Quality of Life
Children with CP experience limitations in mobility and are at risk for lower participation in leisure and social activities, and therefore, there is a perception that they have a lower quality of life (QOL).
The WHO defines QOL as “an individual’s perception of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns (218).” QOL is, by definition, subjective, yet most of the literature to date looking at QOL in CP has used data from parents rather than the children themselves. The literature also has tended to focus on functional skills and their role in QOL, and little attention has been paid to other important contextual factors such as environment and family functioning, which are felt to be important determinants of QOL (219).Recent literature has begun to focus on the child’s self-report of QOL and contextual factors outside of physical functioning. In a population-based study of 217 children with CP ages 6 to 12 years, the authors found that the QOL was highly variable, but about half experienced a QOL similar to typically developing children (219). Children were less likely to rate themselves low for psychosocial well-being when compared to their parents’ report. Functional limitations were good indicators for physical but not psychosocial wellbeing, and family functioning, behavioral difficulties, and motivation were all found to be important predictors of social-emotional adaptation.
Two more recent studies of self-reported QOL found no difference in QOL between children with CP and typically developing children (220,221). One of these studies was a large population-based study of 1,174 children between 8 to 12 years in Europe (220), and the other looked at a convenience sample of 81 children 10 to 13 years with GMFCS Level I-III (221). The finding that many children perceive their QOL as similar to their peers is encouraging and suggests that children who grow up with an impairment incorporate it into their sense of self from birth and it is possible for them to embrace growth, development, and living with the same excitement as most children (220). Future large population-based studies would be helpful to validate these findings and to look more closely at the contextual factors that may affect QOL. Longitudinal studies would also be helpful to determine potential changes in QOL over time.