Latest results from the Under 16 Cancer Patient Experience Survey

The Under 16 Cancer Patient Experience Survey (U16 CPES) 2022 is the third iteration of an annual national survey to measure children’s cancer and tumour care provided by the NHS in England.

The survey was developed to better understand children and young people’s experience of cancer, which is one of our NHS Long Term Plan commitments. The questions were designed with parents and carers of children with cancer, children with cancer, NHS staff, charities, and other experts.

The 2022 survey was carried out by Picker Institute Europe on behalf of NHS England. The survey captures the experiences of children who were aged 8 and above at the start of the fieldwork period, but under 16 at the time of their care or discharge, and the parents and carers of children who were aged under 16 at the time of their care or discharge.

See the full results here: https://www.under16cancerexperiencesurvey.co.uk/technical-reports

Summary of the results

• 885 patients and parents/carers participated nationally, out of a total of 3,569 eligible parents and children who were sent a survey – a response rate of 25%.
• This is compared to a response rate of 26% for the 2021 survey. A response consists of one survey completion for a single patient, which could consist of both parent and child responses.
• 75% of children aged 8-15 reported that they were looked after very well for their cancer or tumour by healthcare staff, compared to 77% in 2021. Across the survey types, this was 74% of children aged 8-11 and 76% of children aged 12-15.
• 89% of parents/carers rated the overall experience of their child's care as 8 or more out of 10 compared to 89% in 2021.

What happens next?

We are proud to be the first country in the world to carry out an annual survey of child and teenage cancer patients – it is so important for us to listen and learn from them and their parents to provide them with the best possible care and experience throughout treatment and to reduce the impact it has on them later in life.

The results of the survey look at the positive experiences patients are having that we can build on, where improvements can be made and how the insights can be used to change policy and practice. The results show the consistently extremely high level of care young cancer patients are receiving, and cancer care providers will analyse these results in detail to learn where they could do even better.

A diagnosis of childhood cancer understandably has a devastating impact on the emotional health and wellbeing of the child and their family, both during and after treatment.

Children and young people’s treatment and experience of cancer differs greatly from adults and we recognise the need for a personalised approach to their cancer care.

While celebrating the excellent level of care this survey’s results confirm, there are areas where we can learn and do more. Principal Treatment Centres can look at their individual reports for areas that are working well and potential areas to improve: https://www.under16cancerexperiencesurvey.co.uk/technical-reports