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Quality of life similar among adolescents with, without cerebral palsy
Recently published data show adolescents with and without cerebral palsy reported similar quality of life, though adolescents with cerebral palsy reported lower quality of peer relationships.
Allan Colver, MD, of Newcastle University in Tyne, United Kingdom, and colleagues administered quality of life reports to children with cerebral palsy in 2004 and again in 2009 to assess trends in quality of life over time. Study participants were aged 8 to 12 years at first quality of life reporting and 13 to 17 years at second reporting. Quality of life was reported via KIDSCREEN, a 52-item European questionnaire that asks participants to assess quality of life during the previous week across ten domains. Items are scored on a five-point scale. There were 355 adolescents with cerebral palsy who self-reported at both time points. Reports from study participants with cerebral palsy were compared with reports from adolescents in the general population.
Overall, psychological difficulties and parenting stress were similar in childhood and adolescence, though participants reported more frequent pain as adolescents.
Adolescents with cerebral palsy had better quality of life compared with adolescents without cerebral palsy in five domains: moods and emotions, self-perception, autonomy, relationships with parents and school life. However, quality of life was lower among adolescents with cerebral palsy in the social support domain.
Quality of life scores on psychological well-being, self-perception, relationships with parents, school life and financial resources were not significantly associated with any type of impairment. Moods and emotions, autonomy, social support and peers, and social acceptance scores were significantly associated with at least one type of impairment, according to researchers.
No other impairments were associated with autonomy scores after controlling for walking ability. Similarly, no other impairments were associated with social support and peers quality of life when controlling for walking ability and IQ.
Moods and emotions scores were influenced by seizures in the previous year; impaired walking ability reduced autonomy scores; and impaired walking ability and an IQ <70 reduced social support and peers scores.
Quality of life in childhood was a predictor of quality of life in adolescence among all domains excluding financial resources. Childhood quality of life had the most significant impact on self-perception in adolescence: An increase of 10 points in childhood quality of life was associated with an increase of 2.8 points in adolescent quality of life (95% CI, 1.7-4.0).
Study participants who reported pain in childhood or adolescence had lower quality of life compared with other adolescents in all domains except social support and peers and financial resources. This was most evident regarding physical wellbeing, as adolescents who reported pain more than twice a week had a quality of life score 6.3 (95% CI, 3.8-9.0) points lower than those who reported no pain. Pain in childhood independently predicted lower quality of life in three domains in adolescence: psychological wellbeing, moods and emotions, and relationships with parents.
Quality of life was lower across five domains among adolescents in families with high parenting stress scores in childhood. An increase in parenting stress from childhood to adolescence predicted a small decrease in adolescent quality of life across all domains except self-perception and financial resources.
Children who reported psychological difficulties had lower quality of life in adolescence across all domains except for self-perception and relationships with parents.
“Individual and societal attitudes should be affected by the similarity we identified in the quality of life of adolescents with and without cerebral palsy, although young people with cerebral palsy need particular help with maintaining and developing peer relationships,” according to researchers.
In an accompanying editorial, Alexander H. Hoon, Jr., MD, and Elaine E. Stashinko, PhD, of Kennedy Krieger Institute in Baltimore, wrote these findings are encouraging due to the small difference in quality of life among the least- and most-able participants surveyed. In addition, the study points out modifiable areas that can have positive changes in the quality of life among children with cerebral palsy, including parenting stress, pain and psychological problems, they said.
“In children with cerebral palsy and other disabilities, developmental outcome is more than the result of medical treatment, and includes the child’s communication, coping, and problem-solving skills; educational opportunities; family adaption; and service delivery,” they wote. “Colver and colleagues’ report adds to the growing recognition that quality of life reflects the unique internal milieu and perceived possibilities of each child, with or without cerebral palsy.”
Disclosure: The researchers report no relevant financial disclosures.
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