This article is sponsored by Ipsen UK

The challenges and opportunities for kidney cancer care recovery

Kidney cancer care is rapidly approaching a tipping point in the UK. Despite being one of the 12 most common cancers in the UK, kidney cancer is the only one without dedicated guidelines and recommendations from the National Institute of Clinical Excellence (NICE). Instead, kidney cancer falls under the umbrella of urological cancer guidance, which is currently outdated by almost two decades.

In fact, according to Siew-Kwan Chang, Ipsen UK’s Oncology Business Unit Head, the pressures of COVID-19 only exacerbated existing issues, exposing problems caused by the lack of dedicated guidance, gaps in data collection, a lack of holistic treatment pathways, insufficient investment, and the need for patient organisations providing psychosocial support for patients.

“Every day, 13 people die from kidney cancer” he explains. “The survival rate is not good – only around half of people diagnosed will survive their disease for five years or more.”i

“In the UK, there is no holistic way of treating kidney cancer, and the guidelines are 20 years out of date.ii Despite ongoing efforts to improve kidney cancer care, we still fall far short of where we need to be and in order to make the change that is needed, the disease must be made a priority as a matter of urgency.”

Ensuring that kidney cancer does not become the forgotten ‘C’ in post-pandemic recovery efforts is critical. And so, to evaluate the impact of COVID-19 on kidney cancer patients and explore opportunities to improve upon pre-pandemic care, Ipsen UK, in collaboration with Kidney Cancer UK, Queen’s University Belfast and DATA-CAN, facilitated a roundtable of clinical experts and healthcare professionals. Using insight garnered from the roundtable report: The Challenges and Opportunities for Kidney Cancer Care Recovery, Ipsen has developed 11 recommendations to improve outcomes for patients, tackle the backlog, and provide high-quality kidney cancer care.

Understanding barriers to kidney cancer care recovery

While it is undoubtedly true that the arrival of COVID-19 significantly impacted research and treatment across oncology, concerns about perceived shortfalls in kidney cancer care emerged well before the pandemic first appeared on the radar of healthcare.

Approximately 46,000 people are living with some form of kidney cancer in the UK,i with an estimated 13,300 new cases diagnosed each year.iii

However, for many patients, accessing a definitive diagnosis is a lengthy and arduous process. In fact, according to Kidney Cancer UK, around 42% of patients received a late-stage diagnosis (stage 3 or 4), putting patients and their caregivers at a significant disadvantage in the fight to treat the disease.i

These alarming statistics directly challenge the NHS England faster diagnosis standard, which states that patients should not wait longer more than 28 days from referral to diagnosis.

“The NHS has a 28-day target from referral to diagnosis,”iv says Chang. “But 64% actually waited more than 28 days to get diagnosed, and 40% of those waited over three months.”i

Delays in diagnosis and treatment are key contributors to the low-survival rate of kidney cancer. Approximately one in every 35 deaths from cancer in the UK is due to kidney cancer, and the nation has one of the worst five-year survival rates in Europe.i

Ipsen recognises that this needs to change. As the UK works to resume pre-COVID oncology operations, it is vital to ensure that gaps in kidney cancer are addressed, starting with updating NICE guidelines.

Building back better: looking beyond the status quo

Over the past three years, the perfect storm of COVID-19, lockdowns and healthcare service delays have taken a toll on the mental health of cancer patients, their families, and their carers. According to the report, Kidney Cancer UK witnessed an 80% increase in calls to their careline, with people seeking more information about how COVID-19 will impact their condition or care.v

“For Ipsen, cancer and mental health are equally important,” says Chang. “Patients need to have someone to talk to, to comfort them and reassure them that their cancers are well taken care of. That’s the number one learning from COVID.”

Using digital tools to expand the range of services available to patients would be beneficial in addressing mental health concerns. Participants also noted an uptake in digital tools throughout the pandemic, with remote consultations extending the methods of communication between patients and practitioners as physical consultations halted.

In addition to addressing mental health concerns, the data collected through digital tools provides researchers with critical information about the success and efficiency of treatments, which can be used to shape future kidney cancer and mental health services.

“Data can provide an objective picture of how well services are performing, not only in terms of outcomes but also as measures of process,” says Chang. “The former tells us how well the total service is performing, but process measures provide vital information that tells us if a service can be improved, where it can be improved and to a great extent, how improvements can be made.”

A call to action for kidney cancer guidance

The need to define ‘good’ in modern kidney cancer care is perhaps most evident in the report’s call to action for NICE to develop tailored recommendations to guide the organisation of healthcare services for people with kidney cancer.

There is a good reason why this has become a focal point in rebuilding cancer care post-pandemic. Despite being the seventh most common form of cancer in the UK, with the lowest five-year survival rates across Europe, NICE guidance for how to diagnose and manage the disease is relegated to a four-page subset under the umbrella of urological cancer guidelines, published in 2002. While other cancer types included in the 2002 guidance, such as bladder cancer, have since been allocated comprehensive recommendations tailored to their specifications, NICE has yet to develop specific guidelines for kidney cancer care.

“The current guidelines are 20 years out of date,”ii explains Chang. “Kidney cancer is viewed as one of many cancers that oncologists need to manage, but we’re not giving fair attention to kidney cancer alone.”

He continues: “Within cancer as a whole, trying to approach all types with a one-size-fits-all approach can also cause variations in service quality. Whilst there are certain similarities across all cancers and the underlying causes are basically the same, each type of cancer should be regarded as a separate condition.”

From the responses detailed in the Ipsen-sponsored report, it is evident that the lack of relevant, up-to-date guidelines for kidney cancer care creates unnecessary barriers for both patients and clinicians working to combat the disease. As a result, significant unwarranted variations are present along the entire patient pathway in kidney cancer carev. This was further supported by the Kidney Cancer UK Accord, published in June 2022, which analysed the performance of kidney cancer services in the UK before the disruption of COVID-19.vi

Results from the audit reflected the roundtable, with late diagnosis, variations in adherence to treatment pathways, and inconsistent regularity of check-ups after surgery highlighted as prominent issues caused by a lack of uniform guidelines.vi

Improving the treatment landscape

As illustrated in both the Kidney Cancer UK Accord and Ipsen’s roundtable report, it is evident that the current landscape of kidney cancer care is in dire need of updated guidance and protocols if clinicians and patients in the UK stand a chance of achieving higher survival rates.

The report was well received by key industry figures, including Malcolm Packer, head of Charity Affairs and Communication at Kidney Cancer UK who stated: “Kidney Cancer UK welcomes this important report as it highlights the impact of COVID-19 on patients and services in the UK, including a diagnosis backlog, and lower rates of early-stage treatment. This in turn is causing the discovery of the disease to happen more often at its life-threatening, late stage. I would urge anyone showing symptoms – blood in urine, pain in your back/flank, or extreme fatigue – to contact their GP without delay.”

With this call to action, it is hoped that NICE will extend kidney cancer the same individual guidance and recommendations they have provided for every other common form of cancer in the UK, giving clinicians the correct tools and pathways needed to effectively navigate the treatment environment. But as Chang highlights, driving policy change is only part of the puzzle. Every stakeholder across kidney cancer care must come together to help improve the treatment landscape for future generations.

“Upgrading the guidelines is the minimum that we need to do,” he explains. “But the report is evidence that we are bringing people of a common interest together. Everybody is motivated with the same agenda: patient organisations, the NHS, and Cancer Alliance, we all have a role to play.”

For more information, visit: www.kcuk.org.uk

i Kidney Cancer UK 2021 Patient Survey Report. Available: https://www.kcuk.org.uk/booklets/KCUK-patient-survey-2021/#page=2 Accessed: June 2022
ii NICE. Improving outcomes in urological cancers. Available at: https://www.nice.org.uk/guidance/csg2 Accessed: June 2022
iii Cancer Research UK. Kidney Cancer – incidence. Available at: https://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/kidney-cancer/incidence Accessed: June 2022
iv NHS. Cancer – faster diagnosis. Available at: https://www.england.nhs.uk/cancer/faster-diagnosis/#:~:text=The%20Faster%20Diagnosis%20Standard%20(FDS,cancer%20have%20a%20timely%20diagnosis Accessed: June 2022
v Kidney Cancer UK, Ipsen UK, DATA-CAN, Queen’s University Belfast. The Challenges and Opportunities for Kidney Cancer Care Recovery. 2022.
vi Kidney Cancer UK Accord. Available: https://kcuk.org.uk/booklets/patient-consensus-2022/#page=1 Accessed: June 2022

July 2022
DR-GB-000184

About the author

Siew-Kwan

Siew-Kwan Chang is the Oncology Business Unit Head at Ipsen UK. He has over 20 years’ experience working within the pharmaceutical industry and started his career with Ipsen in 2004, working in Asia and Europe in both strategic and operational roles across global functions and local affiliates. Before entering the pharmaceutical industry, Siew-Kwan studied Pharmacy at Universiti Sains Malaysia.

About Ipsen

Our team in the UK is a core part of Ipsen’s global biopharmaceutical business and is driven by the belief that patients don’t have time to wait. We have a biotech mindset coupled with pharmaceutical capabilities and have invested in a robust business presence in the UK that spans the early stages of R&D (Abingdon, Oxford) through to in-house manufacturing (Wrexham, Wales) so we can effectively deliver on our promise to UK patients. As part of this investment in the heart of UK life sciences, we employ over 700 people across our three major UK sites, including our commercial headquarters in Bath Road, Slough.

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