Presentation (CTI)

OBJECTIVES: Carer quality of life (QoL) is increasingly recognised as an important component in evaluating the broader value of healthcare interventions, especially in high-burden and rare disease indications. While carers play a critical role in supporting patients—often at significant personal and economic cost— Health Technology Assessment (HTA) bodies have historically placed limited weight on the carer burden.
METHODS: This study aimed to assess the consideration of carer QoL in health technology assessments (HTA) across six global markets; UK, Germany, France, Canada, Australia, and Brazil, and to identify opportunities to inform evidence generation strategies. A targeted review of national HTA guidelines, published assessments, and relevant grey literature was conducted for each market. This was supplemented by a targeted survey of HTA representatives across each market. The analysis focused on: (1) the formal acknowledgement or inclusion of carer QoL in HTA submissions; (2) the relative weight of carer QoL in decision-making processes; and (3) implications for future evidence generation.
RESULTS: Findings indicate significant variation in the acceptance of carer QoL across markets. Germany and France acknowledge carer impacts to varying degrees but with limited formal influence on outcomes, while the UK and Canada provide more defined pathways for its inclusion. In Australia, carer QoL may be included in supplementary analyses, and in Brazil, although legislation mandates patient and carer input, quantitative carer QoL data are infrequently submitted. Across these markets, a consistent need emerges for standardised methodologies and robust evidence to support the inclusion of carer QoL in HTAs.
CONCLUSIONS: Carer QoL remains deprioritised in global HTAs. Generating robust carer QoL outcomes in evidence generation may enhance future submissions by reflecting the full value of health interventions, particularly in areas of high unmet need. Incorporating carer QoL within HTAs can lead to more comprehensive evaluations, potentially influencing reimbursement and access decision-making.