TY - JOUR
T1 - Perceived Care and Well-being of Patients With Cancer and Matched Norm Participants in the COVID-19 Crisis
T2 - Results of a Survey of Participants in the Dutch PROFILES Registry
AU - van de Poll-Franse, Lonneke V
AU - de Rooij, Belle H
AU - Horevoorts, Nicole J E
AU - May, Anne M
AU - Vink, Geraldine R
AU - Koopman, Miriam
AU - van Laarhoven, Hanneke W M
AU - Besselink, Marc G
AU - Oerlemans, Simone
AU - Husson, Olga
AU - Beijer, Sandra
AU - Ezendam, Nicole P M
AU - Raijmakers, Natasja J H
AU - Wollersheim, Barbara M
AU - Hoedjes, Meeke
AU - Siesling, Sabine
AU - van Eenbergen, Mies C
AU - Mols, Floortje
N1 - Funding Information:
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 Information:
Funding/Support: This work was supported by the Dutch Research Council—Investment Grant Large (2016/04981/ZONMW-91101002).
Publisher Copyright:
© 2021 American Medical Association. All rights reserved.
Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2021/2/1
Y1 - 2021/2/1
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85097055396&partnerID=8YFLogxK
U2 - 10.1001/jamaoncol.2020.6093
DO - 10.1001/jamaoncol.2020.6093
M3 - Article
C2 - 33237294
SN - 2374-2445
VL - 7
SP - 279
EP - 284
JO - JAMA Oncology
JF - JAMA Oncology
IS - 2
ER -