The economic impact of caregiving for individuals with Angelman syndrome in the United States: results from a caregiver survey.

ABSTRACT:

Background

Angelman syndrome (AS) is a rare neurogenetic disorder characterized by persistent cognitive and functional impairments that necessitate lifelong care. Caring for individuals with AS leads to substantial household costs, as well as impacts on work productivity, leisure time, and quality of life for caregivers. The economic value of these impacts in the United States (US) has not been well studied. We conducted a survey of US caregivers for persons with AS to quantify the annual economic impact of caregiving. Information on AS-related economic impacts was gathered, including household costs, employment impacts, leisure time loss, and caregiver healthcare costs. The survey did not gather information on direct medical care costs borne by healthcare insurers or other economi

SUBMITTER: Jarvis J 

PROVIDER: S-EPMC11846284 | biostudies-literature | 2025 Feb

REPOSITORIES: biostudies-literature