Published on: 10 December 2020

Public Health England, NHS England and NHS Improvement have launched a nationwide Cancer Quality of Life Survey to help understand what matters to patients.

All patients diagnosed with breast, prostate or colorectal cancer in England will now be invited to complete the survey 18-months after their diagnosis and people with other cancer types will be included from July 2021 onwards.

The information collected from the survey will help the NHS 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 around 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, the survey will routinely measure outcomes in a way that influences health policy, professional practice and patient empowerment.

An experienced patient survey company (Quality Health) is managing the survey invite and response system and all the survey responses are being held securely by the Cancer Registry at Public Health England.

The Cancer Registry are linking the survey responses with existing data related to each person’s diagnosis and treatment. Eligible patients will receive a direct invitation to complete the survey online.

The survey is easy to complete and generally takes between five and 10 minutes and asks about how people are doing in their day-to-day lives.

Answers can be related to their cancer diagnosis and treatment, other illnesses, or other things happening in their life. Quality Health is managing the website and a free helpline (0800 783 1775) to support patients to complete the survey and respond to any queries or difficulties.

The results will be analysed by Public Health England and it is anticipated that national and regional level reports will start to be made available in the Autumn of 2021. The NHS will also be testing the provision of individual summary reports to patients and their clinicians, prior to a decision on implementing these in 2021.

Preliminary analyses from 2,703 people who completed the Survey during the 2018-19 pilots indicated that quality of life outcomes are likely to vary by stage of disease, cancer type, gender, age and levels of deprivation. Compared to a ‘general’ (non-cancer) population, cancer patients may be more likely to report issues with anxiety and difficulty engaging in their ‘usual activities’ (for example, at work, when studying, around the house, during leisure activities or when doing things with their family).

You can learn more about the survey and complete the survey here.

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