Cancer Quality of Life Survey Launches

Public Health England, NHS England and NHS Improvement are leading the way in cancer care by recognising that quality of life (QoL) outcomes are as important to patients as survival and are launching a nationwide QoL survey in September 2020.

Initially they will begin surveying people who have been diagnosed with breast, prostate or colorectal cancer. People with all other cancer types will be included from 2021 onwards.

People will be a sent a survey 18 months after their diagnosis to assess their QoL. The information collected from the survey will be used to work out how best to support the growing number of 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.

Key Points

• Quality of life outcomes are important to patients living with and beyond cancer.
• Measuring people’s quality of life increases our understanding of the impact of cancer and its treatment, and how well people are living after treatment.
• The Cancer Quality of Life Survey aims to measure quality of life at scale for all cancer patients.
• The NHS is committed to raising the profile of quality of life so that it has parity with survival for cancer patients.

About the Cancer Quality of Life Survey

• People will receive a survey invitation through the post 18 months after their diagnosis.
• People will initially be encouraged to complete the survey online.  A paper-based option is also available.
• The survey takes between five and 10 minutes to complete.
• Patients will be asked to complete two widely-used quality-of-life questionnaires: the generic EQ-5D and the cancer-specific EORTC QLQ-C30.
• Patients’ survey responses are being linked with data held about them in the Cancer Registry to provide an overview of whether quality of life differs, for example, depending on age, gender, cancer type or stage at diagnosis.
• A small-scale test of providing individual reports to patients and clinicians has proved successful; wider-scale tests of providing patients with a summary report containing their own QoL scores will start in 2021.
• There is a free helpline and website to support patients and staff with any questions about the survey.
• The survey is being carried out by a centrally-run survey company (Quality Health) under direction from Public Health England, NHS England and NHS Improvement.

If you would like help completing the survey over the phone, including in other languages, large print or easy read, please contact us by calling the free helpline 0800 783 1775, send an email to helpline@quality-health.co.uk or write to FREEPOST Quality Health.