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

This cross-sectional study assesses how patients with cancer perceive cancer treatment and follow-up care (including experiences with telephone and video consultations) and patients' well-being in comparison with a norm population during the COVID-19 pandemic. 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.

Automated summary

This cross-sectional study in the Netherlands found that during the COVID-19 crisis, up to 29% of cancer patients had their appointments canceled or replaced by telephone or video consultations. Quality of life, anxiety, and depression were comparable between cancer patients and norm participants, but norm participants reported loneliness more frequently. The study suggests that long-term evaluation is needed to monitor the impact of the crisis on cancer care and patient well-being.