Perceived Care and Well-being of Patients With Cancer and Matched Norm Participants in the COVID-19 Crisis: Results of a Survey of Participants in the Dutch PROFILES Registry

Key Points

Questions  How do Dutch patients with cancer perceive care and well-being during the COVID-19 crisis, in comparison with a matched norm population?

Findings  In this cross-sectional analysis within a population-based registry of 4094 Dutch patients with cancer and 977 matched norm participants, up to 29% of patients reported that their appointment was canceled or replaced by a telephone or video consultation, related to systemic therapy. Quality of life, anxiety, and depression were comparable, but norm participants significantly more often reported loneliness (12% vs 7%) than patients with cancer.

Meaning  Long-term evaluation is needed, but additional supportive care for patients with cancer does not appear to be required at this moment.

Importance  As the resolution of the coronavirus disease 2019 (COVID-19) crisis is unforeseeable, and/or a second wave of infections may arrive in the fall of 2020, it is important to evaluate patients’ perspectives to learn from this.

Objective  To assess how Dutch patients with cancer perceive cancer treatment and follow-up care (including experiences with telephone and video consultations [TC/VC]) and patients’ well-being in comparison with a norm population during the COVID-19 crisis.

Design, Setting, and Participants  Cross-sectional study of patients participating in the Dutch Patient Reported Outcomes Following Initial Treatment and Long-term Evaluation of Survivorship (PROFILES) registry and a norm population who completed a questionnaire from April to May 2020.

Main Outcomes and Measures  Logistic regression analysis assessed factors associated with changes in cancer care (treatment or follow-up appointment postponed/canceled or changed to TC/VC). Differences in quality of life, anxiety/depression, and loneliness between patients and age-matched and sex-matched norm participants were evaluated with regression models.

Results  The online questionnaire was completed by 4094 patients (48.6% response), of whom most were male (2493 [60.9%]) and had a mean (SD) age of 63.0 (11.1) years. Of these respondents, 886 (21.7%) patients received treatment; 2725 (55.6%) received follow-up care. Treatment or follow-up appointments were canceled for 390 (10.8%) patients, whereas 160 of 886 (18.1%) in treatment and 234 of 2725 (8.6%) in follow-up had it replaced by a TC/VC. Systemic therapy, active surveillance, or surgery were associated with cancellation of treatment or follow-up appointment. Younger age, female sex, comorbidities, metastasized cancer, being worried about getting severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), and receiving supportive care were associated with replacement of a consultation with a TC/VC. Patients and norm participants reported that the COVID-19 crisis made them contact their general practitioner (852 of 4068 [20.9%] and 218 of 979 [22.3%]) or medical specialist/nurse (585 of 4068 [14.4%] and 144 of 979 [14.7%]) less quickly when they had physical complaints or concerns. Most patients who had a TC/VC preferred a face-to-face consultation, but 151 of 394 (38.3%) were willing to use a TC/VC again. Patients with cancer were more worried about getting infected with SARS-CoV-2 compared with the 977 norm participants (917 of 4094 [22.4%] vs 175 of 977 [17.9%]). Quality of life, anxiety, and depression were comparable, but norm participants more often reported loneliness (114 of 977 [11.7%] vs 287 of 4094 [7.0%]) than patients with cancer (P = .009).

Conclusions and Relevance  Among patients with cancer in the Netherlands, 1 in 3 reported changes in cancer care in the first weeks of the COVID-19 crisis. Long-term outcomes need to be monitored. The crisis may affect the mental well-being of the general population relatively more than that of patients with cancer.

The coronavirus disease 2019 (COVID-19) pandemic has affected cancer care worldwide. In the Netherlands, a lockdown was introduced on March 23, 2020. Planned cancer surgical procedures and systemic treatments were delayed or stopped. The Netherlands Cancer Registry reported a 25% decrease in the absolute number of cancer diagnoses.¹ Furthermore, to prevent the potential risk of an infection, patients with cancer were advised to not visit the hospital unless strictly needed.²

As a result, cancer patient organizations were alarming the public about postponed cancer diagnoses and operations and delayed systemic treatments. Cancer centers reported high anxiety levels among patients with cancer and a “skyrocketing” demand for counseling and mental health care.³ At the same time, hospitals were quickly scaling up virtual health care by means of video consultation (VC),⁴ while others used telephone consultation (TC), as alternatives to face-to-face visits.⁵

Our research objectives were to understand (1) how patients perceive cancer treatment and follow-up care (including experiences with video and telephone consultations), and (2) the well-being of patients with cancer in comparison with an age-matched and sex-matched norm population without cancer during the COVID-19 crisis.

Cross-sectional assessment was performed within a longitudinal cohort/registry study. Patients participating in the Dutch Patient Reported Outcomes Following Initial Treatment and Long-term Evaluation of Survivorship (PROFILES)⁶ registry were asked to complete an additional COVID-19–related questionnaire if they had previously signed informed consent and gave approval to be invited for additional questionnaires. Vital status was verified on February 1, 2020. Patients were invited from April 18, 2020; a norm population—representative of the Dutch population⁷—was invited from May 4, 2020. The Institutional Review Board of the Netherlands Cancer Institute (IRBd20-115) approved this study.

Because the norm population was smaller and representative of the general Dutch population (thus younger than the cancer population), we were not able to match 1:1 without replacement. We used the frequency matching method: based on the frequency distribution by stratum (defined by age categories and sex), the number of norm participants that can be matched to the patients was maximized (n = 977).

Sociodemographic and clinical variables were obtained from the Netherlands Cancer Registry. Current cancer and therapy status was self-reported. Comorbidity was assessed with the adapted Self-Administered Comorbidity Questionnaire.⁸ Five questions about experience with TCs or VCs were derived from the questionnaire by Barsom et al.⁹ Health-related quality of life was assessed with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30),¹⁰ and a single item¹¹ was used to assess worry about health in the future. Anxiety and depression symptoms were assessed with the Hospital Anxiety and Depression Scale.¹² Loneliness was assessed with the De Jong Gierveld short scales.¹³

Logistic regression analyses were conducted to evaluate the independent association of a priori selected variables (age, sex, education level, marital status, living situation, cancer type, cancer stage, metastasis, BMI, comorbidity, current treatment, current supportive care and worry about getting severe acute respiratory syndrome coronavirus 2 [SARS-CoV-2]) with changes in treatment or follow-up care. General linear models were computed to assess the differences in health-related quality of life, worry about getting SARS-CoV-2, anxiety/depression, and loneliness between patients with cancer and matched controls, adjusted for potential confounders (education level, living situation, comorbidity, COVID-19 status). The odds of changes in treatment or follow-up appointment vs no changes were calculated, separately, for patients currently being treated/had to start treatment and for patients in follow-up. Linear, logistic, and multinomial regression models were computed to assess the differences in health-related quality of life, Hospital Anxiety and Depression Scale, and loneliness scores, respectively. All analyses were 2-sided, and P values less than .05 were considered significant. Statistical analyses were conducted using SAS, version 9.4. (SAS Institute).

The online questionnaire was completed by 4094 of 8428 patients (48.6% response) and 2351 of 3509 norm participants (67.0% response) (eFigure in the Supplement). A total of 977 of 3509 (27.8%) cancer-free norm participants could be age-matched and sex-matched to the patients with cancer (eTable 1 and eTable 2 in the Supplement). Of 886 patients who were currently being treated or had to start treatment, 96 (10.8%) had their treatment postponed or canceled, and 160 (18.1%) had their consult changed to a TC/VC. Among 2725 patients who received follow-up care, 294 (10.8%) had their appointment postponed or canceled, and 234 (8.6%) had their consult changed to a TC/VC. Variables associated with changes in treatment or follow-up are summarized in Table 1. Patients and norm participants reported that the COVID-19 crisis made them contact their general practitioner (852 of 4068 [20.9%] and 218 of 979 [22.3%]) or medical specialist/nurse (585 of 4068 [14.4%] and 144 of 979 [14.7%]) less quickly when they had physical complaints, questions, or concerns (eTable 3 in the Supplement).

A total of 394 of 3611 (10.9%) patients had their face-to-face appointment replaced by a TC (n = 375) or VC (n = 19). Of the 394 patients, some considered their appointment not at all (35 [8.9%]) or just a little (130 [33.0%]) suitable for a TC/VC, whereas 229 (58.1%) thought it was suitable (Figure). Although most patients (293 [74.4%]) preferred a face-to-face meeting, 151 (38.3%) were willing to have a TC/VC again in the future.

Patients reported lower functioning and more fatigue, dyspnea, and insomnia than norm participants, but these differences were not clinically relevant (Table 2). Patients worried more about their health in the future than the norm-population (mean [SD], 28.1 [25] vs 20.9 [23]; P < .001) and were more worried about becoming infected with SARS-CoV-2 (917 of 4094 [22.4%] vs 175 of 977 [17.9%] responded they were “quite a bit” or “very much” worried; P = .01). More norm participants than patients reported being lonely (Table 2).

Our finding that 19% to 29% of patients reported changes in treatment or follow-up within 4 to 6 weeks after the first announcement of the Dutch COVID-19 lockdown is comparable with a recent report from 7 comprehensive cancer centers that described a 20% to 30% decrease in the overall number of patients with cancer admitted to most centers.³

In line with the advice of experts^3,14 to temporarily prevent vulnerable patients from coming to the hospital, we found that patients treated with immune therapy or targeted therapy and those who had comorbid diseases or metastasized cancer were more likely to report changes in cancer care, although sometimes the odds ratios had wide CIs.

The reluctance of patients and norm participants to contact their health care clinicians in the COVID-19 crisis was consistent with the lower cancer incidence in the Netherlands in March 2020¹ and expected by general practitioners: “Patients might be reluctant to present because of fear of interacting with others, limited capacity to use video or teleconsultations, and concerns about wasting the doctor’s time.”^15(p748)

Eleven percent had their consultation converted into a TC/VC, and although the majority preferred face-to-face contact, 39% were willing to use a TC/VC again in the near future. This finding may help change our care for patients not only during the potentially long-lasting COVID-19 period, but also beyond.

The findings of the present study confirm previous anecdotal reports of patients with cancer being afraid,³ with 23% reporting to be worried about getting COVID-19. But almost similar anxiety and depression levels in the norm population, and even higher prevalence of loneliness (albeit the difference was not clinically relevant), suggest that the impact of the crisis may be larger in the norm population than in patients with cancer. Restricted social contacts and limited freedom of movement may have less impact on patients with cancer than norm participants, as they often already report decreased social functioning after a cancer diagnosis, which may not have changed much during COVID-19.

The present study has some notable strengths, including the use of the large, population-based PROFILES registry with information about cancer diagnosis, stage, and treatment, and the use of a matched norm-population and validated scales. A limitation of the study is that we only invited our online cancer participants, of whom about half responded, whereas 67% of the norm participants responded. Even though our sample included a good representation of patients in different phases of their disease, the cancer respondents reported relatively high functioning scores compared with our previous findings in similar cohorts. This may have resulted in an underestimated impact of the COVID-19 crisis on perceived changes in care and well-being, as specifically the most vulnerable patients were advised not to visit a hospital if not strictly needed.

In conclusion, up to 1 in 3 patients with cancer in the Netherlands experienced postponement or cancellation of their treatment or follow-up appointment or replacement with a TC/VC in the first weeks of the COVID-19 crisis. Longitudinal evaluation will reveal whether this has an association with their long-term health outcomes. The COVID-19 pandemic may affect the mental well-being of the general population more than that of patients with cancer.

Accepted for Publication: September 17, 2020.

Published Online: November 25, 2020. doi:10.1001/jamaoncol.2020.6093

Corresponding Author: Lonneke V. van de Poll-Franse, PhD, Department of Research and Development, Netherlands Comprehensive Cancer Organisation (IKNL), PO Box 19079, 3501 DB Utrecht, the Netherlands (l.vandepoll@iknl.nl).

Author Contributions: Dr van de Poll-Franse and Ms de Rooij had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

Concept and design: Lonneke van de Poll-Franse, de Rooij, Horevoorts, May, Vink, Koopman, Oerlemans, Husson, Ezendam, Raijmakers, van Eenbergen, Mols.

Acquisition, analysis, or interpretation of data: Lonneke van de Poll-Franse, de Rooij, Horevoorts, May, Vink, Koopman, van Laarhoven, Besselink, Husson, Beijer, Ezendam, Wollersheim, Hoedjes, Siesling, Mols.

Drafting of the manuscript: Lonneke van de Poll-Franse, de Rooij, Horevoorts, Vink, Husson, Mols.

Critical revision of the manuscript for important intellectual content: All authors.

Statistical analysis: Lonneke van de Poll-Franse, de Rooij.

Obtained funding: Lonneke van de Poll-Franse.

Administrative, technical, or material support: Horevoorts, Vink, Koopman, van Laarhoven, Oerlemans, Hoedjes, Siesling.

Supervision: Lonneke van de Poll-Franse, Vink, van Laarhoven, Mols.

Conflict of Interest Disclosures: Dr Vink reported receiving grants from Servier, Bristol Myers Squibb, Sirtex Medical, Personal Genome Diagnostics, Bayer, and Merck outside the submitted work. Dr Koopman reported receiving grants from KWF during the conduct of the study; grants from ZonMw, MLDS, Oncode Institute, Amgen, Bayer, Bristol Myers Squibb, Merck-Serono, Roche, Servier, Nordic Pharma, Sirtex Medical, and Sanofi-Aventis outside the submitted work. Dr van Laarhoven reported receiving grants from the Dutch Cancer Society and grants and nonfinancial support from the Dutch Cancer Registry during the conduct of the study; and grants from Phillips; grants, nonfinancial support, and personal fees from Bristol Myers Squibb, Lilly, Merck, Nordic Pharma, and Servier; grants and nonfinancial support from Bayer, Celgene, Janssen, and Roche; and personal fees from Merck Sharp & Dohme outside the submitted work. No other disclosures were reported.

Funding/Support: This work was supported by the Dutch Research Council—Investment Grant Large (2016/04981/ZONMW-91101002).

Role of the Funder/Sponsor: The funder had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Additional Contributions: We wish to thank the patients and their physicians from all the Dutch hospitals that participated. We thank the Netherlands Federation of Cancer Patient Organisations (NFK) for sharing their ideas about perceived impact of COVID-19 on cancer care. We acknowledge the data collection support of the PROFILES registry group, Prospective Dutch Colorectal Cancer Cohort (PLCRC) working group, Prospective Observational Cohort Study of Oesophageal-Gastric Cancer Patients (POCOP) research group, Dutch Pancreatic Cancer Project (PACAP) research group, Nationaal Borstkanker Overleg Nederland (NABON) breast cancer working group, Kanker.NL, and CentERdata/Liss panel.

Additional Information: Since 2011, PROFILES registry data are freely available according to the FAIR (Findable, Accessible, Interoperable, Reusable) data principles for noncommercial (international) scientific research, subject only to privacy and confidentiality restrictions. Data are made available through Questacy (DDI 3.x XML) and can be accessed by our website (https://www.profilesregistry.nl). To arrange optimal long-term data warehousing and dissemination, we follow the quality guidelines that are formulated in the “Data Seal of Approval” (https://www.datasealofapproval.org) document, developed by Data Archiving and Networked Services (DANS). The COVID-19 and cancer data reported in this article will be made available when the 1-year follow-up data are published.