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Quality of Life in Angelman Syndrome: A Caregivers' Survey
Journal article   Peer reviewed

Quality of Life in Angelman Syndrome: A Caregivers' Survey

Nancy Y. Xia, Mitzie L. Grant, Nicholas L. Benjamin and Ignacio Valencia
Pediatric neurology
Sep 2023
DOI: https://doi.org/10.1016/j.pediatrneurol.2023.08.033

Abstract

Angelman Syndrome Cannabidiol Quality of Life (QOL) Survey
A web-based survey was distributed to caregivers of individuals with Angelman Syndrome (AS) to characterize motor function, cannabidiol (CBD) use, and factors affecting quality of life (QOL). One hundred eighty three individuals with AS (mean age of 19.4 ± 13.4 years; 48.1% female): 72% had sleep problems, 80% had seizures, and 32% had ≥1 ED visits in the previous year. Eighty-eight percent were ambulatory (with or without assistance), and half experienced falls, 10.4% resulting in serious injury. Caregivers reported physical therapy, anti-seizure medication, CBD, and clonidine as helpful. Inability to walk, falls/drops, sleep problems, and seizures significantly affected QOL (p<0.002, <0.001, <0.001, p=0.001 respectively). QOL was not influenced by gender, distance to the hospital, or genetic abnormality. These findings suggest that seizures are the tip of the iceberg. Use of a brief, valid screening tool can assist providers with addressing issues of primary concern to caregivers of individuals with AS.

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