Inclusion of Carer Health-Related Quality of Life (HRQOL) in National Institute for Health and Care Excellence (NICE) Appraisals Published Since 2019


Ryczek E1, Treharne C2, Thurgar E1
1Mtech Access, Bicester, UK, 2Mtech Access, Bicester, OXF, UK

Presentation Documents

OBJECTIVES: Pennington (2020) reviewed methods for including carer HRQoL in NICE technology (TA) and highly specialised technology (HST) appraisals published up to 2019, and reported carer HRQoL estimates for adult populations from two publications. This research reviewed TAs and HSTs published since 2019 to report how many appraisals considered carer HRQoL in adult populations, and whether new sources of carer HRQoL estimates were used in these appraisals.

METHODS: TAs and HSTs published between 01/01/2019–23/03/2022 were reviewed. Final appraisal determination and final evaluation documents were searched for the terms ‘carer’, ‘caregiver’ or ‘informal care’. TAs and HSTs where carer HRQoL was discussed were further analysed.

RESULTS: Overall, 238 published appraisals (N=9 HSTs, N=229 TAs) were identified. Nine HSTs and 20 TAs mentioned carer HRQoL. Of these, 3 HSTs and 12 TAs focused solely on adults; the committee accepted carer HRQoL in all three HSTs and three of the 12 TAs. In two HSTs (transthyretin-related amyloidosis) and two TAs (multiple sclerosis), carer HRQoL was modelled as a function of the patient’s health state. Carer disutilities were derived from a maximum value previously accepted by NICE and highlighted by Pennington (2020), which was based on Neumann et al (2000), obtained using HUI3 and a USA value set. Another TA (chronic immune thrombocytopenia) used an estimate from an unclear literature source, and one HST (familial chylomicronaemia syndrome) used a single utility decrement agreed during NICE committee discussion.

CONCLUSIONS: No new literature sources for carer HRQoL estimates in adult populations were identified in this review. The appraisals reviewed relied on values derived from a utility measure not preferred by NICE and a USA value set, or were based on NICE committee discussions. This research highlights the need for more sources of carer HRQoL data to support NICE submissions and capture the indirect disease impact.

Conference/Value in Health Info

2022-11, ISPOR Europe 2022, Vienna, Austria

Value in Health, Volume 25, Issue 12S (December 2022)




Economic Evaluation, Health Technology Assessment, Patient-Centered Research

Topic Subcategory

Decision & Deliberative Processes, Health State Utilities, Novel & Social Elements of Value


No Additional Disease & Conditions/Specialized Treatment Areas

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