Online survey of cancer patients on changes in care and on psycho-social burden during the pandemic

ABSTRACT

Introduction: In March 2020, the spread of Sars-Cov2 was declared a global pandemic. Consequently, policy makers have prioritized health care services to treat serious cases. This has affected the care for other vulnerable patients, such as those with cancer. The aim of this survey is to provide insight into how changes in medical care during a pandemic affect cancer patients in terms of psychosocial distress and economic consequences. Methods: Using an anonymized online questionnaire, we examined a convenience sample of cancer patients who contacted DKFZ's cancer information service with questions regarding their disease between July 2020 and June 2021. The questionnaire captures information on cancer type, disease phase and changes in cancer care and includes items assessing distress and financial impact. Results: An interim evaluation with data collected from July 2020 to January 2021 (n=372;35% return rate) showed a median age of 60 years (IQR 50-68), 76% were women, and breast cancer was the most frequent cancer type (51%). The majority of patients had completed primary treatment (42%), 24% of respondents were still under active primary treatment, and 25% reported a cancer recurrence or were in an advanced phase. Overall 14% (n=51) of patients reported changes in medical care. Changes occurred most often in the context of follow-up care (69%), treatment control checks (29%), and drug-based tumour therapy (20%). 37% of the overall sample agreed or strongly agreed to worrying that the pandemic might affect their quality of care, and 66% missed personal contact with family and friends rather or very much. Regarding finances, 68% reported increased expenditures for health care due to their cancer, 18% additional expenditures due to the pandemic, and 17% a loss of income. Conclusions: Results confirm that cancer patients' well-being and finances, in addition to treatment and care, have been affected by the corona pandemic. Based on this data, a larger trend study is planned with representative samples of patients from an epidemiological cancer registry. In view of the observed changes to cancer care during the pandemic, it is important that health care systems are fully prepared for a crisis, and ascertain equitable care for all patients. Our results underscore cancer patients' vulnerabilities. As the study covers the whole range of effects of the pandemic on patients, results may help to assess needs and prioritize services and support accordingly.