Adults with cerebral palsy and functional decline: A cross-sectional analysis of patient-reported outcomes from a novel North American registry
Prepared by: Prue Morgan
Study type/population: This cross-sectional study collected patient-reported outcome data from the Functional Change Survey Bundle from adults (>18 years) with cerebral palsy (CP) enrolled in the Cerebral Palsy Research Network Community Registry from April 2019 to March 2022.
Key findings: Of the 263 adult participants, 60% (n=158) reported decline in gross motor function since childhood. Prevalence of decline varied significantly by Gross Motor Function Classification System (GMFCS) level, and was most frequently experienced by participants with GMFCS Level III and IV. Hand function decline and communication decline were also reported (30% and 12% respectively), however neither differed by GMFCS level. All types of decline increased with age. The prevalence of gross motor decline did not significantly differ between those with spastic CP and those without spastic CP. Individuals reporting any functional decline reported significantly lower levels of physical function and satisfaction in participation, and significantly higher levels of depression, fatigue, sleep disturbance, pain interference and pain intensity compared to those without functional decline.
Translation to practice: Many people with CP experience decline in gross motor function which is more frequent in those who are non-ambulatory (GMFCS Level IV), or ambulatory with an assistive device (GMFCS Level III). Decline in hand function and communication ability was also reported, highlighting the importance of evaluating all domains of function (gross motor, hand and communication) across the lifespan, regardless of GMFCS level. Lifespan neurologic surveillance is also warranted.