New knowledge about the quality of life in Angelman patients published!
ENCORE researcher Doesjka Hagenaar recently published her study in which she investigates the quality of life of Angelman patients.
For this article, data from 73 children with Angelman syndrome (2 to 18 years) who visited the outpatient clinic of the ENCORE Expertise Center for regular care were used. Their parents completed questionnaires about their child's quality of life and the stress they experience in raising children. We also conducted various studies on the child itself.
The study showed that there is a link between having behavioral problems and a lower quality of life in children with Angelman syndrome, and in particular internalizing problems (such as withdrawal, anxiety and sadness). Having the deletion genotype and older age were also related to a lower quality of life in this group of children. Furthermore, both behavioral problems and sleep problems were related to parental stress and the impact the syndrome has on the parent. We saw no (statistically significant) link between cognitive development level, autism symptoms, and epilepsy with quality of life or parental stress.
These results imply that if one wants to improve quality of life and parental stress in Angelman syndrome, interventions can focus on behavioral problems and sleep problems.
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