Survival at 19 years of age in a total population of children and young people with cerebral palsy

Aim: The aims were to investigate survival of children with cerebral palsy (CP) and to search for modifiable factors that influence survival in CP.

Method: The total population of children with CP in southern Sweden born between 1990 and 2005, and followed from 1994 to 2010 comprised 718 children. The study included 708 of these children (297 females, 411 males) participating in a secondary prevention programme. CP subtype, Gross Motor Function Classification System (GMFCS) levels, and comorbidities were described. Kaplan-Meier survival curves were plotted. The following factors were investigated using Cox regression analysis: GMFCS level (co-varies with overall health), size of health care catchment area, gastrostomy feeding, and sex.

Results: The estimated survival at 19 years of age was 60% in children with the most severe gross motor limitations (GMFCS level V). Death occurred throughout childhood. All children at GMFCS level I or II, and 96% of the whole CP population, survived. The mortality risk in childhood CP was three times higher in catchment areas that covered small populations than in areas with a large population. Gastrostomy feeding was associated with a ninefold increased risk of dying, regardless of GMFCS level and catchment area.

Interpretation: Fragile children with CP, as indicated by GMFCS level V and gastrostomy feeding, had the lowest chance of surviving childhood. Health care catchment area seemed to influence survival rate.