Quality of life means different things to different people, but it matters to everyone. More people are surviving cancer than ever before – but living with cancer, and the effects of its treatment, can have a negative impact on people’s physical, emotional and social wellbeing.
NHS England and NHS Improvement and NHS Digital have launched a nationwide Cancer Quality of Life Survey to help us understand what matters to patients.
The survey was launched in September 2020 for a small pilot of breast, prostate and colorectal cancer patients, and has since been rolled out to all patients diagnosed with breast, prostate or colorectal cancer in England around 18 months after their diagnosis.
All cancer patients will be invited to complete the survey from October 2021. The information collected from the survey will help us to work out how best to support people living with and beyond cancer.
This is an ambitious programme with a scale and depth that isn’t being matched anywhere else in the world. Although patient-reported outcome measures (PROMs) that focus on quality of life are in use in parts of the NHS, and in clinical trials round the world, the potential for PROMs to improve care and outcomes for people affected by cancer has not yet been realised.
Only by monitoring quality of life, using a consistent assessment point with nationwide coverage, can data be made available to help improve care across the NHS. For the first time, our survey will routinely measure quality of life outcomes in a way that influences health policy, professional practice and patient empowerment.
We want to encourage as many people as possible to complete their survey so that the information collected fully represents our cancer population.
More information about the survey can be found on the survey website: www.CancerQoL.england.nhs.uk and free helpline – 0800 783 1775 – to support patients to complete the survey and respond to any queries or difficulties.
Patients completing the survey can access their individual summary report which shows their quality of life scores with a comparison to the general population.
First results from the survey will be available on a public-facing website (www.cancerdata.nhs.uk/cancerqol) from the end of October 2021. Data will be available at national, cancer alliance and regional level.
All researchers will be able to make requests to obtain and analyse the anonymised dataset through requests to the Cancer Registry’s Office for Data Release.
Information from the QoL survey will be used to understand where changes in care are needed.
For example, depending on the results of the survey, we may want to improve psychosocial care that alleviates anxiety, or provide additional services to increase mobility, or target resources towards different patient groups or geographical areas that are at risk for poorer quality of life outcomes.
The first results of the survey show that although patients reported relatively high quality of life, it is still slightly lower than the general population. We are looking at how we can close this gap.The results demonstrate some variation between cancer alliances and different cancer types and can enable local systems to act on the data as appropriate.