Caregiver Health-Related Quality of Life in National Institute for Health and Care Excellence (NICE) Appraisals: From Inception to 2023

OBJECTIVES: Health technologies primarily target patient outcomes, but improvements in patients’ health can also have a significant impact on carers with the potential to improve carer health-related quality-of-life (HRQoL). Consequently, health technology assessments (HTA) should, when relevant, consider carer health effects to fully capture the potential benefit of treatment. However, the impact of treatment on carers is inconsistently included in HTAs and uses varying methods. This study aimed to provide a comprehensive overview on the inclusion of carer HRQoL in NICE submissions.

METHODS: Technology appraisals (TAs) and highly specialized technologies (HSTs) published from inception in 2000 to August 2023 were screened using terms such as ‘carer’, ‘caregiver’, and ‘family’. Data sources, methods, and committee discussions concerning carer HRQoL and its implementation in decision-making were extracted and analyzed.

RESULTS: In total, 484 HTAs have been published with NICE recommendations. Of these, carer HRQoL was submitted in the cost-utility analyses of 49 original submissions across 32 disease areas (10.1%; 32/460 TAs, 17/24 HSTs). The carer perspective was considered in NICE decision-making in 44/484 submissions (9.1%) in 27 disease areas and 40 (8.3%) included carer HRQoL in the health economic models. Chronologically, most submissions including carer HRQoL occurred after 2019, when the NICE Decision Support Unit published guidance on modeling carer HRQoL in HTAs. Using one or more of five methods (additive carer utility, additive caregiver disutility, absolute carer quality-adjusted life year, applying a carer or patient age cap, and carer bereavement), carer HRQoL was generally applied as a function of patient health state, treatment arm, or mortality.

CONCLUSIONS: The carer perspective is an increasingly important factor in NICE HTA decision-making. Solid justifications, robust evidence sources, and precedent modeling approaches are required to support the inclusion of carer HRQoL in economic modeling.