Children with heart devices and their parents struggle with quality of life

Researchers at the Cincinnati Children's Hospital Medical Center studied 173 children with either a pacemaker (40 patients) or implanted defibrillator (133 patients) to assess their quality of life compared to other children with congenital heart disease and to healthy children.

The children, ages 8 to 18 years old, and their parents completed quality of life questionnaires.

Compared with healthy children and their parents, children with heart devices and their parents reported significantly lower quality of life scores. Likewise, their scores were also lower than those of children with mild congenital heart disease. However, their quality of life scores were similar to those for children with more severe heart disease but no device.

For children, self-perception, self-worth, and athletic capability affected quality of life.

For parents, their child's behavior was the biggest factor related to quality of life.

Also, children with an implantable defibrillator tended to have lower quality of life scores than those with pacemakers.

"These findings should encourage us to consider the negative impact of devices, particularly defibrillators, on pediatric patients; and to develop strategies to mitigate these effects," said Richard J. Czosek, M.D., study author and assistant professor of pediatrics at the Cincinnati Children's Hospital Medical Center, Heart Institute in Ohio. "Whether these effects on quality of life can be reduced through the use of psychotherapy needs to be assessed."

Co-authors are William J. Bonney, M.D.; Amy Cassedy Ph.D.; Douglas Y. Mah, M.D.; Ronn E. Tanel, M.D.; Jason R. Imundo, M.D.; Anoop K. Singh, M.D.; Mitchell I. Cohen, M.D., Christina Y. Miyake, M.D.; Kara Fawley, B.S.; and Bradley S. Marino, M.D.