Participation and quality of life in adults with cerebral palsy

Methods

The study comprised three phases: 1) a systematic literature review, 2) a cross-sectional survey of participation and QoL in adults with CP and non-disabled adults and, 3) longitudinal analysis using newly collected data alongside earlier UK data from childhood and adolescence. In phase two, adults with CP aged ≥24 years and resident in Northern Ireland were recruited alongside a comparison group of non-disabled adults. <br>Results: 187 participants were recruited, including 43 adults with CP and 144 non-disabled adults.

Significant differences were found in participation and QoL across domains of education, employment, housing location, living arrangements, and intimate relationships. Adults with CP reported greater participation difficulty in all domains, yet reported higher levels of autonomy compared to non-disabled adults. Overall, differences in QoL between the groups were less evident, although individuals who were employed and had a higher education degree reported lower environmental QoL.

Longitudinal analyses in Phase Three revealed a positive trajectory of participation and QoL from childhood to adulthood, although a significant increase in pain frequency and intensity was identified. This study highlights the complex experience of living with CP and the disparities that exist with non-disabled adults, and provides important recommendations for policy and practice.