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Cancer patient perspective in the arena of COVID‐19 pandemic

Abstract Objective The coronavirus disease 2019 (COVID‐19) outbreak has been declared a global pandemic of unprecedented proportions. Italy is a country which has been heavily affected. Cancer patients are at a higher risk owing to their intrinsic fragility related to their underlying disease and oncologic treatment. Against this backdrop, we conducted a survey to investigate how patients perceived their condition, clinical management and availability of information during the pandemic. Methods Between 15 April and 1 May 2020 a survey was submitted to cancer patients at oncology departments in the Marche region. Questions regarding the perception of personal safety, continuity of cancer care, information quality and psychological distress. Results Seven hundred patients participated in the survey; 59% were female and 40% were aged between 46 and 65. The majority of the participants perceived compliance with appropriate safety standards by cancer care providers and 80% were reassured about their concerns during the medical interview. 40% were worried of being at a higher risk of infection and 71% felt they were at a greater risk because of chemotherapy. 55% felt that postponing cancer treatment could reduce its efficacy, however 76% declared they did not feel abandoned at the time of treatment postponement. Patients between 46 and 65 years declared a significant reduction in sleep (p < 0.01) and in concentration (p = 0.03). Conclusions The emergency care offered to cancer patients has been deemed satisfactory in terms of both safety standards and care management. However, the majority of participants perceived the mutual negative influence between their oncologic disease and the risk of infection highlighting the need for special measures to ensure safe continuity of care.


| Statistical analysis
Demographic characteristics and answers were reported using relative frequency distribution.
The association between demographic characteristics and answers to questions regarding perception of personal safety, compliance with safety standards, continuity and quality of care and psychological distress was estimated by Chi square analysis.
A level of 0.05 was chosen to assess the statistical significance.
Statistical analysis was performed with STATA MP.11.0 software.

| RESULTS
A total of 700 cancer patients participated in the survey. The majority of them were 46-65 years old (40%), more than 50% were over 65 (51%) and more than half of the patients involved were women (59%). Regarding educational level, 18% had only attended primary school, 29% and 37% had secondary and high school degrees respectively, and 15% had a bachelor's degree or higher ( Table 1).
The majority of patients interviewed declared they had undergone the triage for suspected COVID-19 symptoms (82%) when attending the Oncologic Day Hospital and they confirmed that the hospital complied with safety procedures (94%).
However, almost 40% of patients felt themselves to be at greater risk of contagion at the time of access to an oncology department, more than 70% perceived themselves and their family members at higher risk of infection compared to other people (71% and 73%, respectively), both due to the perceived need of systematic hospital access and immunosuppression induced by oncological treatment.
The majority of patients declared that oncologic professionals demonstrated competence in the COVID-19 emergency and the instructions provided by healthcare staff were judged as homogenous (80% and 72%, respectively) ( Table 2).
Physicians and nurses were said to be easily contactable (by phone and/or email) according to the majority (88%) of patients interviewed, and 539 patients (77%) thought that during physical examination and medical interview an adequate amount of time had been dedicated to them in order to allow them to understand medical recommendations (Table 3).
They declared that medical staff gave importance to their concerns and fears and patients did not feel any sense of abandonment by healthcare professionals during the pandemic (80% and 76% respectively) ( Table 3).  -41 When assessing opportunities for improvement, more than half of interviewed patients (55%) felt worried about postponing scheduled treatments, believing this to be an issue that could compromise the efficacy of their treatment.
The majority of them (61%) complained that no alternative facility contact details were provided by the oncology departments in the event that the department would not be able to respond to their needs (Table 3).
Despite the perceived safe environment and the perceived homogeneity in medical recommendations, about one patient out three slept less, had a change in appetite and less ability to concentrate and reported a worse mood than usual (Table 4).
Statistical analysis did not reveal any significant association between concern about personal or family contagion and gender T A B L E 2 Responses to questions concerning perception of personal safety and oncologic department compliance with safety standards

| DISCUSSION
By investigating the perspectives of cancer patients, our survey reveals that oncology departments were considered satisfactory in terms of providing care management safely during the COVID-19 pandemic.
More than half of the patients interviewed were women. Several studies have shown that female participation in surveys tends to be higher than male participation, possibly owing to their different attitudes and interests. 8 There were no other elements denoting imbalance in the sample if we consider the remaining demographic variables and general population features. 9 Although 14% of cancer patients declared that they had not Furthermore, our survey demonstrated a conflicting scenario since 71% of patients felt at greater risk than the general population and stated that they were worried for their family members too, who could be at greater risk of contagion. 10,11 Cancer patients, particularly those who are in therapy, have been considered to be at increased risk of mortality from COVID-19. This assumption had a great impact on scheduled treatment and on clinical reorganization and induced anxiety and fears in patients, as well as in oncology healthcare professionals. 7,12 At the time of attending the oncology department, 41% of patients expressed concerns of being at higher risk of infection upon entry and this emotional status could lead to a loss of compliance and to giving up attending the hospital to receive the necessary treatment which could lead to a potentially dangerous situation for the patient. 7,13 To the best of knowledge, there is no sufficient data about increased risk of mortality from COVID-19 favored by anticancer treatments, hence scheduled administration should be respected in order to avoid a loss of benefit, in this difficult time.
Despite perceived safety and the absence of strong prognostic data, patients perceived a higher personal risk compared to other people 7,13-15 and this was reflected in a worsening of mood and a negative change in daily habits.
Overall, the most psychologically frail group was represented by female patients, aged between 46 and 65, and those in employment, confirming data from many other published sources in which supportive care program need emerged, in order to cope, especially for female patients. [16][17][18][19] There is support for the role of gender in other literature when considering the prevalence of psychological distress as women are consistently reported to be more distressed than men, partly due the division of responsibilities and privileges afforded to each sex in today's society. During this pandemic, these gender differences were highlighted in female patients and health workers. 20 Results from patients with a lower level of education confirm that this is associated with worries and fears which are probably due to a lower health literacy and the consequent cognitive impact caused by inaccurate risk perception. 21,22 The cancer experience is portrayed as a continuous evolution of the disease and, with this, the emotional evolution of the subject who perceives himself as increasingly vulnerable in the cancer care continuum. Cancer patients reveal multidimensional needs over time, the components of which change during the course of treatment and as the disease progresses. 23 The COVID-19 pandemic has affected the

| CONCLUSIONS
As indicated from the findings, our survey revealed that we needed to do more to manage the array of needs presented by cancer patients during the COVID-19 pandemic.
Although the oncology departments worked at high levels of safety, our survey underlined the importance of taking global care of cancer patients, from the management of their diseases, to the management of their fears, their perceptions of being a burden, as well as their feelings of aggravation and isolation. Inevitably, all these emotions are amplified by a health emergency like a pandemic and the oncologist has a fundamental role to fulfill in managing all of these elements, organic and emotional, because the cancer patient is not just an internist patient, but rather has an emotional and cognitive complexity caused by the nature of the disease.

ACKNOWLEDGMENTS
We thank all oncology health workers who kindly cooperate in this work and all voluntary participants.

Open Access Funding provided by Universita Politecnica delle
Marche within the CRUI-CARE Agreement.
All other authors declare that they have no conflicts of interest to declare.

DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the corresponding author upon reasonable request.