A new England-wide survey on quality of life after cancer


Year:

Session type:

Charlotte Judge1, Clare Frobisher1, Carolynn Gildea1, Roger Hill1, Kerry Hibberd2, Lucinda Phillips2, Daniel Ratchford2, Val Shilling3, Gillian Rosenberg3, Alice Simon3, Simon Rogers4
1Public Health England, 2Other, 3NHS England, 4Edge Hill University

Abstract

Background

Background

There is a growing appreciation of the importance of quality of life (QoL) alongside survival of cancer. The 2019 NHS Long Term Plan highlights the need to: “Introduce an innovative QoL metric to track and respond to the long-term impact of cancer”. A cancer QoL Survey has been jointly initiated by NHS England and NHS Improvement, and Public Health England, with Quality Health managing survey invites and responses (http://www.cancerqol.england.nhs.uk/index.html).

This presentation will describe the cancer QoL Survey to-date: including invite/responder numbers; and examples from the created dashboard.


Method

Methods

Patients (≥16 years old) are identified 18 months post-diagnosis from the National Cancer Registration Dataset in England. Each month, newly eligible patients are invited to complete the survey online, with a reminder and paper copy sent 3 weeks later. The survey uses the validated EQ-5D 5L and EORTC QLQ-C30 QoL instruments.

From September 2020, the QoL survey was piloted for 10% of breast, colorectal and prostate cancer cases, expanding to all diagnosed cases for these cancers from December 2020.

Results

Results

Invite and responder numbers to May 2021:

Months

Invite/responder numbers (response rate (%)) for:

Breast

Colorectal

Prostate

Total

Pilot (Sep 20 - Nov 20)

787/349 (44%)

445/228 (51%)

1,088/591 (54%)

2,320/1,168 (50%)

Full (Dec 20 - April 21)

16,498/8,350 (51%)

8,729/4,555 (52%)

14,820/8,424 (57%)

40,047/21,329 (53%)

Total

17,285/8,699 (50%)

9,174/4,783 (52%)

15,908/9,015 (57%)

42,367/22,497 (53%)

 

The QoL data will be presented in a public-facing dashboard from Autumn 2021. The dashboard will allow comparisons of survey responses to general population data and filtering by cancer site and geography. QoL comparisons by population sub-groups will be also possible e.g. age and sex. It is predicted that 215,000 people will be surveyed per year, once expanded to all malignant cancer sites from October 2021.

The project is testing approaches for sharing a survey summary with each patient and their GP.  

Conclusion


Impact statement

Conclusion and Impact

This survey will be the first to give detailed, continuous data on the impact of cancer on QoL and will help to empower patients and GPs to address symptoms impacting on QoL, and also to inform research and the improvement of cancer services.