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

Lonneke van de Poll-Franse*, B.H. de Rooij, N.J.E. Horevoorts, A.M. May, netherlands comprehensive, M. Koopman, H.W.M. van Laarhoven, M.G. Besselink, S. Oerlemans, O. Husson, S. Beijer, N.P.M. Ezendam, N.J.H. Raijmakers, B.M. Wollersheim, M. Hoedjes, S. Siesling, M.C. van Eenbergen, F. Mols

*Corresponding author for this work

Research output: Contribution to journalArticleScientificpeer-review

5 Citations (Scopus)
71 Downloads (Pure)


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.

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.

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.
Original languageEnglish
Pages (from-to)279-284
JournalJAMA Oncology
Issue number2
Publication statusPublished - 2021


  • QLQ-C30


Dive into the research topics of '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'. Together they form a unique fingerprint.

Cite this