NEWCASTLE UPON TYNE, England -- Cerebral palsy does not impair children's perception of their quality of life unless they are in pain, researchers found.
NEWCASTLE UPON TYNE, England, June 29 -- Cerebral palsy does not impair children's perception of their quality of life unless they are in pain, researchers found.
Eight- to 12-year-olds reported a similar quality of life whether they had cerebral palsy or not, according to a study reported in the June 30 issue of The Lancet.
Allan F. Colver, M.D., of Newcastle University and Royal Victoria Infirmary here, and colleagues, found that pain, reported by 54% of children with cerebral palsy, was associated with worse quality of life in each of the areas analyzed, but type and severity of cerebral palsy impairments were not.
However, the study excluded the substantial proportion of children whose severe cerebral palsy impairments precluded self-reporting, noted Olaf Dammann, M.D., of Tufts-New England Medical Center and Children's Hospital in Boston, and T. Michael O'Shea, M.D., M.P.H., of Wake Forest University in Winston-Salem, N.C., in an accompanying editorial.
Nonetheless, Drs. Dammann and O'Shea wrote, "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."
The findings were particularly reassuring, they added, because a recent review article had suggested the opposite for adolescents with cerebral palsy.
But prior studies were typically small, used selective samples or parental reports, and looked only at activity- or family-related quality of life, Dr. Colver and colleagues said.
So, they analyzed quality of life in the larger Study of Participation of Children with Cerebral Palsy Living in Europe (SPARCLE).
Their analysis included 818 children ages eight to 12 with cerebral palsy in typically population-based registries in France, Ireland, Sweden, England, Northern Ireland, Denmark, and Italy.
Researchers visited these children and their parents at home and administered KIDSCREEN questionnaires to the 500 (61%) children able to report quality of life and pain. Most who could not self-report (93%) had an IQ below 70.
Their answers were compared to those of 3,219 children in the general population reported in a separate validation study of the questionnaire.
Children with cerebral palsy tended to have lower mean scores on physical well-being, autonomy, social support and peers and higher mean scores for school environment than controls, but the differences were not significant.
In a multivariable regression analysis comparing children with and without cerebral palsy, quality of life was similar except for the school environment domain in which children with cerebral palsy had significantly better scores (P?0.001).
Among children with cerebral palsy, impairment was not significantly associated with psychological well-being, self-perception, social support and peers, school environment, financial resources, and social acceptance (all P>0.01).
But in this multivariate analysis, inability to walk and limited or severely limited self-mobility was linked to significantly lower physical well-being (P=0.03 and P=0.002, respectively; P=0.005 for trend).
Moderate or severe intellectual impairment (IQ?70) was associated with poorer moods and emotions (P=0.001) and less autonomy (P=0.006).
Difficulty with or inability to speak was associated with poorer relationships with parents (P=0.001).
Pain in the prior week was reported by 54% of children with cerebral palsy and was linked to lower quality in every domain. But the only significant associations were:
"Despite these associations, impairments explained little of the variation in the quality of life of children with cerebral palsy," the researchers wrote.
In the final model, 3% of the variation in quality of life was explained by impairments, 7% by pain, and 8% by the region in which the children lived.
Furthermore, pain was not associated with specific impairments, possibly because children with the most severe intellectual impairments, who would be most likely to have other impairments, were excluded.
However, the researchers noted that because they did not study the source of the pain, it "could be similar to the general pains that all children experience."
Regardless, "every effort should be made to ask about and treat pain because it is common in children with cerebral palsy and is associated with reduced quality of life across all domains," Dr. Colver and colleagues said.
They added that the lack of overall difference in quality of life should not be surprising "from the perspective of a child whose sense of self from birth incorporates their impairment and who embraces growth, development, and living with the same excitement as most children."
The findings should be reassuring to parents whose children are diagnosed with cerebral palsy, the researchers said.
But the results also suggest "pity and sorrow should not be directed to disabled children" and support social and educational policies recognizing disabled children's right to participate fully in society, the investigators added.