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Cancer Quality of Life Survey

29 January 2021

The Cancer Quality of Life Survey is a national survey run by NHS England and NHS Improvement and Public Health England. The survey is for people in England who have been diagnosed with cancer. 

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. Public Health England (opens in new window) and NHS England and NHS Improvement (opens in new window) have launched a nationwide Cancer Quality of Life Survey to help us understand what matters to patients.

We are pleased to confirm that, from December 2020, all patients diagnosed with breast, prostate or colorectal cancer in England will be invited to complete the survey 18-months after their diagnosis. People with other cancer types will be included from July 2021 onwards.

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 about the Cancer Quality of Life Survey 

  • An experienced patient survey company (Quality Health) is managing the survey invite and response system. 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 QoL survey online. The survey is easy to complete and generally takes between five and ten minutes. The survey asks about how people are doing. People’s answers can be related to their cancer diagnosis and treatment, other illnesses, or other things happening in their life. The survey company (Quality Health) is managing the Cancer Quality of Life Survey website (opens in new window) and 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. We anticipate that national and regional level reports will start to be made available in the Autumn of 2021. We will also be testing the provision of individual summary reports to patients and their clinicians, prior to a decision on implementing these in 2021. 
  • The results from the survey will be analysed and published by Public Health England. We anticipate that national and regional-level reports will start to be made available in the Autumn of 2021 through our public-facing Cancer Data website (opens in new window)
  • All researchers can make requests to obtain and analyse the anonymised dataset through requests to the Cancer Registry’s Office for Data Release (opens in new window). We will also be testing the use of individual summary reports that can be given directly to patients and their clinicians, prior to a decision on implementing these in 2021. 
  • 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 QoL outcomes. 
  • Preliminary analyses from 2,703 people who completed the survey during the 2018-19 pilots indicated that: QoL 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). 

Find out more about Cancer Quality of Life