Kidney Cancer Patient Survey 2021

We are delighted to be able to publish the report from our Kidney Cancer Patient Survey 2021 to highlight Kidney Cancer Awareness Week 2022.

In our 2021 patient survey involving over 100 people, we found that more than half of those diagnosed with kidney cancer (the eighth most common cancer in the UK) felt their diagnosis was delivered badly, rushed, or told in an insensitive manner, leaving them feeling confused.

The online survey of kidney cancer patients, their family and carers revealed that when the news of kidney cancer was delivered, a large portion said the sensitivity expected was not there, with one respondent writing that they were told in an open hospital ward with no family around for support. Another mentioned that the diagnosis was confirmed in a ‘disrespectful and condescending manner’ with ‘no empathy or compassion demonstrated’. One patient received their news within a four-minute appointment, and another stated they were ‘just given a leaflet’.

The survey also revealed that about a third (32%) of those surveyed visited their GP after noticing blood in their urine. Forty-two percent found out they had the disease while being treated for symptoms not related to kidney cancer, such as ongoing stomach problems, tiredness, weight loss and a general feeling of being unwell, or symptoms indicating other illness, such as kidney stones, urinary tract infection (UTI), asthma or gallstones. Almost a quarter of patients surveyed showed none of the usual signs or symptoms of kidney cancer.

Once diagnosed, nearly half of the patients (48%) felt they were given enough information about the condition and stage of their kidney cancer. The remaining 52% felt they were not, with many of those taking to the internet to find out more and discovering dedicated kidney cancer support charities, such as Kidney Cancer UK. The vast majority of patients, carers and family members (90%) carried out research after the diagnosis, but only 22% received information about support, self-help groups and specialist kidney cancer charities. Although 80% said they were satisfied with overall cancer care, mainly related to the care they received during their surgical and medical treatment, this left 20% stating they were not satisfied. Many sighted late and unsympathetically delivered diagnosis along with poor and non-existent aftercare within the comments sections of the survey.

The results from this survey reflect the findings from the National Cancer Patient Experience Survey (NCPES) from two years ago, where kidney cancer patients reported less positive experiences than other cancer patients when it came to their diagnosis, receiving understandable written information, and not being involved as much as they want to be in decisions about their care and treatment. The NCPES also showed that kidney cancer patients are less likely than other cancer patients to be given information about support or self-help groups, and less than a fifth of patients were offered a written assessment and care plan. We are working with health professionals and patients to address this issue, to improve participation of kidney cancer patients in decision-making regarding their care and treatment, and to prepare and enable patients to become active participants, rather than assuming they can take on this role without support.