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Study will measure public’s preference for different health states.

Rosie Lovett and Sophie Cooper, NICE Science policy and research programme

Experts have recommended NICE should support a new study of how to value health-related quality of life in England.

Internationally recognised professionals have told NICE they believe that collecting new data is the best way to resolve concerns about the recently developed EQ-5D-5L value set for England.

What is a value set and why does it matter?

The way NICE measures and values health-related quality of life has been under discussion for some time. We usually use the EQ‑5D questionnaire developed by EuroQol, a registered non-profit foundation. The questionnaire responses are converted into a number that reflects the views of the public about which aspects of health matter the most. The conversion uses the results of a valuation study, known as a value set. This information is used to inform many of NICE’s decisions about whether treatments provide good value for money.

Valuation studies are technically difficult and the study for England has been controversial. Having a high-quality value set is vitally important to ensure that NICE’s guidance properly represents the preferences of the public in England.

What do 3L and 5L mean?

For many years there has only been one version of the EQ-5D questionnaire - EQ‑5D‑3L. The final part – the 3L in this case – is the number of multiple-choice response options each question has.

For example:

Please tick ONE box that best describes your health TODAY:

Pain/Discomfort

• I have no pain or discomfort                                 
• I have moderate pain or discomfort
• I have extreme pain or discomfort

Extract from EQ-5D-3L, © With permission of EuroQol Research Foundation.

A newer questionnaire created by the EuroQol Group has five multiple-choice options – EQ‑5D‑5L. So for the question on pain and discomfort people can choose from five response options.

For example:

Please tick ONE box that best describes your health TODAY:

Pain/Discomfort

• I have no pain or discomfort        
• I have slight pain or discomfort        
• I have moderate pain or discomfort
• I have severe pain or discomfort
• I have extreme pain or discomfort

Extract from EQ-5D-5L, © With permission of EuroQol Research Foundation.

The new questionnaire is designed to give more nuanced information about people’s health.

What is the issue with the value set for England?

In 2018 researchers published an EQ-5D-5L value set for England after interviewing around 1000 members of the general public. But independent quality assurance and reports from four independent experts raised concerns about the quality and reliability of the data collected in the valuation study, and the methods used to model these data. Accordingly, NICE has chosen not to use the EQ-5D-5L value set for England. The English study was one of the first to be carried out anywhere in the world, and since then the international standard valuation study protocol has been improved and additional quality control methods introduced.

What will happen next?

NICE has now agreed with the Department of Health and Social Care and NHS England that a new EQ-5D-5L valuation study for England should be undertaken, which will be funded by EuroQol.

All three stakeholders (NICE, the Department of Health and Social Care and NHS England) will advise on the further work being undertaken by EuroQol. But academic experts will make the key methodological decisions when designing and conducting the new study.

It will involve researchers interviewing the public using the international standard protocol which has been used in at least seventeen countries. The data collection and analysis are expected to be completed by the middle of 2021.

In the meantime, NICE continues to use the EQ-5D-3L valuation set. Our position statement contains full guidance for companies submitting evidence to NICE. The expert evaluation reports are now available on the NICE website.