Journal de neurologie et médecine pédiatriques

The Factors Most Important for Quality of Life in Children and Adolescents with Cerebral Palsy

Abstract

Brian Piazza, William Hennrikus, Ryan Schell, Douglas Armstrong and Kristine Fortuna

Aim: This study’s purpose is to determine what themes patients with Cerebral Palsy (CP) rate most highly for importance in their quality of life. Additionally, we aim to determine and compare the parent’s perception of quality of life measures for their child with CP.

Methods: Thirty one patients with CP and their guardians were administered a 50 item questionnaire.

Results: When comparing the quality of life ratings of patients with CP to parents, five measures were statistically significant. Patients thought that playing video games (p=0.039), using the TV (p=0.004) and how their physical disability affects their appearance in comparison to their peers (p=0.018) were more important than their parents did. Parents thought their child’s future financial independence (p=0.017) and access to healthcare (p=0.008) were more important than their adolescent children did.

Interpretation: Parents can accurately predict a few of the quality of life measures important to their child such as eating and drinking independently and going to school. However, disparities exist in many psycho-social domains. A better understanding of the importance of quality of life themes for patients with CP is important because it helps to direct care that can both take advantage of and improve what our patients feel is most important.