Struggles with emotional distress and sleep issues negatively impact the quality of life for both patients and parents living with Asperger's Syndrome.
Angelman syndrome (AS), a neurodevelopmental disease caused by reduced activity of the maternally-inherited UBE3A gene, has been the subject of a recent study conducted in Rotterdam. The research, titled "Child characteristics associated with child quality of life and parenting stress in Angelman syndrome," was published in the Journal of Intellectual Disability Research.
The study focused on clinical and life quality data from children with AS and their parents. It was found that AS is often associated with severe developmental delays, language problems, movement disorders, seizures, sleep issues, and behavioral or mood disturbances.
Interestingly, the study revealed that the only significant predictor of a greater impact of the child's AS on the parent was the sleep problems experienced by the child. Emotional and behavioral problems, along with sleep problems, were found to significantly predict lower life quality in children with AS.
The researchers used the Infant and Toddler Quality of Life Questionnaire to evaluate the patients' life quality, and the Parenting Stress Index to measure the parents' stress levels. Compared to healthy children, the AS youth and adolescents experienced greater than average amounts of sleeping issues and behavioral and emotional problems. These issues also had the greatest impact on parental caregivers' personal time, anxiety, and stress.
The results showed that the patients' HRQoL was classified as "exceptionally low" to "low average" relative to healthy children. The study further suggests that interventions to improve life quality and reduce parental stress should target these symptoms using a family-centered approach.
More than half of the children in the study had a deletion of the maternal UBE3A gene. The UBE3A gene's activity is particularly important for brain health. The researchers aim to contribute to better care and guidance of children with AS and their families by increasing knowledge on this important and understudied topic.
However, it is worth noting that the scales used in this study were not specifically tailored for Angelman patients. Future research should target more disease-specific metrics to gain a more comprehensive understanding of the impact of AS on the lives of children and their parents.
In conclusion, this study provides valuable insights into the challenges faced by children with AS and their parents. It underscores the need for further research and targeted interventions to improve the quality of life for these individuals and their families.
