CAREGIVER IMPACT VALUE FRAMEWORK: UNLOCKING SOCIETAL VALUE
Author(s)
Jee H. Choe, MS1, Stacey Kowal, BS, MSc2, Robert B. McQueen, BA, MA, PhD3, Boshen Jiao, MPH, PhD1, Fadoua El Moustaid, PhD4;
1University of Southern California, Los Angeles, CA, USA, 2Genentech, Alameda, CA, USA, 3University of Colorado Skaggs School of Pharmacy and Pharmaceutical Science, Aurora, CO, USA, 4Genentech, Las Vegas, NV, USA
1University of Southern California, Los Angeles, CA, USA, 2Genentech, Alameda, CA, USA, 3University of Colorado Skaggs School of Pharmacy and Pharmaceutical Science, Aurora, CO, USA, 4Genentech, Las Vegas, NV, USA
Presentation Documents
OBJECTIVES: Informal caregivers are largely unacknowledged by healthcare systems, which fail to incorporate the impact of caregiving into decision-making. With an aging population and increased chronic disease, caregiving intensity is projected to rise. This study will create a comprehensive framework to estimate caregiver impact, addressing the lack of standardized evaluation methods and identifying relevant data sources.
METHODS: A targeted literature review was conducted to assess caregiving, specifically examining its effects on caregivers' time, health, emotional well-being, finances, and spillover effects. The review spanned multiple disease areas and analyzed 52 publications to capture diverse caregiving experiences and current assessment practices. It also examined relevant data sources, policies, and guidelines to understand the current decision-making and modeling approaches. These findings led to the development of a modeling framework to identify key quantitative and qualitative assessment areas for estimating the impact on caregivers for a specific disease and treatment.
RESULTS: Existing literature shows a gap in comprehensively assessing caregiver impact. Caregiver experiences vary by disease and available support. Current national surveys, while capturing caregiving prevalence, lack crucial disease severity and condition-specific details. National aging data offers richer information but has limited generalizability. Globally, HTA integration of caregiving considerations is fragmented, though US recognition is growing (e.g., CPT codes). Cost-of-illness studies typically focus on economic costs like productivity losses. To address these shortcomings, a caregiver value framework was developed to systematically quantify the multifaceted impacts on caregivers, capturing needs relative to disease severity, available resources, and other key determinants.
CONCLUSIONS: Despite the significant and increasing burden of caregiving on families and society, current evidence shows considerable shortcomings in how caregiver impact is assessed. To address this, healthcare decision-making needs to evolve by systematically integrating caregiving impacts. This requires improving data collection, standardizing measurement approaches, and explicitly acknowledging these impacts within value assessment frameworks.
METHODS: A targeted literature review was conducted to assess caregiving, specifically examining its effects on caregivers' time, health, emotional well-being, finances, and spillover effects. The review spanned multiple disease areas and analyzed 52 publications to capture diverse caregiving experiences and current assessment practices. It also examined relevant data sources, policies, and guidelines to understand the current decision-making and modeling approaches. These findings led to the development of a modeling framework to identify key quantitative and qualitative assessment areas for estimating the impact on caregivers for a specific disease and treatment.
RESULTS: Existing literature shows a gap in comprehensively assessing caregiver impact. Caregiver experiences vary by disease and available support. Current national surveys, while capturing caregiving prevalence, lack crucial disease severity and condition-specific details. National aging data offers richer information but has limited generalizability. Globally, HTA integration of caregiving considerations is fragmented, though US recognition is growing (e.g., CPT codes). Cost-of-illness studies typically focus on economic costs like productivity losses. To address these shortcomings, a caregiver value framework was developed to systematically quantify the multifaceted impacts on caregivers, capturing needs relative to disease severity, available resources, and other key determinants.
CONCLUSIONS: Despite the significant and increasing burden of caregiving on families and society, current evidence shows considerable shortcomings in how caregiver impact is assessed. To address this, healthcare decision-making needs to evolve by systematically integrating caregiving impacts. This requires improving data collection, standardizing measurement approaches, and explicitly acknowledging these impacts within value assessment frameworks.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
HTA35
Topic
Health Technology Assessment
Topic Subcategory
Value Frameworks & Dossier Format
Disease
No Additional Disease & Conditions/Specialized Treatment Areas