"In this regard, parental perception of their epileptic child may be distorted because of their perception that they have a child that is 'sick,'" Baca said. "Such a distortion could lead to an underestimate of the child's quality of life."

Also, the concerns of a child with epilepsy may differ from those of a parent.

"Children and parents may draw on different values and perspectives to evaluate quality of life and may not be aware of these different perspectives," Baca said.

Recognizing both perspectives is important in assessing outcomes in research studies, Baca noted, particularly in clinical trials evaluating anti-epileptic medications, and also in trials measuring outcomes after epilepsy surgery. Additionally, quality-of-life evaluations are an essential part of developing clinical disease-management programs that provide comprehensive treatment and education for children with epilepsy and families. Lastly, Baca said, understanding these potentially different, yet valuable, perspectives is important for developing appropriate support services targeted for children as they make the transition into adulthood.

Source: University of California - Los Angeles