On 27 August 2026, the National Institute for Health and Care Excellence (NICE) confirmed the adoption of the EuroQoL 5-Dimension 5-Level (EQ-5D-5L) descriptive system and the new UK EQ-5D-5L value set as its preferred approaches for measuring and valuing health-related quality of life in adults. While this may appear to be a relatively technical update to NICE’s methods, it has the potential to materially affect cost-effectiveness results and, in some cases, the evidence companies need to generate to support patient access.¹

There is a strong rationale for the change. EQ-5D-5L was developed to provide greater sensitivity than the older EQ-5D-3L, giving 
patients five rather than three response levels across mobility, self-care, usual activities, pain or discomfort, and anxiety or depression. The new UK value set is also based on a much more recent valuation exercise, involving 1,200 interviews with a representative sample of adults across England, Scotland, Wales and Northern Ireland. NICE’s previous reference case ultimately relied on preferences collected in the early 1990s, so updating the framework is a logical step.²⁻⁴

However, NICE’s own analysis also shows that this is not a neutral methodological change. The impact varies substantially depending on the 
disease area, the type of benefit delivered by a medicine and the evidence available to demonstrate that benefit. This is particularly relevant for 
companies developing medicines in rare and genetic diseases, where small populations, limited natural-history data, paediatric populations and 
uncertainty over long-term outcomes already make the measurement of health-related quality of life challenging.⁵⁻⁶

What is actually changing? 

EQ-5D provides a standardised way of describing health and converting patients’ responses into utility values that can then be used to calculate quality-adjusted life years, or quality-adjusted life years (QALYs). The consistency this provides is important to NICE because it allows very different treatments and diseases to be compared within a common cost-effectiveness framework.¹⁻⁶

Until now, NICE’s approach created something of an anomaly. Companies were encouraged to collect the more sensitive EQ-5D-5L questionnaire 
in clinical studies, but NICE did not recommend the previously published English 5L value set. For reference-case analyses, 5L data therefore had to be mapped back onto the older 3L value set.⁶

The new UK value set resolves this issue. NICE now considers EQ-5D-5L the preferred measure of health-related quality of life in adults and 
states that the new UK 5L value set should be used to derive adult utility values in reference-case analyses. EuroQol has also made scoring algorithms available in Excel, R, SAS, SPSS and Stata to support implementation.¹-⁷

This provides a clearer and more internally consistent approach, but it also means that companies cannot assume that an economic model 
developed using the previous NICE reference case will produce broadly the same results simply by updating the tariff.⁵⁻⁸

The impact on cost-effectiveness could be significant 

NICE commissioned an impact assessment using 39 decisions from 37 previous technology appraisals. For cancer medicines, median 
incremental QALYs increased by 13.7% and median incremental cost-effectiveness ratios (ICERs) decreased by 12%, meaning that the medicines examined generally became more cost effective under the new approach. For non-cancer medicines that extended life, the impact was mixed, although the median ICER fell by 8.8%.⁵⁻⁸

The clearest negative effect was seen among non-cancer medicines whose benefits were driven by improvements in health-related quality of life rather than survival. Across this group, median incremental QALYs fell by 37% and median ICERs increased by 58.8%.⁵⁻⁸ NICE rightly cautions that this finding comes from only 11 ICERs across 10 appraisals and cannot be generalised to every quality-of-life-improving medicine. Nevertheless, the scale of the difference shows why companies need to understand the impact on their own technology rather than treating 5L simply as an administrative update.⁵⁻⁸ 

The Association of the British Pharmaceutical Industry (ABPI) reached a similar conclusion after retrospectively examining 71 technology 
appraisals. Its analysis reinforced the finding that the effect differs by therapy area and type of treatment and warned that, in some cases, medicines could face restricted or lost access because they appear less cost effective under 5L. The ABPI has therefore called for implementation and patient access to be monitored closely, with further mitigation considered if problems emerge.⁹ 

This does not make adoption of 5L the wrong decision. A value set should reflect contemporary societal preferences, and the newer descriptive system has advantages in sensitivity and reducing ceiling effects. But methods are not neutral simply because they are technical. Changing the way health is valued changes the relative weight given to different types of treatment benefit, and that has real consequences for appraisal.²⁻⁸

Why this deserves particular attention in rare disease 

The implications for rare disease are more complicated. Some rare-disease treatments could benefit from the change, particularly where they 
produce meaningful survival gains. It would therefore be wrong to suggest that EQ-5D-5L is systematically unfavourable to rare-disease medicines.⁵⁻⁸ 

The challenge is that demonstrating survival benefit can be particularly difficult in rare disease. Trials may contain very small numbers 
of patients, follow-up can be relatively short and natural-history evidence may be incomplete. A treatment could preserve mobility, communication or independence, delay irreversible progression or substantially improve daily functioning, while the available trial evidence remains unable to establish whether those benefits translate into additional years of life.⁵⁻⁶ 

That makes the distinction between a medicine that does not improve survival and one for which a survival improvement cannot yet 
be demonstrated particularly important. In economic modelling, both may initially appear to derive most of their incremental benefit from quality of life, even though their long-term clinical implications may be very different. 

There is also relatively little direct evidence about the impact of the new value set within NICE’s Highly Specialised Technologies (HST) programme. HST evaluations were excluded from NICE’s main ICER impact assessment because of the small number of published HSTs, the fact that many 
relate to childhood diseases, and the greater uncertainty typically associated with utility estimates and other model assumptions in very rare conditions. NICE explicitly linked these uncertainties to the difficulties of evidence-generation in rare diseases.⁵

This is important because rare-disease technologies frequently test the limits of conventional health-related quality-of-life 
measurement. EQ-5D’s consistency is a major advantage, but five broad dimensions cannot necessarily reflect every outcome that is meaningful in a complex neurological, metabolic or genetic condition. Preserving the ability to communicate, slowing cognitive deterioration or delaying the loss of a particular function may be enormously important to patients and families without producing an equivalent change in the EQ-5D index.⁶

Carer quality of life adds another layer. NICE did not specifically model the impact of adopting 5L on carer utilities because 
relatively few evaluations contain suitable data. However, its review found that carer quality of life had been included in 65% of published HST 
evaluations compared with just 4% of standard technology appraisals. This underlines how much more important family and caregiver effects can be in rare and highly specialised conditions.⁵ 

None of these issues are new, nor are they arguments for abandoning a common reference case. They do, however, reinforce the importance of ensuring that the move to 5L does not unintentionally make already difficult-to-measure benefits even harder to demonstrate. 

What should companies do now? 

For companies preparing for NICE, the immediate priority should be to understand what sits behind the utility values in their existing 
evidence base. This needs to go further than identifying whether a model currently says “3L” or “5L”. Teams should establish which descriptive system was used to collect the original data, which country value set was used to generate utilities, whether patient-level health-state responses remain available, and whether utility evidence taken from the literature can be traced back to its original instrument and tariff.¹⁻⁶

Where EQ-5D-5L has already been collected in a trial, the transition may be relatively straightforward. The underlying 5L health profiles 
can be rescored using the new UK value set rather than mapped onto 3L as they were previously. Companies should nevertheless rerun the economic model early. Because changes in utility values affect both the intervention and comparator arms, the resulting impact on incremental QALYs and the ICER is not necessarily intuitive.⁵⁻⁸ 

The position is also manageable where the original trial collected EQ-5D-3L. NICE’s proposed approach to the methods update allows 3L 
descriptive data to be mapped onto the new 5L framework so that utilities are ultimately valued using the UK 5L value set. The important point is that having collected 3L does not make the evidence unusable. However, companies need to understand the appropriate mapping approach and the uncertainty introduced by that additional step.¹⁻⁵ 

A more difficult situation arises where a model contains utility estimates taken from published literature and only the final utility score is available. A value of 0.65 derived using the UK 3L tariff, for example, cannot simply be treated as though it were a 0.65 under the new 5L tariff. If the underlying EQ-5D health-state responses can be obtained, they can potentially be revalued or mapped appropriately. If they cannot, companies will need to consider alternative evidence, appropriate conversion or mapping approaches where available, and how uncertainty should be explored within the model.¹⁻⁶ 

The same principle applies to utilities generated using another country’s value set. Value sets are country-specific because they are 
intended to reflect differences in how populations value health states. If a multinational trial collected 5L descriptive data but utilities were initially calculated using a US, French or other national tariff, the underlying health profiles can be rescored using the new UK 5L value set for the NICE reference case. Simply carrying the foreign utility scores into the UK model would not meet the objective of using UK societal preferences.¹⁻³ 

This is why companies should avoid treating the move as a modelling exercise that begins shortly before submission. Global 
evidence-generation plans, clinical trial protocols and statistical analysis plans should now consider whether the data being collected will allow the UK affiliate to meet NICE’s new requirements several years later. Where EQ-5D is appropriate, collecting 5L directly will generally provide the cleanest route and avoid relying unnecessarily on mapping.¹⁻² 

Preparing for more than a change in tariff 

Companies with assets approaching UK HTA should therefore conduct an early impact assessment. Existing cost-effectiveness models can be 
rerun using the new value set to identify whether the effect is material, which model health states are driving any change and whether the impact could alter pricing, evidence-generation or access strategy. 

For some products, there may be little effect. For others, particularly those where value is concentrated in improvements in morbidity 
rather than survival, the difference could be substantial. Understanding this before submission creates more options: additional quality-of-life evidence can potentially be generated, assumptions can be validated, alternative approaches can be considered where EQ-5D does not adequately capture the condition,⁶ and commercial strategy can be developed with a clearer understanding of the likely cost-effectiveness position. 

Rare-disease developers should take an especially broad view. This means considering whether EQ-5D adequately represents the outcomes 
patients regard as meaningful, how utilities change as disease progresses, whether caregiver health effects are material, and whether existing natural-history or real-world evidence can help demonstrate benefits that a small clinical trial cannot capture alone. The objective should not be to find ways around the reference case, but to ensure NICE receives the fullest and most robust picture of the value a medicine provides.⁶

There is also a transition issue for technologies already moving through NICE. NICE has made clear during the development of the new policy that evaluations already underway should not simply be retrospectively switched onto the new methodology. Companies should therefore establish early which version of NICE’s methods applies to their individual topic rather than assuming that every appraisal immediately moves to 5L.¹

Getting implementation right 

The adoption of EQ-5D-5L is a sensible evolution of NICE’s methods. The new measure is more sensitive, the UK value set is based on contemporary evidence, and it removes the increasingly awkward requirement to collect data using one descriptive system before mapping it back to another.¹⁻⁴⁻⁶⁻⁷ 

However, NICE’s own analysis demonstrates why implementation needs to be monitored. Different forms of health gain are affected differently, 
and some treatments whose primary benefit is improved quality of life may face a more difficult cost-effectiveness case. For rare diseases, where small populations, paediatric disease, incomplete natural-history evidence and difficulties measuring patient and carer quality of life are already common, these methodological effects deserve particular attention.⁵⁻⁶⁻⁸

For manufacturers, the message is therefore not simply to start using a new tariff. Companies need to audit their utility evidence, 
understand the impact of 5L on existing models, identify where mapping or alternative evidence will be required, and build the new requirements into future evidence-generation plans. Doing this early will be considerably easier than discovering shortly before a NICE submission that an established global model is no longer aligned with the UK reference case.¹⁻⁶ 

At Kintiga, we support companies across the lifecycle of NICE engagement, from early evidence-generation and market access strategy 
through to health economic modelling, HTA submissions and the policy environment surrounding access. For companies assessing the implications of the new EQ-5D-5L value set, this can include reviewing existing utility evidence and models, assessing the potential impact on cost-effectiveness, identifying evidence gaps and mapping requirements, and developing an integrated evidence 
and access strategy ahead of NICE evaluation. 

The full consequences of the move to EQ-5D-5L will only become apparent as technologies are evaluated under the new approach. Ensuring 
that companies understand the change early, and that NICE continues to monitor its effect across different patient populations and treatment types, will be essential if a technically stronger methodology is also to support timely and equitable patient access.⁵⁻⁹