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

Educational Objective
To identify the key insights or developments described in this article
1 Credit CME
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.

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Article Information

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 (

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 ( To arrange optimal long-term data warehousing and dissemination, we follow the quality guidelines that are formulated in the “Data Seal of Approval” ( 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.

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