Health, functioning, and participation of adolescents and adults with cerebral palsy: A review of outcomes research

Abstract

With medical advances, more individuals with cerebral palsy (CP) syndromes who reside in developed countries are surviving to adolescence and adulthood. However, there continues to be a paucity of research examining long-term health, functional activities, and participatory outcomes over their life-course. This article reviews the current literature assessing adult outcomes for individuals with CP within the framework of the International Classification of Functioning (ICF), Disability, and Health model of enablement. Preliminary data over the last decade indicate that among adults with cerebral palsy without intellectual disability, 60-80% completed high school, 14-25% completed college, up to 61% were living independently in the community, 25-55% were competitively employed, and 14-28% were involved in long term relationships with partners or had established families. These outcomes occurred with biomedical advances in the management of spasticity, deformity, and medical co-morbidities, as well as with concurrent policy initiatives to increase access to a continuum of habilitative and education services. Although we have incomplete population data to inform comprehensive life-course planning, there are opportunities to create clinical and translational community networks with improved measures of functioning and participation that can better inform us about the factors influencing lifespan development of people with CP.