We are delighted to present the findings of all four of our Covid-19 kidney cancer patients surveys in one document.
The 4th Covid-19 survey was included as part of our annual 2020 Kidney Cancer Patient Survey and did not include all questions in the previous Covid 19 surveys. Click the image below to open or download a PowerPoint PDF of the results.
Our first Two Surveys and comments:
A recent snapshot survey conducted by Kidney Cancer UK on the impact of COVID-19 to kidney cancer patients has revealed that only a tiny percentage of patients classed as vulnerable to the pandemic have been tested.
Just 4 in 95 patients who took part in the survey had been tested and 50% of those who took part identified themselves as officially in the vulnerable group. Leading lights in oncology have called for clearer messaging to patients on the risk of contracting the disease and for
cancer patients in general to be offered home testing without delay.
Over two separate surveys- 3rd to 9th April and the second from 20th to 28th April- the charity asked the same questions to gauge any change in replies. The results highlighted how the risk of COVID-19 is adding to the anxiety of patients with kidney cancer with nearly 41% being anxious or very anxious about COVID-19, which is almost as high as in early April (45%). This is similar to the proportion (40%) who are anxious or very anxious about their kidney cancer while over a third (39%) believe they are at high risk of COVID-19.
Many patients remain unclear on basic information such as to whether or not they are in a high-risk group as 50% had not been informed if they were in the high-risk group. Of the those who had been informed, fewer than 1 in 6 had been informed by telephone, giving them little or no opportunity to discuss their concerns with their healthcare professional. The majority were told by email, text or letter.
Access to information on kidney cancer care during the COVID-19 pandemic is essential so that patients know how to make the right choices for their treatment, whilst minimising their risk of exposure to COVID-19. Kidney cancer patients receiving systemic treatment for kidney cancer appear to be relatively well informed. Of those receiving infusions, only 4% said they were unsure if they would be willing to skip an infusion if asked to do so due to COVID-19 and 10% said their treatment has already been paused. Only 10% said they did not know if they would be willing to pause their systemic treatment, with just under 9% saying their treatment had already been paused. The majority (73%) said they would still want to have their scans as booked. This suggests that most patients on systemic treatment are clear on their options and are managing their treatment in partnership with their health team.
Only 56% said they would be happy to attend appointments where they are still in place. Kidney cancer centres are working hard to offer alternatives to face-to-face appointments and the situation is improving, but 1 in 5 (19%) patients said their health team had not set up or offered an alternative to face-to-face appointments.
The lack of information on COVID-19 specifically geared to the needs of kidney cancer patients is adversely affecting the potential uptake of surgery for kidney cancer. Of those waiting for a date for surgery, a large proportion (40%) said they are not sure if they would still have the surgery if a date was offered, yet fewer than 4% report having had surgery cancelled due to COVID-19
Kidney Cancer UK are stating that patients need extra support and information at this very worrying time and expert clinicians and clinical specialist nurses are best placed to provide this. Their capacity to provide support must be preserved if we are to avoid mortality rates from kidney cancer spiralling higher when the UK already has some of the highest rates in Europe.
In addition to preserving their capacity so that they are able to advise kidney cancer patients, clinicians and clinical specialist nurses must be able to signpost patients to existing authoritative information on all aspects of kidney cancer such as that provided by Kidney Cancer UK and the wider UK charities to help ease the burden on the NHS.
Alongside its monumental work on COVID-19, we are calling on the NHS to ensure that vital care and support for kidney cancer patients is not overlooked and is maintained for the protection of patients.
Professor Thomas Powles MBBS, MRCP, MD, Professor of Genitourinary Oncology, Director, Bart’s Cancer Centre said; “Patients are anxious, and their treatment has often been interrupted, including delays in surgery. Many have switched to telephone consultations and only 4 in 95 have been offered a COVID-19 test. Many kidney cancer patients have not been informed well about their risk to the disease and their risk level needs to be communicated clearer.
It is important that we communicate plans clearly with patients moving forward as we enter the chronic phase of this pandemic. Delaying or cancelling treatments will adversely affect outcomes. Constant discussions about risk and benefit need to occur and if we decide not to treat now, then when?”
Miss Maxine Tran MBBS BSc(Hons) MRCS FRCS (Urol) PhD, Senior lecturer in renal cancer surgery and honorary consultant urological surgeon at The Royal Free London, said; “This is an important survey which has geographical representation of kidney cancer patients throughout the UK. For me, there are three key messages: first, although patients are concerned about COVID-19 they are equally anxious about their cancers; second, despite this concern, only 16 % would not have surgery if offered for their cancer, and third, the majority of patients would still attend for their scans and clinic appointments in this current climate. These are strong indicators that provide critical insight into health priorities as defined by patients and highlight that urgent cancer care must continue, despite the challenges of COVID-19.
Berkeley Greenwood, Chairman of Kidney Cancer UK said: “It is deeply worrying to see the high percentage of patients not in the shielded group who felt they should be. Of deeper concern is that, of the 95 patients asked if they had been tested for COVID-19, only 4 had been. We have to ask the question, ‘are patients being screened and categorised appropriately and are they being kept well enough informed about their risk level to COVID-19?’ At the least, for the 50% of those not in the shielded group but who believe they should be, this is clearly not the case and we call for this to be addressed.’
Andrea Mulligan who is living beyond kidney cancer, highlighted the mental health issues of lockdown. She said: “It’s hard being in lockdown all alone, day after day not seeing anyone, no hugs or kisses and missing my nearest and dearest. My mental health was suffering before this pandemic and it’s taken a beating, but it’s important for all of us to keep safe and well. I beat kidney cancer and didn’t come this far to end up with COVID-19 so, staying at home and self isolation is the only, and best option.”
Click the images below to open a downloadable PDF version of Survey 1 and Survey 2 the reports.