Cancer Patient Organizations Critically Affected by COVID-19

Pam Harrison

July 15, 2020

Editor's note: Find the latest COVID-19 news and guidance in Medscape's Coronavirus Resource Center.

The COVID-19 pandemic has disrupted every aspect of cancer care, from diagnosis, treatment, and follow-up to participation in clinical trials, says a new report that collected responses from cancer patient organizations around the world. It surveyed 157 organizations from 56 countries, representing some 350,000 patients with cancer.

"The COVID-19 global pandemic has quite literally wreaked havoc with all of our lives but especially for cancer patients," said the report's author, Frances Reid, MBA, program director, World Ovarian Cancer Coalition.

"To those who have the power or influence to ensure that cancer treatment and services are not set back several years, please listen to those organizations who can articulate clearly the impact on patients, work with them, and act on it as soon as you can," she added.

The new report, entitled The Impact of COVID-19 on Cancer Patient Organisations, was released on June 12. The organizations were surveyed from May 11 to May 25.

Cancer Diagnosis

Two thirds of the organizations that were surveyed said cancer screening programs had been canceled in their country, and 59% indicated they had seen a drop in urgent referrals for suspected cancer.

Some 44% said that access to pathology services had been reduced. One group in Australia reported that "results of pathology tests are taking longer to be returned. Generally a result would be returned within 48 hours. Since COVID-19, results are taking up to 7 days to be returned."

As for treatment, 68% of organizations reported delays or cancellations of surgery or other treatments; 58% reported there had been a need to modify treatment protocols; and 48% indicated there had been a drop in participation in clinical trials.

Respondents were also concerned about reported increases in stress, anxiety, and isolation among many cancer patients. "Often at increased risk of infection and serious illness themselves...many have been required to 'shield' from others, totally withdrawing from life outside their homes, thus increasing the already high levels of isolation they feel because of their life-limiting conditions," the report notes.

In addition, some 60% of the organizations said that the pandemic had increased financial hardship among cancer patients. One US group commented: "Unemployment levels in the States similar to depression era. This has been a real challenge as many have lost insurance as well as jobs."

Only a minority of respondents reported that cancer care was being offered in hospitals with no special arrangements in place to treat concomitant COVID-19 patients.

On the other hand, only 15% of respondents indicated that patients were being treated in a hospital that was not also caring for COVID-19 patients.

"Cancer will not wait for COVID-19 to pass, if it ever will, and the patient organizations are the key to minimizing the devastating impact [COVID-19 is having] on people with cancer," Reid emphasized.

"More than ever, the patient/support services should be strengthened," commented a group from France.

Patient Services Affected

"Almost all organisations (89%) have had to alter their services for people with cancer," the report notes.

Two thirds of organizations involved in professional educational activities have had to change their services in some way, either by moving them online or stopping programs altogether, at least temporarily. "Some found that doctors and nurses are too busy with the pandemic to participate, and that their appetite for such activity is also diminished," the report notes.

The volume of phone calls and emails increased in almost 6 of 10 organizations that provide support services for patients. Compared to prepandemic levels, volume increased by an average of 44%.

The most common queries raised by people with cancer (accounting for 85% of all queries) were questions about the risks of contracting COVID-19 and cancer treatments during the pandemic.

Some of the organizations also commented about how they had been affected. One group from Uganda said: "We had a sudden lockdown and we could not access office to give face to face counselling. We stopped research due to national guidelines on research. We continued giving information via phone and social media especially WhatsApp. We created groups for patients and counsellors to continue interacting."

A group in Costa Rica reported: "We developed a new program of transfers from their homes to the hospital for cancer patients in chemotherapy and radiotherapy. 200 monthly transfers. We created a virtual community instead of our face-to-face support group, we started in April and we have 108 members, virtual sessions are held every two weeks."

An organization based in the United States reported that it was "totally revamping our educational programs to be delivered in new ways in an online format ― not just replicating the in-person formats, but reaching out to our community and asking them what they would find the most valuable."

Impact on Fund-Raising

Almost 9 in 10 organizations raise funds to support their activities, the report notes. "A shocking 79% of organisations say they predict a fall in income over the next 12 months, with a further 16% not sure, leaving only 5% confident of their financial stability."

Every type of fund-raising has been affected by COVID-19, from grants and major donors to community fund-raising events. Sixty percent of organisations said they were trying to find new ways to raise funds.

However, as one organization in Japan noted: "At the moment we can survive and feel it is unethical to ask the public for money when many are facing dire financial personal circumstances."

A group from Australia commented: "Fundraising has been extremely difficult due to Covid-19 with distancing laws and no group gatherings as well as the economic downturn. Crisis appeals have been unsuccessful and all outdoor events and major events have been cancelled. In Australia we have had to contend with also the fires earlier in the year where a lot of money was donated to leaving other foundations struggling to get donor support."

A little more than half (55%) of the organizations surveyed have had to cut costs.

Staffing cuts have been made in 1 in 10 of the organizations surveyed. A similar proportion of organizations have furloughed staff. Many if not all staff from numerous organizations are working from home.

A little more than half of those surveyed either provide funding for research or conduct research themselves, but only one quarter of them indicated there had been no change in their research projects. The others have indicated that they had to either reduce the scope of their research, put it on pause, or stop it altogether.

Three quarters of survey respondents noted that they had engaged in advocacy activities prior to the pandemic, and almost two thirds of them said they had to delay these activities.

Several of the organizations expressed thanks to the survey authors.

"COVID-19 is a global pandemic and cancer patients all around the world have similar worries, concerns and questions ― we are a small/medium organisation working in one country but believe in the power of community and coalitions and so this survey is a very welcome part of looking at this from a greater perspective," commented one British group.

Reid has disclosed no relevant financial relationships.

World Ovarian Cancer Coalition, et al. The Impact of COVID-19 on Cancer Patient Organisations, published online June 12, 2020. Full text

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