Abstract:We showed that QoL was relatively good in childhood and adolescence. The Finnish version of the CP QOL-Teen questionnaire was an appropriate clinical tool for assessing QoL.
“…Böling et al. report the findings of their study on the quality of life of Finnish adolescents with CP, which indicated that it continued to be relatively good. …”
Section: Changing Pattern Of Cerebral Palsy In Swedenmentioning
“…Böling et al. report the findings of their study on the quality of life of Finnish adolescents with CP, which indicated that it continued to be relatively good. …”
Section: Changing Pattern Of Cerebral Palsy In Swedenmentioning
“…In terms of the stability of quality of life assessment in longitudinal samples, both Rapp et al [ 27 ] in the international SPARCLE cohort, as well as Böling et al [ 28 ] using a Finnish sample, provided evidence using longitudinal studies that QoL in young participants with CP displays stability from childhood to adolescence, despite a parallel decrease in adolescents with CP and from the general population in several domains. Also, in their comparative cross-sectional study of CP and healthy controls grouped into children, adolescents and emerging adults (age range: 6–30 years), Riquelme et al [ 29 ] showed that age-group had no significant influence on QoL for individuals with CP.…”
Background
While evidence concerning Quality of Life (QoL) in youth with cerebral palsy (CP) in comparison to the general population has been accumulating, there is a lack of studies exploring differences on a wider range of positive and negative mental health outcomes in emerging adults.
Methods
This binational case control study is part of the SPARCLE cohort study on QoL and participation of youth with CP. QoL (WHOQOL-BREF), depression (PHQ-9), anxiety (GAD-7) and self-efficacy (GSE) were assessed in 198 emerging adults with CP and 593 emerging adults from the general population, matched for country of residence, age and gender. ANCOVAs with impairment and pain as covariates were run.
Results
Similar levels of QoL were found in both samples, except for the environmental domain, with better QoL for emerging adults with CP compared to the general population. There were significant descriptive differences regarding depression with worse levels in the CP sample, however, also worse levels of self-efficacy. Pain as a covariate had a significant negative impact on all measures, leading to poorer self-efficacy while worsening depression and anxiety; impairment had a significant worsening impact on physical QoL and self-efficacy only.
Conclusion
Similar expressions of mental health outcomes in emerging adults with CP and the general population indicate the high adaptive capability of emerging adults with CP.
“…For example, “access to services” plays a different role throughout the world. 13 14 18 19 20 23 24 31 In our cohort, this resulted in a high number of missing values. Furthermore, the question “how happy are you?” in the domain “family health” may not aim in the same direction as other questions in the domain, which had a negative effect on Cronbach's α and, therefore, on internal consistency.…”
Section: Discussionmentioning
confidence: 96%
“…For example, "access to services" plays a different role throughout the world. 13,14,[18][19][20]23,24,31 In our cohort, this resulted in a high number of missing values. Furthermore, the question "how happy are you?"…”
Section: Discussionmentioning
confidence: 99%
“…Furthermore, pain, in general, is difficult to evaluate by another person. 19 31 Moreover, it became apparent in the process of the study that the question “how much discomfort does your child experience?” was not translated appropriately. This was corrected by an adequate retranslation and may now be used in this form.…”
The aim of the study was to determine the psychometric properties of the German version of the Cerebral Palsy Quality of Life Questionnaire for Children and Adolescents (CP QOL-Child and -Teen). It is a condition-specific questionnaire with a self-report version, measuring well-being rather than ill-being, which differs from existing measurement methods. Fourteen children (9–12 years) and 64 caregivers (4–12 years) answered the child questionnaire. Twenty-one adolescents and 26 caregivers (all adolescents 13–18 years) replied to the teen version. Functioning was categorized by the Gross Motor Function Classification System. For CP QOL-child internal consistency (Cronbach's α) ranged from 0.58 to 0.88 and for CP QOL-Teen from 0.68 to 0.95. Test–retest reliability after 2 to 4 weeks ranged between 0.75 and 0.94 in children's version and 0.89 and 0.96 in teen's version. Correlation with well-established generic KIDSCREEN-10 questionnaire was moderate to strong. The German versions of CP QOL-Child and -Teen are appropriate tools for assessing the quality of life of children and adolescents with cerebral palsy in the German-speaking population.
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