Uncovering the Cost Landscape of Congenital Heart Disease (CHD) With a Life Course Perspective: A Systematic Review of Healthcare Utilization by Lesion Type and Age
Author(s)
Salma Pardhan, MPH, MA1, Philip Moons, PhD2, Zacharias Mandalenakis, PhD, MD3, Hanna Gyllensten, PhD1.
1Health and Care Sciences, Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden, 2Department of Public Health and Primary Care, KU Leuven University, Leuven, Belgium, 3Adult Congenital Heart Unit, Department of Medicine, Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden.
1Health and Care Sciences, Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden, 2Department of Public Health and Primary Care, KU Leuven University, Leuven, Belgium, 3Adult Congenital Heart Unit, Department of Medicine, Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden.
OBJECTIVES: To quantify and evaluate healthcare costs associated with CHD, stratified by lesion type and age, to inform equitable, patient-centered planning and identify critical gaps in cost reporting.
METHODS: Following PRISMA 2020 guidelines and PROSPERO registration (CRD42022206632), a systematic review was conducted using PubMed, CINAHL, and Scopus to identify peer-reviewed studies from 2000-2024 reporting original monetary cost data by lesion type and age. Only studies disaggregating pediatric (<18 years) and adult populations were included. Costs were inflated to 2024 international dollars (INT$) using OECD methods. Primary outcomes included lesion-specific costs; secondary outcomes included levels of care (primary-quaternary) and societal costs.
RESULTS: Sixty studies met inclusion criteria, primarily from the USA and China. Most reported costs focused on infants during surgical repair, with limited data for follow-up care or older pediatric groups. None explored costs across the full life-course. Lesions such as Tetralogy of Fallot and Hypoplastic Left Heart Syndrome had the highest reported inpatient costs. Only 27% of studies specified level of care, and fewer than 5% reported societal or personal cost data. Meta-analysis was feasible for select lesions revealing significant cost variation by age and setting. Importantly, no study followed patients across care transitions, making it infeasible to understand or predict total lifetime healthcare use or outcomes. This fragmentation limits efforts to design person-centered care pathways or plan resource allocation over the life-course.
CONCLUSIONS: Evidence on pediatric CHD costs is fragmented and focused on early interventions, failing to capture the long-term economic burden on patients and health systems. The absence transition care data undermines person-centered care models, especially those requiring integrated planning across life stages. Societal and out-of-pocket costs are rarely included, limiting relevance for patient-aligned decisions. A logic model is proposed to guide future research toward more comprehensive cost assessments, supporting equitable care pathways.
METHODS: Following PRISMA 2020 guidelines and PROSPERO registration (CRD42022206632), a systematic review was conducted using PubMed, CINAHL, and Scopus to identify peer-reviewed studies from 2000-2024 reporting original monetary cost data by lesion type and age. Only studies disaggregating pediatric (<18 years) and adult populations were included. Costs were inflated to 2024 international dollars (INT$) using OECD methods. Primary outcomes included lesion-specific costs; secondary outcomes included levels of care (primary-quaternary) and societal costs.
RESULTS: Sixty studies met inclusion criteria, primarily from the USA and China. Most reported costs focused on infants during surgical repair, with limited data for follow-up care or older pediatric groups. None explored costs across the full life-course. Lesions such as Tetralogy of Fallot and Hypoplastic Left Heart Syndrome had the highest reported inpatient costs. Only 27% of studies specified level of care, and fewer than 5% reported societal or personal cost data. Meta-analysis was feasible for select lesions revealing significant cost variation by age and setting. Importantly, no study followed patients across care transitions, making it infeasible to understand or predict total lifetime healthcare use or outcomes. This fragmentation limits efforts to design person-centered care pathways or plan resource allocation over the life-course.
CONCLUSIONS: Evidence on pediatric CHD costs is fragmented and focused on early interventions, failing to capture the long-term economic burden on patients and health systems. The absence transition care data undermines person-centered care models, especially those requiring integrated planning across life stages. Societal and out-of-pocket costs are rarely included, limiting relevance for patient-aligned decisions. A logic model is proposed to guide future research toward more comprehensive cost assessments, supporting equitable care pathways.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
EE740
Topic
Economic Evaluation, Health Technology Assessment, Patient-Centered Research
Topic Subcategory
Cost/Cost of Illness/Resource Use Studies
Disease
Cardiovascular Disorders (including MI, Stroke, Circulatory), Pediatrics