Measuring economic burden in families of individuals with Angelman Syndrome in Poland: a caregivers’ survey

Angelman Syndrome (AS) is a rare neurogenetic disorder characterized by severe intellectual disability, seizures, and motor and speech impairments, requiring lifelong, intensive care. Although caregivers of individuals with AS often face reduced quality of life and substantial emotional and financial strain, little is known about the cost-of-illness in Poland. To address this gap, we conducted a cross-sectional study in collaboration with the Foundation for Angelman Syndrome Therapeutics Poland (FAST Poland). An anonymous web-based survey was completed by 85 parents of individuals with AS to assess the 12-month financial burden of caregiving, including healthcare utilization, non-medical expenses, caregiver-related health costs, and broader socioeconomic impacts. The average annual out-of-pocket cost per household was $69,511, which far exceeded the average public reimbursement of $46,928. Major private expenditures included therapy and rehabilitation ($7,836), non-reimbursed rehabilitation camps ($4,451), and medical equipment ($2,637). Income loss due to caregiving averaged $31,809 per household, contributing significantly to the overall burden. Psychological support and medication for caregivers generated additional costs, often paid entirely out of pocket. Spearman’s correlations revealed that younger patients incurred higher hospitalization and private rehabilitation expenses, while older individuals required more home modifications. Caregiving averaged 89.4 h per week, with minimal professional or informal assistance. Despite most families receiving public support, it did not offset the full economic impact, particularly indirect costs such as reduced employment. The findings underscore the chronic, high-cost nature of AS caregiving in Poland, marked by insufficient systemic support and reliance on family-provided, unpaid care. AS imposes a major financial burden on families, as out-of-pocket expenses and income loss surpass public aid. These findings underscore the urgent need for improved systemic and policy-level support for caregiving.