Most children aged 8-12 years with cerebral palsy will have similar quality of life (QoL) to other children. The findings should guide social and educational policy to ensure that disabled children participate fully in society, conclude authors of an Article published in this week’s edition of The Lancet.
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 that for children with cerebral palsy, type and severity of impairments did not affect QoL for in six KIDSCREEN 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 catgories. Children with poorer walking ability had poorer physical wellbeing; children with intellectual impairment had lower moods and emotions and less autonomy, and children with speech difficulty had poorer relationships with their parents. Further they found that pain reduced children’s 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 authors say: “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 by saying that there is widespread acceptance of the need for disabled children to be integrated fully into society. They say: “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.”
In an accompanying Comment, Dr Olaf Dammann, Department of Pediatrics, Tufts-New England Medical Center, Boston, USA and Dr Michael O’Shea, Department of Pediatrics, Wake Forest University School of Medicine, Winston-Salem, North Carolina, USA, say: “The efforts of Dickinson and colleagues to understand quality of life in children with cerebral palsy are commendable. Their findings offer both reassurance to parents of children with this disorder and potential strategies to clinicians seeking to improve the quality of life for affected children.
“Moreover, in their study Dickinson and colleagues provide food for thought for clinicians who offer guidance to parents of newborn babies at risk of cerebral palsy.”
Journal
The Lancet