Hope and surprises in new report on children with Cerebral Palsy

A REPORT IN this week's edition of The Lancet which finds that children with Cerebral Palsy have a similar quality of life to other children. Behind the report is Professor Allan Colver of Newcastle University.

In the biggest study of its kind 500 children aged between eight and 12 described their quality of life across 10 categories. The findings should "ensure their rights as citizens, rather than as disabled children, to participate in society as fully as other children" and should be used to guide social and educational policy, the report asserts.

Case studies include Nathan, a 10 year old from Gateshead. Nathan was diagnosed with cerebral palsy at four months. At that point mum Julie Johnson found it hard to find information about the condition and was given a very negative picture. However, she has found that cerebral palsy hasn't held Nathan back.

"I treat Nathan and his brother the same and I have found that both of them rise to their own challenges, which they overcome. Nathan has problems with his left hand but quite simple steps have enabled him to attend a mainstream school. He is assessed every six months and at the moment has a special ruler and board which stop the paper slipping and help him in the classroom. He's an active, happy child."

Nathan says "I like all my teachers and have a big group of friends at school. I have a special board which helps me write neater. At playtime we play tag and football." Nathan is also a keen swimmer, winning medals for his back crawl.

Helping with Nathan's physiotherapy has also inspired Julie to change career from hairdresser to physiotherapist.

Rhonda is an 18-year-old Cerebral Palsy sufferer from Newcastle who attends a local special school. Although she has some difficulties with speech, she is said to have “a fantastic, positive attitude”.

Most children aged eight-12 years with cerebral palsy will have similar quality of life (QoL) to other children, the report states. The findings should guide social and educational policy to ensure that disabled children participate fully in society.

Professor Allan Colver, Sir James Spence Institute, Newcastle University, Royal Victoria Infirmary, Newcastle, UK and colleagues selected 1,174 children with cerebral palsy in seven European Countries, of which 818 participated in the study. Of these, 318 with severe intellectual impairment could not self-report (and will be subject to a separate study later); but 500 children self-reported their QoL using KIDSCREEN, an instrument which assesses quality of life across 10 categories.

The researchers found the children’s QoL was sustained across six categories: psychological wellbeing, self-perception, social support, school environment, perception of financial resources and social acceptance.

However they found that specific impairments were associated with poorer QoL in four categories. Children with poorer walking ability had poorer physical wellbeing. Those with intellectual impairment had lower moods and emotions and less autonomy. And children with speech difficulty had poorer relationships with their parents. Pain, it was found, reduced QoL across all categories.

The authors say: "Whereas specific domains of QoL with cerebral palsy are associated with specific impairments, QoL on most aspects of life is not associated with impairments and is therefore likely to be determined largely by social and environmental factors, although these might differ between children with cerebral palsy and those with no disability."

From the point of view of a non-disabled adult, it may seem surprising that children with cerebral palsy view their QoL as similar to children in the general population. However from the child's perspective, their impairment is incorporated in their sense of self from birth, and they embrace growth, development and living with the same excitement as non-disabled children.

The report authors add, "Parents can be upset when their child is diagnosed with cerebral palsy, but they can now be reassured that most children with cerebral palsy who are capable of providing information when 8-12 years old experience similar QoL to that of other children their age."

They conclude: "The change now needed concerns attitudes. Pity and sorrow should not be directed to disabled children because our findings indicate they experience most of life as do non-disabled children. Therefore, maximum effort is needed to support the social and educational policies that recognise the similarity between the lives of disabled children and those of other children, and that ensure their rights as citizens, rather than as disabled children, to participate in society as fully as other children."