Cancer care during COVID-19: Data from 157 patient organisations

ABSTRACT

Introduction & Objectives: Representatives from 9 global cancer coalitions/alliances, including international networks of kidney and bladder cancer patient organisations, totaling over 750 cancer patient groups and the interests of over 14 million patients have come together during the pandemic to review and evaluate the patient-perspective impact. Cancer services have faced challenges as a result of COVID-19, including suspension of screening and diagnostic services;delays in diagnosis leading to higher mortality rates;cancellation/deferral of life-saving treatments;changes in treatment regimens and suspension of vital research. For organisations that provide support to cancer patients, declining income, the need to reduce staff and move to virtual working practices has put extra strain on them, while demand for support due to the pandemic has increased. Materials & Methods: 5 coalitions surveyed their member organisations. A number of coalitions consulted their members by individual surveys or consultations. Results: A survey of 157 organisations from 56 countries found that 57% experienced an average increase of 44% in patient calls and emails. 45% reported that their future viability may be under threat because of the impact of COVID-19 on income. Examples of good practice were reported where healthcare systems have acted to protect patients and cancer services. These include the introduction of COVID-free centres, separation of cancer patients from those who may have COVID-19, and the introduction of virtual and telemedicine services. Organisations have also introduced new ways of working including virtual psychological support services and app-based support groups. These best practices should form part of a global plan of action for future health crisis. Conclusions: Collaboration between patient advocacy organisations, governments and health services is needed to ensure the ground lost to the COVID-19 pandemic is regained. Action is required to restore cancer services safely and effectively without delay. Additional resources for organisations that support cancer patients are required to ensure that they continue to provide vital services. Finally, a global plan of action for cancer is required to meet the challenges of any future health crisis.