Recognizing the broader value of caregiving in healthcare

The 2025 ISPOR Annual Meeting in Montréal marked an increasing shift in how the value of health interventions is defined. A focus this year was on “broader value” captured in the generalized cost effectiveness analysis (GCEA) framework, which highlights the need to go beyond traditional clinical and patient outcomes to include factors such as caregiver impact, societal benefits, and patient experience. Broader value is a key area of expertise at LCP Health Analytics where we look to articulate and quantify a better reflection of the breadth of value medicines bring to patients, the economy and wider society.

As healthcare systems continue to evolve toward more holistic, equitable models of care, caregiver value is rapidly emerging as an essential metric within health economics and outcomes research (HEOR). The recognition of caregiver contributions is increasingly in the spotlight in terms of how we assess treatments, measure outcomes, and define healthcare success.

In this column we explore how caregiver value is being captured, how it varies across therapeutic areas and countries, and why it is increasingly critical for shaping evidence generation, access decisions, and value-based healthcare delivery.

Understanding caregiver value

Caregivers, often family members or close friends, provide unpaid support to individuals facing acute or chronic health conditions. This care ranges from administering medications and attending medical appointments to offering emotional and logistical support. The economic and emotional toll on caregivers is significant. In the UK, for example, there are 5.8 million unpaid caregivers, translating to almost 1 in 10 people. This represents significant time resource and opportunity cost for those caregivers, with almost a third of caregivers providing care for 50 or more hours per week.

There are also important equity considerations, such as women are more likely than men to be unpaid caregivers. Certain clinical areas, such as neurology, dementia and Alzheimer’s disease, rare and pediatric diseases, oncology and elderly care are all more likely to have a significant care burden over others.

“Yet the contribution of caregivers has seldom been included in cost-effectiveness models and health technology assessments. Including caregiver value could not only create a more accurate picture of treatment impact but also supports more sustainable healthcare decision-making.”

Multiple sclerosis (MS) is one condition where inclusion of caregiver impact is already impacting decision-making. Analysis has shown that including caregiver disutility could reduce the incremental cost-effectiveness ratio (ICER) by £2600–£11,498. In the rare disease space, inclusion of family quality-adjusted life year (QALY) loss decreased the base case ICER from £36,360 to £33,201 for adenosine deaminase-deficient severe combined immunodeficiency, moving closer to the National Institute for Health and Clinical Excellence (NICE) willingness-to-pay threshold.

As value frameworks expand to include non-traditional metrics, caregiver outcomes are increasingly seen as integral to treatment benefit.

Evolving methodologies for measuring caregiver impact

Advancements in HEOR methodologies are enabling researchers to quantify caregiver value in a more standardized and robust manner. Multiple approaches are being employed across academic, regulatory, and payer environments globally:

1. Burden and experience assessments

Validated instruments such as the Zarit Burden Interview and the CarerQol measure physical, psychological, and social strain. Additional widely used tools include the Caregiver Strain Index (CSI), Caregiver Burden Inventory (CBI), Relative Stress Scale (RSS), Montgomery-Borgatta Scale, Caregiver Reaction Assessment (CRA), and Burden Scale for Family Caregivers (BSFC). While useful, these tools often lack granularity in capturing nuanced impacts such as autonomy, social functioning, and relationship dynamics.

2. Utility-based measurement

Converting caregiver experience into utility values allows for integration into cost-utility analyses. Tools like EQ‑5D, SF-36, HUI 3 and ICECAP-A help quantify the disutility caregivers experience. In conditions such as MS, these utilities have been incorporated into NICE appraisals, where the caregiver burden scales with disease progression. This methodology ensures that interventions targeting disease-modifying therapies are evaluated not only for direct patient benefit but also for their indirect impact on family caregivers.

3. Time-cost and productivity models

Modeling caregiver time based on opportunity cost (e.g., lost wages) or replacement cost (e.g., the cost of professional care) offers another lens for valuation. These estimates are particularly relevant in chronic and pediatric conditions, where long-term caregiving can represent a substantial economic burden. Time-cost models can be linked to quality-of-life changes, with such models existing from a US and UK perspective. At the 2025 ISPOR Annual Meeting in Montréal, LCP presented an analysis comparing US and UK time-cost models in the context of obesity, finding that the US model more explicitly captures the time of the caregiver, rather than just that of the patient.

4. Spillover effects and societal models

As payer expectations expand, HEOR models are increasingly incorporating caregiver impact into broader societal cost-effectiveness frameworks. In diseases such as Duchenne muscular dystrophy and dementia, researchers have demonstrated that treatment benefits extend beyond the patient to affect household finances, labor participation, and even mental health. Capturing these spillover effects supports more comprehensive policy decisions and better aligns with real-world healthcare dynamics.

Global variation in caregiver inclusion

The extent to which caregiver value is included in HTAs and economic evaluations varies significantly across countries. An internal LCP review of the EU27 HTA guidelines found that caregiver or family spillover was only explicitly mentioned in 14 out of 24 available. Selected countries take the following approaches:

• UK: NICE supports the inclusion of caregiver utilities particularly for chronic, degenerative, rare and pediatric conditions, although it is not routinely incorporated.
• Norway and Sweden: These markets offer formalized guidance for including family spillover in health economic evaluations.
• US: While there is growing interest in societal perspectives, caregiver value is not routinely incorporated into cost-effectiveness models due to payer variation and methodological inconsistencies.

This variability reflects not only regulatory preferences but also broader societal values around family care, labor compensation, and healthcare access. For pharmaceutical and life sciences companies, understanding these differences is essential for tailoring market access strategies and aligning with regional HTA requirements. From the perspective of HTA bodies, the growing recognition of caregiver value underscores the need to develop more consistent and routine approaches for incorporating it into assessments.

Implications for evidence generation and market access

Recognizing caregiver value has direct implications for pharmaceutical companies aiming to demonstrate the full impact of their therapies. By expanding the evidence base to include caregiver outcomes, companies can:

• Strengthen cost-effectiveness analyses through inclusion of indirect benefits
• Enhance market access strategies by aligning with societal value frameworks
• Support regulatory submissions with a broader understanding of treatment impact
• Identify new endpoints (e.g., return to work or normal activities) and targeted support programs that address caregiver burden

Ultimately, caregiver value represents a critical lever in achieving sustainable healthcare delivery, equitable access, and meaningful outcomes for both patients and families.

The conversation around caregiver value and patient/caregiver experience at ISPOR 2025 reflects a broader transformation in how healthcare systems define impact. As HTA bodies, payers, and researchers seek to evaluate interventions more holistically, the inclusion of caregiver metrics is no longer optional, it is essential.

“Recognizing and measuring caregiver value is a foundational step toward more inclusive, effective, and sustainable healthcare. By incorporating this broader perspective, life sciences companies, policymakers, and providers can ensure that the full spectrum of care from diagnosis to long-term support is reflected in decision-making processes. Caregivers are not just adjacent to the patient journey; they are part of it."

Authors

Robert King
Health Economist and Consultant, LCP Health Analytics

Robert leads projects at LCP in quantifying societal value of health. Robert has previous experience in policy consultancy and at NICE working on the development of cost-effective clinical guidelines.

Emma Hawe
Principal and Evidence Synthesis, Statistics and EU-HTAR Lead, LCP Health Analytics

Emma specializes in the analysis of data from a range of sources including, clinical trial data, real world evidence and published aggregate data. Emma has authored over 100 peer-reviewed publications and several books on UK and International Health Statistics and is committed to producing robust and credible evidence to support payer and reimbursement decisions.

Disclaimer

The opinions expressed in this feature are those of the authors and do not necessarily reflect the views of The Evidence Base® or Becaris Publishing Ltd.

Sponsorship for this Guest Column was provided by LCP Health Analytics.