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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
van de Poll-Franse,Lonneke de Rooij,B.H. Horevoorts,N.J.E. May,A.M. comprehensive,netherlands Koopman,M. van Laarhoven,H.W.M. Besselink,M.G. Oerlemans,S. Husson,O.
van de Poll-Franse,Lonneke
de Rooij,B.H.
Horevoorts,N.J.E.
May,A.M.
comprehensive,netherlands
Koopman,M.
van Laarhoven,H.W.M.
Besselink,M.G.
Oerlemans,S.
Husson,O.
Abstract
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. Oblective 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.
Description
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).
Date
2021
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Research Projects
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Keywords
QLQ-C30, QUESTIONNAIRE, SDG 3 - Good Health and Well-being
Citation
van de Poll-Franse, L, de Rooij, B H, Horevoorts, N J E, May, A M, comprehensive, N, Koopman, M, van Laarhoven, H W M, Besselink, M G, Oerlemans, S, Husson, O, Beijer, S, Ezendam, N P M, Raijmakers, N J H, Wollersheim, B M, Hoedjes, M, Siesling, S, van Eenbergen, M C & Mols, F 2021, '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', JAMA Oncology, vol. 7, no. 2, pp. 279-284. https://doi.org/10.1001/jamaoncol.2020.6093