| Title |
Cost analysis of financial, productivity, and informal care burdens in families raising children with congenital anomalies |
| Authors |
Vaitėnienė, Evelina Marija ; Jakaitienė, Audronė ; Murauskienė, Liubovė ; Utkus, Algirdas |
| DOI |
10.1186/s13561-026-00729-9 |
| Full Text |
|
| Is Part of |
Health economics review.. London : BioMed Central Ltd, Springer Nature. 2026, vol. 16, iss. 1, art. no. 19, p. [1-10].. eISSN 2191-1991 |
| Abstract [eng] |
Background: Congenital anomalies represent a major cause of childhood morbidity and disability, imposing long-term health, social, and financial challenges. While medical expenditures are relatively well-documented, evidence on the broader financial and social impact on families—particularly in Central and Eastern Europe—remains limited. Accordingly, this study aimed to quantify the economic burden associated with congenital anomalies from a caregiver perspective. Methods: A cross-sectional, questionnaire-based study was conducted in Lithuania in 2023 among 160 caregivers of children aged 5–18 years diagnosed with congenital anomalies. Participants were grouped by the number of affected organ systems to reflect the increasing disease complexity. Using standardized cost-of-illness methodology and both the human capital and opportunity cost approaches, we estimated annual direct medical and non-medical, indirect, and informal care costs. Results: Families experienced a substantial and multidimensional financial burden that intensified with disease severity. The annual indirect cost, mainly reflecting productivity losses, represented the largest component of the total economic burden, with a median of €7,566 overall and €12,965 in the most severely affected families. Out-of-pocket payments were also considerable, with a median of €2,040 per year; in the most severe group they exceeded 20% of monthly household income for 42% of families. The economic value of informal care represented a smaller yet meaningful portion of total costs (median €1,967), increasing more than fivefold between the mildest and most severe groups. Conclusions: Congenital anomalies place a substantial economic burden on families, extending far beyond healthcare expenses. These findings highlight the need for policies that improve financial protection, support caregivers’ labor market participation, and acknowledge the economic value of informal care within health and welfare systems. |
| Published |
London : BioMed Central Ltd, Springer Nature |
| Type |
Journal article |
| Language |
English |
| Publication date |
2026 |
| CC license |
|
