Children with epilepsy and their parents have different perspectives of the impact of their illness on the child.

Assessing quality of life is important for measuring endpoints in clinical trials of new therapies in children, particularly those with epilepsy, a common chronic neurological condition that can negatively impact physical, social, psychological function. In many research trials parents are the ones reporting these outcomes. Measuring quality of life in children, however, can be complex due to the fact that parents may have different viewpoints than their children.

A recent NIH funded study, "Differences in child versus parent reports of the child's health-related quality of life in children with epilepsy and healthy siblings," published in Value in Health, found that children with epilepsy report quality of life that is comparable to that of their healthy siblings. In contrast, parents rate their children with epilepsy as having substantially worse quality of life than their healthy siblings.

Says principle author Dr. Christine Baca, "Children with epilepsy and their parents may have different, yet valuable, perspectives about the impact of this disease. We need to recognize both perspectives in research studies evaluating endpoints reported by patients, and also in clinical care, particularly as we develop support services targeted for children with epilepsy as they transition into adulthood."

The results and implications of this study will be discussed in detail in a future issue of Value in Health, the official journal of the International Society for Pharmacoeconomics and Outcomes Research.

Value in Health (ISSN 1098-3015) publishes papers, concepts, and ideas that advance the field of pharmacoeconomics and outcomes research and help health care leaders to make decisions that are solidly evidence-based. The journal is published bi-monthly and has a regular readership of over 5,000 clinicians, decision-makers, and researchers worldwide.

Source
ISPOR