Quality of life of young people with CP

I recently came across an article published in the The Lancet on quality of life (QoL) of children and teenagers with CP. It may not be directly related to speech therapy in young people with CP, but it makes for an interesting reading nonetheless. Allan Clover from Newcastle University in England together with colleagues from six further European countries provide a glimpse into the wellbeing of teenagers with CP. 

They carried out a large scale study to discover how best to promote quality of Life of Children with CP in Europe. It is called SPARCLE, which stands for the Study of PARticipation of Children with CP Living in Europe. Across Europe more than 800 8-12 year old children took part in the project. About 5 years later the very same children - now teenagers - were asked about their wellbeing again. The great thing about seeing the same children is that the researchers can look at long-term development of QoL, and whether some problems in childhood can predict QoL for teenagers with CP. The researchers also compared the teenagers’ answers with that of their peers.

How was the data collected? The researchers went to visit the teenagers at home. They also spoke to their parents. The teenagers filled in a questionnaire called KIDSCREEN. It measures QoL from their view looking at physical, mental and social wellbeing. Their parents filled in a strengths and difficulties questionnaire.

What did they find? The views of about 430 children were analysed. Goods news first: the teenagers with CP enjoy by and large the same QoL as their peers. Only social support and peer relationships stood out. It seems that the teenagers find it a bit harder to develop new friendships. 

The not so good news: the teenagers reported pain more often than they did when they were children. The researchers also found that pain as well as seizures led to lower wellbeing ratings overall. The researchers also found that walking ability predicted quite well how (in)dependent the children felt at this stage in life.

What can the findings tell us? The authors of the study were happy to see that QoL reported by the teenagers is not really different from that of their peers. They also think that the teenagers might need help to form new friendships; and that more research should be done to find out why peer relationships seem to get worse for many young people with CP…I think that it would be very worthwhile to find out whether communication is one of the areas that can be supported to improve their relationships.

Colver, A. et al. (2015). Self-reported quality of life of adolescents with cerebral palsy: a cross-sectional and longitudinal analysis. The Lancet, 385, 705-716.