For decades, HTAs have focused on patient outcomes, which are typically measured in quality-adjusted life years (QALYs) (Mitchell,2021). However, by centring exclusively on patients, most HTAs overlook the informal carers perspective which is central to real-world care (Powell et al,2025).
Informal carers include family members, friends or partners who provide ongoing support to people living with chronic or life-limiting conditions (Lung et al,2021). Across England and Wales, these informal carers contribute an estimated £445 million every day which is about £162 billion a year (Carers UK,2023). This contribution is immense, but the support often comes at a significant personal cost. Carers often work prolonged hours and suffer disrupted sleep. They also face physical strain, emotional distress, lost earnings, and social isolation which all take a cumulative toll on their health-related quality of life (Carers UK: State of caring, 2023). When a new medical treatment is introduced, it can either reduce or increase the demands placed on carers whether through time commitment, physical effort, or emotional strain (Zhou et al,2024; Jacquet et al, 2019). Family spillover effects should be factored into how HTAs assess the overall value of an intervention (Leech et al, 2023). Ignoring carers risks misjudging how beneficial or burdensome a therapy truly is, not just for the patient but for the wider network of support that surrounds them (Vurgun et al, 2021).
In 2022, Office of Health Economics questioned whether existing HTA guidance captures carer outcomes (OHE, 2022). The updated NICE technology evaluation manual does allow analysts to consider the impact of caring on a carer’s quality of life but lacks practical guidance. In the methods review, NICE drafted “minimum evidence requirements”: (1) allow carer impacts only when they are proven “substantial,” (2) insist on EQ-5D as the measurement tool, (3) limit analysis to one primary carer, and (4) exclude bereavement effects. OHE argues such restrictions would hinder analysts from accounting for caregiver spillovers and could undervalue treatments that ease informal-care burdens, urging NICE to adopt a more adaptable guidance on carer outcomes in future evaluations (OHE, 2022).
To address this gap, Bourke et al. (2024) developed a conceptual framework to guide when carer burden should be considered in HTAs. The framework is structured around two key dimensions: the intensity of care and the duration over which care is provided. Conditions involving high-intensity, long-term caregiving such as dementia, muscular dystrophy, and severe paediatric illnesses come under the ‘high relevance’ quadrant, indicating a strong case for including caregiver outcomes in HTAs. In contrast, short-term, low-intensity care scenarios are considered to have ‘low relevance’, while intermediate conditions like cancer or diabetes may vary depending on the course of the disease and burden. Bourke et al. (2024) also highlighted the “carer QALY trap”, where life-extending treatments that do not improve patient quality of life may unintentionally worsen carer outcomes. Without accounting for these spillover effects, HTAs risk overestimating a treatment’s overall value. This framework offers a practical and useful ethical tool for including carer burden more consistently into health economic evaluations.
The BRAVER Roadmap, published in 2025 by the OHE, outlines a practical approach for incorporating broader value elements such as carer health-related quality of life into HTAs (Theakston et al, 2025). BRAVER stands for Broader Assessment of Value of Health Interventions in the APAC Region. The key message is the need to adopt a societal perspective, particularly in Asia-Pacific countries facing rising chronic disease and ageing populations. Although this approach aligns with broader health, economic, and equity objectives, it remains underused due to methodological and capacity constraints. The roadmap calls for more supportive policy environments, stronger data and evaluation methods, and direct involvement of patients and carers to ensure HTA better reflects real-world impact and societal priorities (Theakston et al, 2025).
In conclusion, informal carers are a critical component of the healthcare system and should be more systematically recognised within HTAs. Excluding their experiences from evaluations risks decisions that appear cost-effective on paper but shift unacknowledged burdens onto families and the broader society. For evaluations to be both fairer and more accurate, HTA frameworks must incorporate carer outcomes wherever informal care plays a substantial role. This includes the development of clear methodological guidelines, routinely gathering carer-related data, and funding the appropriate tools for capturing carer health and wellbeing. Recognising and accounting for carers’ contributions is not only an ethical responsibility but also vital for building health policies that are more sustainable and socially responsive.