A new study published in The Lancet claims that adolescents with cerebral palsy – the most common motor disability in childhood – report having a similar quality of life to those without the disorder.
The research team, led by Allan Colver, professor of community child health at Newcastle University in the UK, says their findings should positively influence society’s attitudes toward individuals with cerebral palsy.
Cerebral palsy is a neurological disorder that affects 1 in 323 children in the US. It is caused by brain abnormalities that impair body movement and muscle coordination. Onset usually occurs in infancy or early childhood.
“Young people with cerebral palsy are often studied as exemplars of children with disabilities because its severity, patterns of motor involvement, and associated impairments – such as communication, intellectual ability, and epilepsy – vary widely and persist across the life course,” say the researchers.
“Promotion of a good quality of life is important for all but might be neglected in young people with disabilities due to an emphasis on trying to remedy their impairments.”
For the first time, Prof. Colver and his team set out to track the quality of life of individuals with cerebral palsy from childhood to adolescence.
- Spastic cerebral palsy – characterized by increased muscle tone – accounts for around 80% of cerebral palsy cases
- In 2008, 30.6% of children with cerebral palsy had limited or no walking ability
- Many children with cerebral palsy have at least one coexisting medical condition, such as epilepsy or autism.
The researchers selected 431 adolescents aged 13-17 years from population-based cerebral palsy registers in nine regions of Europe.
The participants were asked to self-report their quality of life through a questionnaire called KIDSCREEN. This is a European survey that investigates 10 life quality areas over the past week, including physical well-being, moods and emotions, psychological well-being, self-perception, autonomy, relationships with parents, school life and self-perception.
The researchers note that 355 of the adolescents had also completed the KIDSCREEN questionnaire at ages 8-12 years.
All completed questionnaires were compared with those of children and adolescents among the general population who did not have cerebral palsy.
The team also investigated how secondary morbidities caused by cerebral palsy, such as parental stress, pain and psychological issues, influenced quality of life in adolescence.
Results of the analysis revealed that the overall quality of life reported by adolescents with cerebral palsy was similar to that reported by adolescents without the disorder.
Furthermore, the team found that quality of life among adolescents with cerebral palsy was actually better than that of those among the general population in five areas: self-perception, autonomy, moods and emotions, relationships with parents and school life.
The researchers note that it was only in the areas of social support from peers that adolescents with cerebral palsy reported lower life quality.
Commenting on these findings, Prof. Colver says:
“Our results are encouraging. Across 10 different areas of life, adolescents with cerebral palsy only ranked their quality of friend and peer relationships as on average lower than adolescents in the general population, challenging the widespread perception that adolescents with disabilities have unhappy, unfulfilled lives.”
The researchers found that adolescents with cerebral palsy who had more severe motor impairments reported lower quality of life in three areas: moods and emotions, autonomy and social support from peers.
Pain experienced in childhood and adolescence, however, reduced quality of life in eight areas for those with cerebral palsy, and high parental stress predicted low adolescent quality of life.
Prof. Colver says their findings indicate that children with cerebral palsy require early interventions to reduce pain and parental stress. “Attention should be directed to helping children with cerebral palsy, especially those who are more severely impaired, to maintain friendships with peers, and to develop new friendships as they move into adolescence,” he adds.
In an editorial linked to the study, Alexander Hoon and Elaine Stashinko, both of the Kennedy Krieger Institute in Baltimore, MD, say that Prof. Colver and his team are to be “commended for their work in placing quality of life at the center of the thoughts of all interested in promoting the well-being of people with cerebral palsy.”
Earlier this year, Medical News Today reported on a study published in The BMJ suggesting that the cause of cerebral palsy could be inherited.