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Informal carers play a critical role in supporting patients, often at significant personal, emotional, and financial cost. Yet, their quality of life (QoL) is inconsistently captured in health technology assessments (HTAs), potentially underestimating the full value of new therapies.

This research examines how six national HTA systems currently address carer QoL, identifies gaps between guidance and real-world practice, and highlights opportunities to strengthen its role in value assessment.

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Abbreviations: DMD: Duchenne’s Muscular Dystrophy; EQ-5D: EuroQoL Health-related quality of life questionnaire across 5-Dimensions; HAS: Haute Autorité de Santé; HRQoL: Health Related Quality of Life; HST: Highly Specialised Technology; HTA: Health Technology Assessment; IQWiG: Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen; MCID: Minimal Clinically Important Difference; NICE: National Institute for Health and Care Excellence; PBAC: Pharmaceutical Benefits Advisory Committee; QoL: Quality of Life; QALY: Quality-Adjusted Life Year; SF-6D: Short Form 6 Dimension classification system; TA: Technology Appraisal

References:

1. Pinquart M, Sörensen S. Correlates of Physical Health of Informal Caregivers: A Meta-Analysis. J Gerontol B Psychol Sci Soc Sci 2007; 62: P126–P137 
2. Pennington B, Al-Janabi H. Modelling Informal Carers’ Health-Related Quality of Life: Challenges for Economic Evaluation. Appl Health Econ Health Policy 2024; 22: 9–16. 
3. Pharmaceutical Benefits Advisory Committee (PBAC). Section 3A.1 Overview and rationale of economic evaluation. PBAC guidelines. https://pbac.pbs.gov.au/section-3a/3a-1-overview-and-rationale-of-economic-evaluation.html 
4. Ministério da Saúde (Brasil). Diretrizes Metodológicas: Qualidade de Vida em Análises Econômicas. Brasília: Ministério da Saúde; 2023. https://rebrats.saude.gov.br/images/Documentos/2024/Diretrizes_Metodologicas_Qualidade_de_Vida_em_Analises_Economicas.pdf 
5. CADTH. Guidelines for the economic evaluation of health technologies: Canada [4th edition]. Ottawa: Canadian Agency for Drugs and Technologies in Health; 2017. https://www.cda-amc.ca/sites/default/files/pdf/guidelines_for_the_economic_evaluation_of_health_technologies_canada_4th_ed.pdf 
6. Haute Autorité de Santé (HAS). Choices in Methods for Economic Evaluation. Saint-Denis La Plaine: HAS; 2020. https://www.has-sante.fr/upload/docs/application/pdf/2020-11/methodological_guidance_2020_-choices_in_methods_for_economic_evaluation.pdf 
7. Institute for Quality and Efficiency in Health Care (IQWiG). General Methods Version 7.0 [English translation]. Cologne: IQWiG; 2023. https://www.iqwig.de/methoden/general-methods_version-7-0.pdf 
8. National Institute for Health and Care Excellence (NICE). NICE health technology evaluations: the manual [PMG36]. London: NICE; 2022. https://www.nice.org.uk/process/pmg36/resources/nice-health-technology-evaluations-the-manual-pdf-72286779244741