Covid-19 and CCA – Patient Survey Report

In the summer of 2020, Cancer521, supported by its members, conducted an online survey of people with rare and less common cancers to understand the impact on them of the Covid-19 pandemic so far, including any changes to treatment and care and their experiences of shielding.  More than 1,400 responses to the survey were received.

AMMF, a member of Cancer52, took part in the survey, both in the set up and in sharing it through its own social networks.  Twenty-seven people with cholangiocarcinoma (CCA) responded to the survey which, considering the very difficult nature of this cancer, represented a good response rate.

The full findings from the responses of those with cholangiocarcinoma, along with the original questions, are presented in the report, “Impact of Covid-19 Pandemic on people living with cholangiocarcinoma”, which can be downloaded by clicking here.

Some points from the report:

  • The ages of those with CCA ranged from 20 to 80+, with 18 of the 27 respondents being aged between 20 and 69.
  • Most people with CCA were more concerned about their cancer than Covid-19 – the reverse of the findings of the other rare and less common cancers.
  • Some were subject to treatment delays, whilst for others care continued almost as normal.
  • Some were told to shield, but worryingly others received no notification or advice as to what to do.

As the incidence rates rise again, the lack of understanding of cholangiocarcinoma by many health care professionals and the inequalities amongst patients highlighted in this report is concerning …

AMMF will share the results of this survey amongst its own networks, including patients, clinicians and policy makers, and will seek clarity on shielding requirements for people with cholangiocarcinoma.

AMMF will continue to press for wider awareness of cholangiocarcinoma, for better and more equal treatment for all those with cholangiocarcinoma independent of where they live or who they are, as well as for more research into understanding the causes of this disease and finding ways to achieve earlier diagnosis and effective treatments.

AMMF would like to thank sincerely all those with cholangiocarcinoma who took part in this important survey, and also thanks Cancer52 for conducting the survey .

The survey was undertaken anonymously, so all results are anonymous and care has been taken to remove any information that could be identifying.

To see the results of the full Cancer52 survey, click here

1Cancer52 is an alliance of nearly 100 patient support groups and organisations representing rare and less common cancers, all of whom are united by their vision of a better future for everyone affected by these challenging cancers, which account for more than half of all cancer deaths in the UK.

September 2020