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Cancer Quality of Life Survey

9th December 2020

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

Watch Dr Alison Birtle and Dr Syed Mehdi's videos

Video Transcript

DR ALISON BIRTLE:

Hello, I'm Alison Birtle and I'm an Oncologist based at the Rosemere Cancer Centre at Lancashire Teaching Hospitals Trust in Preston.

It's really important as clinicians and healthcare professionals that we know about patients who've been treated for cancer, about their long-term quality of life, and this is because cancer really, now, we've got so many different treatments for many patients that we can do, to try and keep their quality of life as good as possible, for as long as possible, and that means that cancer often becomes a bit like a chronic other illness, a bit like arthritis or diabetes, because we can try and keep people as well as possible for a long period of time.

But, the problem is when people come to clinics, sometimes we don't always ask the right questions, and that's why it's very important to me to know the results from the cancer survey looking at quality of life, and this is going out at the moment, and it would be so important to me to learn from my patients what matters to them on a daily basis, what changes their life from one day to the next, and that's why it's really important to try and complete this survey.

 

Video Transcript

DR SYED MEHDI: 

Hello, my name is Dr Syed Mehdi. I'm the Chest Consultant and Lung Cancer Lead at Lancashire Teaching Hospitals NHS Trust.

Today, I'm going to briefly talk to you about being able to maintain and improve a good quality of life for our cancer patients. The way I look at it is, there are various phases during which we need to try and maintain a good quality of life for our patients.

One of the important phases that we see as Chest Consultants is pre-diagnosis and post-treatment. During the diagnostic stage, it is important to maintain a good quality of life but also, be able to manage their symptoms to get to the diagnosis and be given treatments thereafter. Once they have had the treatments such as surgical treatment or chemotherapy, or radiotherapy treatments, it also becomes important to be able to maintain their quality of life, but also to be able to address the symptoms as they come along.

We do a holistic needs assessment, but we also try and optimise their chest condition, and to be honest, their medical condition, so we can give them a decent quality of life, and also be able to control any symptoms that come during this journey. What is very clear, is quality of life matters most to our patients, and therefore it is our role to ensure that we help our patients in this aspect.

I would strongly encourage everyone to participate in the Cancer Quality of Life Survey to improve our pathways, but also for us to be able to give better care for our patients. Thank you.