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To generate health utilities and evaluate the benefits to health-related quality of life (HRQoL) for health technologies under assessment, the UK National Institute for Health and Care Excellence (NICE) recommends the use of the EQ-5D1.
The EQ-5D is a generic, patient-reported questionnaire that asks respondents about their quality of life over five domains: mobility, self-care, usual activities, pain/discomfort, and anxiety/depression2.
Responses are converted into a 5-digit identifier representing a specific health state. This identifier can then be used to generate a health utility based on published value sets.
For further detail on how health utilities are estimated using the EQ-5D, take a look at our PREVIOUS BLOG exploring that topic.
Direct measurement of HRQoL using the EQ-5D is considered the gold standard by NICE, primarily because the generic nature of the instrument permits standardization across economic evaluations. However, there are several situations in which the EQ-5D may not be the most appropriate instrument. In this blog, we will explore some of these scenarios.
When the EQ-5D can fall short
1. The EQ-5D fails to capture the impact of specific symptoms on HRQoL
As the EQ-5D is a generic questionnaire, rather than disease specific, patients may experience impacts to their quality of life that are not covered by the five EQ-5D domains. This issue has been observed for skin conditions like psoriasis and atopic dermatitis, for which the EQ-5D has been shown to lack sufficient sensitivity, particularly when evaluating the impact to HRQoL of symptoms like itching and embarrassment3.
2. The EQ-5D generates ceiling and floor effects
Another issue with the EQ-5D that is observed with certain conditions is the generation of ceiling and floor effects. These are when respondents report the best or worst possible option for a particular domain, respectively. While some extreme scores can typically be expected across a respondent population, in some conditions, ceiling and floor effects occur more often than expected when using the EQ-5D. For example, in chronic lower back pain, many patients are likely to experience severe pain, and therefore report extremely low EQ-5D scores for pain/discomfort, while other aspects of health may remain relatively unaffected by the condition, with the majority of patients reporting extremely high scores across other domains4. These effects can then hamper the sensitivity of the instrument in response to changes in a patient’s condition, and lead to the calculation of misleading health utilities, thereby giving an inaccurate assessment of the impact of a condition on HRQoL.
3. The EQ-5D recall period is not appropriate
The EQ-5D can also struggle to accurately evaluate the impact to HRQoL of episodic diseases that present with infrequent, but highly burdensome symptoms, e.g., relapsing-remitting multiple sclerosis or epilepsy5. This is because the EQ-5D asks respondents to rate their health for the day on which they are completing the questionnaire. This brief recall period ensures the respondent’s current health is captured, but for those with episodic or intermittent conditions who are not currently experiencing symptoms, their health state as quantified by the EQ-5D will not reflect the overall impact of their condition on their HRQL.
Alternatives to the EQ-5D
If the EQ-5D is not considered appropriate for generating health utilities, other approaches may be suitable instead. Depending on the circumstances, these could include the use of other generic instruments (e.g., the SF-36) or a more appropriate, condition-specific instrument. Returning to the example of skin conditions, one approach that can be used to collect HRQoL data is by using a more targeted instrument, such as the dermatology life quality index (DLQI). Data from the condition-specific instrument can then be used to calculate health utilities directly, or it can be mapped onto existing estimations of EQ-5D utilities for a given population of patients.
To use an alternative, NICE first requires that evidence be provided to demonstrate that the EQ-5D is not the most appropriate measure. This must show that the EQ-5D lacks key dimensions of health, and that it does not perform as expected for a given patient population. If this is the case, to decide which alternative is the most appropriate, NICE provides a hierarchy of preferred methods for measuring HRQoL; see Figure 1.
Figure 1: Hierarchy of preferred health-related quality of life methods. Source: NICE health technology evaluations: the manual
If you’d like to get in touch with one of our experts to discuss our experience in utility generation, you can email info@vitaccess.com.
References
1. National Institute for Health and Care Excellence. NICE health technology evaluations: The manual. NICE; last updated 2025. https://www.nice.org.uk/process/pmg36/chapter/economic-evaluation-2
2. Rabin, R., & de Charro, F. EQ-5D: a measure of health status from the EuroQol Group. Annals of Medicine 33(5):337-343. 2001.
3. Feng J, Yin Y, Luo N, et al. Performance of the EQ-5D-5L With Skin Irritation and Self-Confidence Bolt-On Items in Patients With Urticaria. Value in Health. 2025. doi:https://doi.org/10.1016/j.jval.2025.02.010
4. Garratt, A.M., Furunes, H., Hellum, C. et al. Evaluation of the EQ-5D-3L and 5L versions in low back pain patients. Health Qual Life Outcomes 19, 155 (2021). https://doi.org/10.1186/s12955-021-01792-y
5. Gnanasakthy, A., DeMuro, C.R. The Limitations of EQ-5D as a Clinical Outcome Assessment Tool. Patient 17, 215–217 (2024). https://doi.org/10.1007/s40271-024-00683-w
By Jack Lawrence
