NICE APPEAL PANEL DECISIONS AND REASONING ON CARER HEALTH-RELATED QUALITY OF LIFE APPEAL POINTS
Author(s)
Magda Aguiar, PhD1, Will Sullivan, PhD2, Rob Blissett, EngD3.
1Maple Health Group, Porto, Portugal, 2Maple Health Group, Sheffield, United Kingdom, 3Maple Health Group, Roscommon, Ireland.
1Maple Health Group, Porto, Portugal, 2Maple Health Group, Sheffield, United Kingdom, 3Maple Health Group, Roscommon, Ireland.
OBJECTIVES: The National Institute for Health and Care Excellence (NICE) manual sets out preferred methods for economic evaluation, including methods to capture patients’ and, where relevant, carers' health effects. However, accounting for carer utility in economic evaluations is a known methodological and data challenge. This study examines how carer utility assumptions have been handled in NICE appeal decisions.
METHODS: NICE appeals with hearing dates from 1 March 2016 were identified from an 11 May 2026 search of the NICE website. Appeal decision documents were retrieved; those including carer utility appeal points were identified and relevant discussion points were extracted and analysed.
RESULTS: Twenty-nine NICE appeal hearings were identified; appeal decisions were available for 24; five included carer utility arguments; three of these five were from 2026. Carer utility appeal points were only dismissed in one 2026 case (cerliponase alfa for neuronal ceroid lipofuscinosis type 2), on the grounds that the committee had acted appropriately within the applicable evaluation framework. In the two earlier cases, appeals were upheld on procedural grounds, with panels focused on ensuring wording in guidance reflected fair and reasonable process. In the two most recent 2026 cases (donanemab and lecanemab for Alzheimer’s disease), the panel considered it illogical that the committee used EuroQol 5-dimension (EQ-5D) carer utility data, when the evidence, including the source utility study, clinical expert testimony, independent vignette data, and External Assessment Group scenario analyses, indicated that EQ-5D underestimated carer burden.
CONCLUSIONS: While few carer utility appeal points have been heard at NICE appeals, they appear to be becoming more common. Recent appeal panel decisions pose interesting questions for future appraisals, given the discrepancy between NICE’s preferred approach to measurement and valuation of health effects and the evidence considered most appropriate by recent appeal panels.
METHODS: NICE appeals with hearing dates from 1 March 2016 were identified from an 11 May 2026 search of the NICE website. Appeal decision documents were retrieved; those including carer utility appeal points were identified and relevant discussion points were extracted and analysed.
RESULTS: Twenty-nine NICE appeal hearings were identified; appeal decisions were available for 24; five included carer utility arguments; three of these five were from 2026. Carer utility appeal points were only dismissed in one 2026 case (cerliponase alfa for neuronal ceroid lipofuscinosis type 2), on the grounds that the committee had acted appropriately within the applicable evaluation framework. In the two earlier cases, appeals were upheld on procedural grounds, with panels focused on ensuring wording in guidance reflected fair and reasonable process. In the two most recent 2026 cases (donanemab and lecanemab for Alzheimer’s disease), the panel considered it illogical that the committee used EuroQol 5-dimension (EQ-5D) carer utility data, when the evidence, including the source utility study, clinical expert testimony, independent vignette data, and External Assessment Group scenario analyses, indicated that EQ-5D underestimated carer burden.
CONCLUSIONS: While few carer utility appeal points have been heard at NICE appeals, they appear to be becoming more common. Recent appeal panel decisions pose interesting questions for future appraisals, given the discrepancy between NICE’s preferred approach to measurement and valuation of health effects and the evidence considered most appropriate by recent appeal panels.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR52
Topic
Health Technology Assessment, Patient-Centered Research
Topic Subcategory
Health State Utilities
Disease
No Additional Disease & Conditions/Specialized Treatment Areas