Carer Health-Related Quality of Life: A Review of Modelling Considerations in National Institute for Health and Care Excellence Technology Appraisals (2000-2023).

OBJECTIVES: Carer health-related quality of life (HRQoL) is increasingly used to support health technology assessments conducted by the National Institute for Health and Care Excellence (NICE). Modelling approaches and underlying rationales considered in NICE appraisals before the publication of the 'Spillovers in Health Economic Evaluation and Research' guidance were reviewed, alongside committee feedback and stated preferences. METHODS: The NICE website ( www.nice.org.uk ) was searched for final appraisal determinations (FADs) from 2000 to August 2023 that considered carer HRQoL. FADs were reviewed for an expression of whether carer HRQoL data were considered qualitatively (without formal economic modelling) or quantitatively (incorporated into cost-utility analyses) in decision-making. All related committee papers were retrieved for eligible submissions. Modelling approaches used were extracted as well as sources of carer HRQoL and reasons for including or excluding carer HRQoL from decision-making. RESULTS: NICE considered carer HRQoL data (sourced from observational studies, surveys, vignettes and clinical trials) for decision-making in 90% (44/49) of appraisals submitting such data (82% were considered quantitatively); carer HRQoL data were considered for decision-making in all appraisals involving rare diseases and paediatric populations. Three approaches (additive carer disutility [used in 90% of identified appraisals], additive carer utility [14%] and absolute carer utility [2%]) and two adjustments (application of carer/patient age/utility cap [20%] and carer/family bereavement [10%]) were identified for incorporating carer HRQoL. There was considerable variation in the implementation of these methods/adjustments. CONCLUSIONS: This review of NICE appraisals identified three key methodologies and two adjustments for including carer HRQoL; the additive carer disutility approach was the most frequently used.