have developed guidelines for oncology physicians [11] [12] [13] [14] . Until now, these guidelines are only based on expert opinions. Similarly, scientific evidence has not yet been generated on the impact of COVID-19 on oncological care and patients' perspectives. In this study, the impact of the COVID-19 pandemic on cancer patients and the consequences for their treatment was investigated in the Netherlands. To assess patients' perspectives on the consequences of the COVID-19 pandemic on cancer treatment and follow-up, a nationwide survey was conducted among cancer patients during the national lock down [15, 16] . No personal data were collected and questionnaires could not be traced back to the patients. To evaluate the impact of COVID-19 incidence on hospital visits and treatment, Baseline characteristics and survey responses were analysed using descriptive statistics. Cancer diagnosis not represented by a patient advocacy group (mainly rare cancers) or reported as unknown were grouped as 'other'. The following subgroups were analysed: age (age <65 vs. age ≥65 years), treatment setting (awaiting treatment, under treatment, follow-up), disease setting (cured, curable, incurable), and region of the patients' hospital (code red vs. other). Regarding question on concerns, the four selectable answers were categorized into 'not/slightly concerned' (i.e. not or slightly concerned) and '(very) concerned' (i.e. concerned and very concerned). Pearson's chi-square test was used to test for differences between specific groups. All statistical tests were performed two-sided. P-values of <0.05 were considered statistically significant. All data were analysed using IBM SPSS statistics 25 . The survey was completed by 5302 cancer patients ( 19% of patients reported that they were less inclined to contact the hospital. The COVID-19 pandemic led to consequences for treatments and hospital visits, mostly initiated by the hospital (≥79% (Figures 2 and 3) . Overall, the most frequently reported consequence was the conversion from hospital were most frequently adjusted (Figure 4a ). Delay and discontinuation of treatment also mainly included chemotherapy and immunotherapy (Figures 4b and 4c ). Many patients were concerned about the consequences of the COVID-19 pandemic for their cancer treatment or follow-up. Among patients with delay and discontinuation of treatment, 55% and 62% of patients were concerned, respectively. Among patients who did not experience consequences yet, 24% of patients were (very) concerned about potential consequences for their treatment or follow-up. In the setting of cured disease or follow-up, 87% and 83% of patients were not/slightly concerned, respectively. In total, 47% of respondents were (very) concerned to be infected with SARS-CoV-2. Patients who were under treatment were more often (very) concerned to be infected than patients in follow-up (54% vs. 40%, p<0.05). Patients with incurable disease were also more often (very) concerned than patients with curable or cured disease (55% vs. 50% and 37%, respectively, p<0.05). According to regional classification, surveys were completed by 834 (16%) patients in code red regions (23 completed surveys per 100,000 inhabitants) and 4468 (84%) patients in other regions (33 completed surveys per 100,000 inhabitants). In regions with code red, appointments were more frequently cancelled and treatments were more frequently adjusted, but these differences were not statistically significant as compared to other regions. In three specific situations, however, differences were found between code red and other regions. First, cancellation of appointments was more frequently initiated by hospitals in code red regions (99% vs. 92%, p<0.05). In code red regions, patients more frequently reported symptoms probably related to COVID-19 (13.3% vs. 10%, p<0.05). Finally, patients in code red regions were more concerned to be infected with SARS-CoV-2 than patients in the other regions (51% vs. 46%, p<0.05). According to many expert opinions, oncology physicians are very concerned about the impact of the COVID-19 pandemic on oncological care, in particular because more COVID-19 outbreaks are expected. Nevertheless, a comprehensive study on patients' perspectives has been lacking. To the best of our knowledge, this is the first study investigating perspectives of cancer patients during the COVID-19 pandemic. The survey was conducted among 5302 cancer patients in the Netherlands. As diseases is an issue of international concern. For example, a large reduction in hospital admissions for acute coronary syndrome was noticed since the COVID-19 outbreak in Italy [21] . In addition, the incidence of new cancer diagnoses has decreased significantly [22] , which is also the result of temporarily discontinuation of screening programmes for cancer [23] . In the Netherlands, a 30% decrease in the incidence of new cancer diagnosis was observed in March and April 2020 [24] . Most patients with curable disease continued their treatment unchanged, whereas treatment was more frequently postponed in patients with incurable disease. As compared to patients with curable or cured disease, patients with incurable disease were more concerned about the COVID-19 pandemic and the risk of infection with SARS-CoV-2. These concerns may be explained by fear not to be admitted to the intensive care unit in case of severe COVID-19. This fear is conceivable, as strict triage criteria were expected due to capacity issues and restrictive national guidelines for the treatment of patients with incurable malignancies. Although patients treated in code red regions were more concerned about the consequences of their oncological treatment or follow-up, the absolute differences in regional adjustments were negligible. It is conceivable that these nationwide To reduce the risk for in-hospital transmissions, treatment-related hospitalisations were limited, thereby anticipating on the expected capacity issues. In addition, the lack of scientific evidence and concerns about safety of cancer treatments may have contributed to nationwide adjustments of treatment. Although the Netherlands is a relatively small European country, the current study serves as a representative model to evaluate the impact of the COVID-19 pandemic on oncological care. As all patients have equal access to medical care in the Netherlands, reimbursement issues have most likely not contributed to the results of the current study. Therefore, the impact of the COVID-19 pandemic on oncological care is expected to be even higher in countries with unequal access to oncological care [25] . As comparable to other countries, there were significant differences in COVID-19 incidence between regions in the Netherlands (Figures 1a and 1b) . has participated in the current survey. Nevertheless, the survey had nationwide coverage and patients from all regions in the Netherlands participated in the survey. In general, most patients were (very) concerned about the impact of the COVID-19 pandemic on their oncological treatment or follow-up. In particular, patients treated in code red regions were more concerned than patients in other regions, independent of the treatment adjustments. These findings indicate that all patients could benefit from more psycho-oncological support and information, for example by use of webinars. Additional support for patients facing the daily consequences of the COVID-19 pandemic would be beneficial. This COVID-19 pandemic has inevitable consequences for healthcare systems and, as underscored by the current study, adjustments in non-COVID-19 medical care cannot be avoided. In the near future, it will be a challenge to reorganize oncological care while still facing the COVID-19 pandemic. In the Footnotes 1 NFK federates 19 national cancer patient advocacy groups and advises the government, health authorities, and health care professionals in the Netherlands. 2 SONCOS, an initiative by the Dutch societies of medical oncology, radiation oncology, and surgical oncology, represents 29 scientific societies/organisations involved in cancer care and acts as a national platform to improve the quality of cancer care. Clinical Characteristics of Coronavirus Disease 2019 in China World Health Organization. Coronavirus disease (COVID-19 World Health Organization. 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Prevalentie, Alle kankersoorten, 5-jaarsprevalentie Dingemans and A.A.M. van der Veldt have contributed to literature search, data collection, data analysis, data interpretation, and writing of the manuscript van der Veldt have contributed to the study design. V. Engelen and I.H. Dingemans have made contributions to collection of the data and the data analysis This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.