The coronavirus disease 2019 (COVID-19) pandemic poses an unprecedented threat to health systems worldwide. During the first year of the pandemic, there were more than 110 million confirmed COVID-19 cases globally and more than 2.6 million deaths.1 In terms of scale, the number of COVID-19 cases during that period was at least sixfold more than the global number of new cancer cases in 2018; the mortality during that period exceeded the combined mortalities of lung cancer and breast cancer in 2018.2 The many consequences of COVID-19 have included unprecedented disruptions to cancer care services,3 4 5 such as cancellations of outpatient appointments to delays in scheduled systemic treatments and radiotherapy; during periods of increased transmission, such disruptions have forced oncologists to make difficult decisions in attempts to balance patient protection and disease control. There have been similar impact to the delivery of oncology-related allied health services, including physical therapy and occupational therapy,6 dietetics,7 diagnostic imaging,8 and psychological services for patients with cancer9; there has been a particularly large shift in the use of telemedicine. Throughout the COVID-19 pandemic, and particularly during periods of increased transmission, good multidisciplinary coordination has been a crucial aspect of cancer care. By acquiring comprehensive knowledge regarding perceptions of the pandemic, changes in healthcare-seeking behaviour, impact on daily life, and the newly emerged unmet needs (physical, socio-economic, and psychological) of patients with cancer, multidisciplinary cancer caregivers can customise and adjust their services accordingly, thus enabling appropriate resource allocation. Considering these challenges, we designed and conducted a prospective study to comprehensively examine the real-world impact of COVID-19 on patients with cancer; we sought to identify actionable solutions from the perspective of experienced multidisciplinary cancer caregivers.

A prospective survey regarding the perspectives of patients with cancer on the impact of the COVID-19 pandemic was jointly developed by a multidisciplinary team at Queen Elizabeth Hospital, Hong Kong that consisted of clinical oncologists, clinical psychologists, physiotherapists, occupational therapists, and dieticians specialising in cancer care. A pilot survey was administered to 88 patients, followed by interviews to further assess patient understanding of the questions and to develop additional items via thematic analysis. The multidisciplinary team then refined the questionnaire. The final version consisted of 64 items with a combination of Likert scales and polar questions; it covered topics such as patient perceptions of cancer care resources, treatment delivery and quality, changes in healthcare-seeking behaviour, adequacy of available pandemic-related information, social distancing–related adverse impact, and psychological repercussions of the pandemic. We also invited patients who were newly diagnosed with cancer to complete an extended questionnaire which focused on psychometric measurements of post-traumatic stress disorder (PTSD) [the PTSD Checklist for DSM-5 (PCL-5)],10 anxiety and depression (the Emotion Thermometers tool),11 and intolerance of uncertainty (the Intolerance of Uncertainty Scale-12 [IUS-12]).12 Patients were then stratified into risk groups. High-risk individuals had scores of ≥5 on the abbreviated PCL-5 scale,13 ≥3 on the Emotion Thermometers for depression or anxiety,14 and ≥25 on the IUS-12 scale.11 Associations between patient perceptions and psychological risk were then explored. Full details of the patient questionnaire are shown in online supplementary Table 1.

Furthermore, we surveyed clinical oncologists in Hong Kong (practising in Queen Elizabeth Hospital, United Christian Hospital, and Buddhist Hospital) regarding their perceptions of the pandemic; the oncologists were also asked to predict the responses of patients with cancer in various domains of interest.

The patient survey was conducted between 12 and 22 May 2020 at Queen Elizabeth Hospital. Patients with cancer and survivors aged ≥18 years who attended their outpatient oncology appointments were invited to participate. Patients who could not read English or Chinese were excluded, and participation was voluntary. Detailed survey information was provided on the questionnaire cover sheet, and a patient’s decision to participate in the survey was regarded as informed consent. Hardcopies of the questionnaire were anonymously completed by participants on site, then collected by dedicated nursing staff.

Descriptive analysis was used to describe various impact of the pandemic on patients. Patient demographics, disease characteristics, treatment details, and socio-economic information were summarised. Qualitative data are presented as the percentage of respondents who selected a particular response. Chi squared tests were used to determine associations between responses and categorical patient factors. P values <0.05 were considered indicative of statistical significance. Analyses were performed using SPSS software (Windows version 25.0; IBM Corp, Armonk [NY], United States).

Between 12 and 22 May 2020, 650 patients with cancer were invited to participate in the survey; 424 responses were received, yielding a response rate of 65.2%. Demographic and clinical characteristics of the participants are presented in the Table. Most survey respondents were female (70.0%), and more than half were aged 46 to 75 years. Nearly half (46.0%) of the respondents were receiving active cancer treatment. The cancer stage was III or below in half of the respondents and 20.3% of respondents were at stage IV; 29.2% of respondents were uncertain of their staging. Almost half (43.9%) of the respondents had a monthly family income of <HK$16 000 (around US$2000), which is Hong Kong’s 2018 poverty line for a family of three.15

As shown in online supplementary Table 1, most respondents (82.8%) believed that patients with cancer are more susceptible to COVID-19, while more than half (52.1%) believed that cancer-related resources will be depleted and 59.3% were concerned that healthcare workforce shortages during the pandemic would harm their treatment. Overall, 65.6% of respondents were concerned that COVID-19 would lead to delays in anti-cancer drug development. These concerns were significantly associated with education level of patients, in which the more educated respondents demonstrated less concern (tertiary level 57.6% vs secondary 64.4% vs primary 71.4%, P=0.01) [Fig 1a].

As shown in online supplementary Table 1, fewer than one-third of respondents (30.9%) felt that it was safe to attend hospital appointments during the pandemic (the proportion was greater among men than among women: 37.8% vs 27.8%). Furthermore, most respondents reported that their willingness to attend oncology clinic appointments (73.1%) or undergo clinical tests (80.2%) was unaffected. Age (P=0.021), sex (P=0.029), and education level (P=0.003) were factors significantly associated with patient willingness; respondents aged 18-45 years or >75 years, female, and more educated individuals were more hesitant to attend their scheduled appointments (Fig 1b).

Compared with the pre-pandemic period, most respondents (79.0%) stated that they were equally willing (65.1%) or more willing (13.9%) to seek medical attention now if they felt unwell. Overall, 62.2% of respondents were equally willing or more willing to be hospitalised if requested by their oncologists. Male respondents were more willing to be hospitalised, compared with female respondents (68.3% vs 59.2%); additionally, respondents receiving radical treatment were more willing to be hospitalised, compared with respondents receiving palliative treatment (71.3% vs 59.0%).

Nearly all respondents (98.4%) felt that it was acceptable for medical staff to maintain an increased physical distance from patients during consultations, and most (83.3%) felt that it did not negatively impact the quality of their clinic experience. During the pandemic, some clinically stable patients were exempt from the requirement for oncologist examination prior to medication refills. Overall, 59.9% of respondents felt that such an arrangement should continue beyond the pandemic period (male respondents vs female respondents: 69.3% vs 55.9%; respondents receiving radical treatment vs respondents receiving palliative treatment: 54.4% vs 69.2%).

Concerning the effects of the pandemic on plans for cancer treatment, most respondents stated that their decisions to receive chemotherapy (70.3%) or radiotherapy (67.9%) were unaffected. However, 46.5% of the respondents were willing to accept changes in treatment efficacy or side-effect profile to allow an outpatient regimen; this preference was particularly strong among respondents receiving palliative treatment (61.5%), compared with respondents receiving radical treatment (33.7%).

As shown in online supplementary Table 1, half of the respondents (49.1%) spent an average of 10 to 30 minutes daily interacting with news and information sources focused on COVID-19. Their most common news sources were television (41.7%), the internet (28.0%), and newspapers (12.9%). Only 3.5% of respondents received pandemic-related news or information from their hospitals. Young respondents (<45 years) were significantly more likely to receive news primarily from the internet, compared with older respondents (>75 years) (37.6% vs 13.4%; P=0.001); such a difference was also present between respondents with different education levels (tertiary education vs primary education: 35.5% vs 17.4%; P=0.001) and between respondents with different levels of monthly family income (>HK$40 000 vs <HK$16 000: 32% vs 25%; P=0.006).

Concerning the adequacy of information received regarding COVID-19 and its impact on patients with cancer, more than half of the respondents (54.1%) felt that it was inadequate; this sentiment was more prevalent among respondents with a higher education level, compared with those who were less educated (tertiary vs primary level: 60.2% vs 40.3%; P=0.017) [Fig 1c].

During the pandemic, social distancing became the new daily norm. Nearly half of the respondents (49.5%) reported exercising less, whereas 10.4% reported exercising more. In general, 55.4% of respondents noticed an overall deterioration in their physical well-being (Fig 2a); about one-third of respondents (32.1%) reporting reduced walking tolerance, and 25.9% of respondents noticed some reduction in limb power (online supplementary Table 1).

With respect to patient preferences regarding physiotherapy delivery during the pandemic, 42.9% of young respondents (18-45 years) preferred online sessions, whereas 50.0% of older respondents (>75 years) preferred home visits by a therapist [Fig 2b]. Education level (P=0.029) and income (P=0.034) were significantly associated with patient preference. Respondents with a higher education level (tertiary vs primary level: 33.3% vs 16.3%) and respondents with a higher income (monthly income >HK$40 000 vs <HK$16 000: 50.3% vs 26.0%) preferred online sessions, rather than in-person sessions.

During the period of social distancing, 64.5% of older respondents (>75 years) felt that their lives had become monotonous and lonely; significantly fewer (39.3%) younger respondents (<45 years) expressed this sentiment. Most respondents (58.0%) agreed that their home care support had improved because family members spent more time together; this sentiment was more prevalent among older respondents (>75 years) [70.9%].

As shown in online supplementary Table 1, the pandemic caused dietary habit alterations in 38.9% of respondents. Approximately one-fifth of respondents reported reduced appetite (22.2%) and increased consumption of junk food (processed or ready-made meals) (19.3%). Significantly more respondents in the low-income subgroup reported reduced appetite, compared with respondents in the high-income subgroup (30.6% vs 8.2%, P=0.001). Notably, the use of face masks led to a reduction in meal frequency among 30.7% of respondents; this reduction was more prevalent among respondents with lower income, compared with respondents who had higher income (32.6% vs 23.2%).

Overall, 41.0% and 23.1% of respondents had recently experienced anxiety and/or depressed mood. In total, 103 consecutive newly diagnosed patients responded to the extended psychometric questionnaire. The results revealed greater levels of concern regarding the impact of COVID-19 on cancer care manpower and the risk of infection during outpatient clinic waiting time in patients with higher risks of PTSD (P=0.011 and P=0.015, respectively), anxiety (P=0.013 and P=0.034, respectively), depression (P=0.017 and P=0.043, respectively), and uncertainty intolerance (P=0.004 and P=0.044, respectively) [Fig 2c]. A high IUS-12 score (uncertainty intolerance) was associated with the presence of greater concern regarding the effects of the pandemic on cancer research and drug development (P=0.03). As shown in online supplementary Table 2, respondents with a high risk of anxiety were less likely to agree with the ‘no visiting’ policy of hospitals (P=0.013). More respondents with high risks of anxiety (P=0.024) and depression (P=0.044) felt that there was an insufficient amount of information available in the media regarding the impact of COVID-19 on patients with cancer (Fig 2d). Moreover, respondents with a high risk of PTSD demonstrated significantly greater concern when asked about their fear of being infected by their caregiver or family members, compared with respondents who had a low risk of PTSD (P=0.005). Detailed results of the psychometric questionnaire are shown in online supplementary Table 2.

We invited 30 practising clinical oncologists to predict patient healthcare-seeking behaviour during the pandemic. All 21 responding oncologists predicted significant reductions in patient willingness to attend appointments and patient willingness to be hospitalised, but most patients reported no change in either type of willingness (73.3% and 54.7%, respectively). A greater proportion of oncologists (50.0%) than patients (16.7%) reported a negative impact on their clinic experience because of doctor-patient distancing measures (Fig 3a). Furthermore, when asked about their confidence in identifying the cause of a new fever (COVID-19–related vs other causes), most oncologists reported little (73.3%) or no confidence (13.3%), whereas almost half of the patients (47.4%) reported that they were quite or very confident in their ability to identify the cause of a new fever (Fig 3b).

This study investigated the perceptions of patients with cancer regarding the real-world impact of COVID-19 (during the early days of the pandemic) through the perspective of a multidisciplinary team that included clinical oncologists, clinical psychologists, physiotherapists, dieticians, and occupational therapists. Using a comprehensive set of questions, we identified key concerns, unmet needs, perceptions, and expectations of patients with cancer at different stages in their cancer care journeys. Cancer care16 and pandemic management17 are both resource-intensive endeavours. Because the COVID-19 pandemic has become the focus of healthcare worldwide, it is understandable that patients with cancer are concerned about pandemic-related negative impact on cancer care resources. Our results suggest that patients with cancer remained committed to attending scheduled appointments, despite the perceived risk of COVID-19 during the early days of the pandemic. This sustained clinical demand—along with general acceptance among patients regarding COVID-19 adaptive measures (staff-patient distancing), streamlined services (prescription-only clinics), and outcome trade-offs (efficacy and side-effect profile)—allowed our oncology services to continue with minimal disruptions despite the reduced availability of healthcare resources. Nevertheless, only 30.9% of surveyed patients felt that it was safe to attend the hospital; this observation highlights the need to ensure patients are informed about hospital safety measures for COVID-19 management, with details regarding rationale and efficacy. This study also revealed a discrepancy between male and female patients in terms of healthcare-seeking behaviour; moreover, patients receiving radical treatment demonstrated different perceptions and needs, compared with patients receiving palliative care. Oncology healthcare providers should consider the unique needs of various patient groups when implementing pandemic management strategies.

Between the initial outbreak and the time of this survey, the general public’s understanding of COVID-19 heavily relied on mainstream media coverage,18 which often did not focus on the needs of specific patient groups. International guidelines regarding cancer management during the pandemic began to emerge later in 2020,19 but they mainly targeted medical professionals. Accordingly, patients with cancer felt that the COVID-19–related information provided to patients was inadequate. This perception was particularly prevalent among patients with a higher education level, who tended to obtain news and information more frequently from multiple sources (eg, the internet and social media). Notably, this situation highlights the phenomenon of ‘the more you know, the more you realise you don’t know’, thereby emphasising the presence of an additional information barrier for underprivileged patient groups.20 The situation is further complicated by the presence of COVID-19–related misinformation, which has been widespread on social media since 2020.21 The findings in this study provide insights concerning the distinct pandemic-related information preferences and needs among patients according to age, education level, and income. Cancer services should focus on addressing these preferences and needs by providing patients with current COVID-19–related information from official sources, ensuring that the hospital remains a source of verified and practical pandemic-related information accessible to all patients.

The consequences of social distancing (eg, reduced exercise, poor diet, increased financial burden, and loss of social interactions) are detrimental to the physical and psychological well-being of patients with cancer,22 23 24 potentially reducing cancer treatment tolerance and compromising outcomes. Although the impact of pandemic-related lockdowns on dietary patterns of diabetic patients25 and older population26 have been studied, there are limited prospective data regarding the nutritional status of patients with cancer and their needs during the pandemic. This study has revealed some real-world patient needs, particularly among socio-economically disadvantaged patients; it also highlights the importance of individualised dietetic and occupational health assessments and early interventions (inpatient or outpatient) by dieticians and occupational therapists who specialise in cancer care. Dedicated self-help materials prepared by allied health professionals to address the adverse effects of social distancing may also serve as effective resources.

When the pandemic began, telerehabilitation emerged as a promising alternative method for patient–clinician interactions, with effective use in a physiotherapy context.27 28 However, our findings indicate that telerehabilitation may not be universally welcomed, particularly among older patients. Turolla et al29 described the challenges of implementing telerehabilitation; our findings highlight the need to carefully examine telemedicine accessibility and ‘telehealth literacy’30 among socio-economically underprivileged populations.31 32 When possible, conventional physiotherapy and rehabilitation should remain available, particularly for older adults, less-educated individuals, and low-income patients.33 Our findings offer a rationale for triaging appropriate patients towards telemedicine; they also highlight the need for improving telemedicine quality and access, as well as the importance of ensuring that alternatives are available.

This study demonstrated that psychometric analysis is a meaningful tool for identifying at-risk populations of patients with cancer during the pandemic. Patients in psychological high-risk groups clearly demonstrated distinct perceptions, expectations, and needs when simultaneously confronted with a cancer diagnosis and the COVID-19 pandemic. Without effective management, such patients could experience long-lasting psychiatric morbidities, as revealed during the severe acute respiratory syndrome epidemic in 2003.34 35 Wang et al36 emphasised the importance of mental healthcare attention and resources for patients with cancer during the COVID-19 pandemic. Along with routine cancer care, targeted psychotherapies and follow-up care for both the acute impact and long-term sequelae of COVID-19 are needed.

Oncologists and patients with cancer have different perceptions of cancer symptoms, treatment priorities, and psychosocial needs.37 38 39 We found that oncologists tended to underestimate patient motivation to avoid treatment interruptions, as well as patient risk acceptance, consistent with the observation by Catania et al40 that patients with cancer were more concerned about their cancers than about the pandemic. Moreover, compared with oncologists, a greater proportion of our surveyed patients expressed confidence in identifying COVID-19 symptoms. These results illustrate differences in priorities and perceptions of pandemic severity, along with the challenge of balancing disruptions to cancer treatment and maintaining COVID-19–related safety.

The following are some proposed interventions to minimise the impact of COVID-19 on cancer patients:
1. Ensure that patients are informed about hospital safety measures for COVID-19 management, with details regarding rationale and efficacy.
2. Ensure that healthcare staff maintain appropriate physical distance from patients.
3. Operate prescription-only clinics and lengthen follow-up intervals for clinically stable patients.
4. Triage appropriate patients towards telemedicine; enhance general telehealth literacy by implementing user-friendly interfaces, step-by-step demonstrations, and support hotlines.
5. Establish a regularly updated COVID-19–related newsfeed that is customised for patients with cancer.
6. Work with dieticians, physiotherapists, and occupational therapists to create self-help pamphlets that can guide patients with cancer in coping with the effects of social distancing; facilitate the establishment of virtual support groups for patients with cancer.
7. Implement early allied health assessments and interventions for at-risk patients.
8. Ensure early psychological support, particularly for newly diagnosed patients.
9. Compassionately and flexibly enforce restrictive measures for newly diagnosed patients, individuals approaching the end of life, and selected at-risk patients.
10. Periodically review these measures as the pandemic progresses.

To our knowledge, this is one of the first studies to simultaneously explore perceptions of the real-world impact of the COVID-19 pandemic among patients with cancer and oncologists. Importantly, the efforts of the multidisciplinary team to construct the questions contributed to a multidimensional, holistic understanding of issues and unmet needs that affect patients with cancer at different stages of their cancer care journeys. Because of the in-person survey invitation and paper-and-pen methodology, our survey achieved a high response rate of 65%, ensuring that the results are representative of the surveyed population. However, sampling bias was present because survey respondents were patients who physically attended their clinic appointments; data were missing for around 10% of patients who declined to attend their clinic appointments. Furthermore, this survey was conducted within a short interval (2 weeks) towards the end of the first wave of the COVID-19 pandemic in Hong Kong, when there was a gradual easing of lockdown policies and personal protective equipment availability began to improve41; thus, this cross-sectional assessment may not adequately reflect the evolution of patient perceptions regarding the COVID-19 pandemic. Other key limitations of the study include its inclusion of patients from a single cancer centre, as well as the exclusion of patients who could not read Chinese or English and patients who underwent treatment in private clinics. There is a need to repeat the study at various time points throughout the pandemic; future analyses should focus on other affected countries and patient populations.

This multidisciplinary survey concerning the effects of the COVID-19 pandemic impact revealed key care priorities among patients with cancer, as well as their unmet needs; in particular, it highlighted the importance of distinct priorities and needs among socio-economically underprivileged groups and patients with diverse psychological phenotypes. Oncologists should be aware that their own perceptions of pandemic-related effects differ from their patients’ perceptions. These findings should be carefully considered as multidisciplinary teams modify their delivery of cancer care services during and after the pandemic.

Concept or design: KKH Bao, KM Cheung, JCH Chow.
Acquisition of data: All authors.
Analysis or interpretation of data: KKH Bao, KM Cheung, JCH Chow.
Drafting of the manuscript: KKH Bao, KM Cheung, JCH Chow.
Critical revision of the manuscript for important intellectual content: All authors.

All authors had full access to the data, contributed to the study, approved the final version for publication, and take responsibility for its accuracy and integrity.

All authors have disclosed no conflicts of interest.

We thank all multidisciplinary team members and participating patients for their efforts and contributions.

This research has been presented in part as poster presentations at the following conferences:
1. ESMO Congress 2020, virtual, 19-21 Sep 2020 (title: Cancer patients’ perspectives on the real-world impact of COVID-19 pandemic: a multidisciplinary survey)
2. ESMO Asia Congress 2020, virtual, 20-22 Nov 2020 (title: Psychometric interplay of the perception of the real-life impact of COVID-19 pandemic: a cross-sectional survey of patients with newly diagnosed malignancies)

This research was supported by the Hong Kong Hospital Authority Kowloon Central Cluster Research Grant 2020 (Ref No.: KCC/RC/G/2021-B01).

The study was approved by the Kowloon Central/Kowloon East Cluster Clinical Research Ethics Committee of Hospital Authority, Hong Kong (Ref No.: KC/KE-20-0126/ER-1). All eligible respondents explicitly agreed to join the panel and provided informed consent to participate in the study.

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