‘Britain’s Cancer Crisis’, which aired on BBC One in early July, followed the stories of several people living with cancer during the pandemic. The show highlights the shocking and horrific reality of how the pandemic is affecting people with cancer across the UK, with delayed diagnoses and cancelled treatment potentially causing anywhere between 7,000 and 18,000 additional deaths from the disease in the most likely scenario over the coming year.
These figures sound extremely worrying, but that’s quite a big bracket. So how exactly were they calculated?
To investigate the knock-on effect of COVID-19 on cancer care, Dr Alvina Lai – Lecturer in Health Data Analytics at UCL and Health Data Research UK associated researcher – and her collaborators at UCL and DATA-CAN securely accessed anonymized population-based electronic health records of cancer patients from the Clinical Practice Research Datalink, analysed using the open-access CALIBER resource, and real time hospital data about cancer services through the UK Health Data Research Hub for Cancer, DATA-CAN.
These datasets allowed them to track changes in cancer referrals and chemotherapy admissions across the UK as a result of the pandemic, and estimate the risk of death for people with cancer during the pandemic according to their type of cancer and the number of underlying health conditions. They then used their background death risk to predict the number of excess deaths we can expect to see in patients with cancer.
Alvina and her team predicted there could be between 7,000 and 18,000 additional deaths in cancer patients over the next 12 months, caused by direct and indirect effects of the coronavirus pandemic. A pre-print detailing the results of their analysis was published in April.
“Excess deaths refers to the number of deaths occurring above what we usually expect to see under usual conditions. In the context of COVID-19, direct excess deaths are deaths caused by the COVID-19 infection itself. But indirect excess deaths are caused by indirect effects such as changes in health services during the pandemic,” explains Alvina.
When lockdown started, we were told to protect the NHS and stay home to save lives. The public took this message seriously, and as a result, fewer people went to their GP with potential cancer symptoms.
“We saw a significant decline in urgent referrals for early cancer diagnosis of up to 80%,” Alvina says.
For Dr Jo Long, a research fellow from Birmingham who was diagnosed with breast cancer in June, the data echoes her personal experience.
“I found a lump, and I didn’t think it would be safe to go to my GP. I didn’t want to put other people at risk,” she says. “I’d been really strict about the lockdown, so I didn’t want to go to a hospital or my GP surgery. I waited for a few weeks to see if it went away, but it didn’t.”
Jo eventually contacted her GP and was quickly referred to the breast clinic, where she was diagnosed with breast cancer and is now undergoing treatment.
Early diagnosis is often vital for people with cancer, as early detection can improve their long-term chances of beating the disease.
“Since we published our work in April, the NHS has released guidance urging the public to seek help for cancer symptoms,” says Alvina. “From our data, we can see that urgent refers for cancer diagnosis have gone up since we published our study.”
But the impact of the pandemic on cancer patients goes beyond delayed diagnosis. The data analysed by Alvina and her colleagues also showed that chemotherapy attendances declined by up to 60% during April when cancer treatment was delayed as a result of the pandemic.
For Kelly Smith, a 31-year-old mum living with bowel cancer who was featured in the panorama episode, the decision to pause treatment during lockdown was a deadly one. Sadly, her cancer progressed and she died on the 13th of June 2020 as an indirect casualty of the pandemic.
“The reduction in chemotherapy appointments could be considered as the NHS’s response to the pandemic,” Alvina explains. “Doctors were deployed to the frontline and, as a result, chemo treatments were postponed to mitigate capacity issues or to minimise risk of severe COVID-19 infection as some chemotherapy may weaken the immune system.
“The NHS tried to prioritize the resources for the patients who need them the most. But deciding who will get their cancer treatment when capacity is limited is very difficult. It’s akin to deciding which COVID-19 patients will get a ventilator when we don’t have enough.”
Importantly, the study highlights that the direct and indirect risks posed by COVID-19 to people with cancer differ based on their type of cancer, and any other underlying health conditions.
Alvina and her colleagues hope that their work will help the NHS to better understand the situation across the UK and effectively prioritise tests and treatments for those most at risk as the effects of the pandemic continue over the months to come.
“While we are seeing a recovery, just getting back to normal isn’t good enough” said Prof Mark Lawler, Scientific Lead of DATA-CAN and a joint senior author on the study.
“The data now suggest that we need to be operating at 130% of pre COVID-19 levels, in order to address the backlog, the missing diagnoses and the delayed treatments. Otherwise, we risk adding the lost lives of patients with cancer to the COVID-19 death toll.”
“The numbers are very scary,” Jo adds. “I’m very grateful that so far, I’ve been very well looked after. But right now seems like a really bad time to have cancer.”
For more information about cancer and COVID-19, please visit the Cancer Research UK website.
- Britain’s Cancer Crisis– Panorama
- Cancer is the other ‘big C’ we can’t afford to push aside– The Independent
- Coronavirus could cause 35,000 extra UK cancer deaths, experts warn– BBC News
- New Research highlights risk of 18,000 extra deaths in people with cancer due to the COVID-19 Crisis– HDRUK
- Estimating excess mortality in people with cancer and multimorbidity in the COVID-19 emergency– Lai et al (2020) MedRxiv
CO-CONNECT: A layperson’s perspective on using health data, building trust and the benefits of sharing
18 January 2022
Karen Mooney, one of the Public and Patient Involvement team members for the CO-CONNECT project, guest-blogs on how getting closer to data has shifted her perspective.