The objective of this study was to evaluate whether prosthetic fitting before the age of one year is associated with better outcomes in children with unilateral congenital below-elbow deficiency compared to children fitted after the age of one. Twenty subjects aged 6-21 years were recruited (five prosthetic users and 15 non-users). The Child Amputee Prosthetics Project-Prosthesis Satisfactory Inventory (CAPP-PSI) and the Prosthetic Upper Extremity Functional Index (PUFI) were used to assess patient satisfaction and functional use of the prosthesis. Videotapes were used to assess motor performance. Initial prosthetic fitting before one year of age was related to use of a prosthesis for at least four years. Age at first fitting was not associated with satisfaction with the prosthesis, functional use of the prosthesis or motor skills. Discrepancies between ease of performance with prosthesis and usefulness of the prosthesis as well as between capacity and performance of activities were found. The video assessments showed impaired movement adaptation to some tasks in six subjects. In conclusion, early prosthetic fitting seems to have a limited impact on prosthesis use during later stages of life.

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Background: The purpose of this study was to evaluate the longitudinal validity of the Dutch version of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD), a health-related quality of life instrument for nonambulatory children with severe motor disabilities and accompanying disorders. Methods: The effect of two interventions, Botox injections in the hip region and percutaneous endoscopic gastrostomy, was followed over time. Caregivers (n = 38) of nonambulatory children (26 boys, 12 girls; mean age: 9 years, 5 months [4 years, 9 months]) with severe disabilities completed the questionnaire prior to the intervention, at 3 months and 6 months follow up. Seven a priori hypotheses were formulated. Longitudinal validity was analysed by a paired t test of the pre-post scores and correlation analysis between the change-scores and two external criteria: a caregivers' perceived change in health-related quality of life of the child questionnaire and a general health-related quality of life instrument. Results:The results reported here follow completely the pattern we hypothesized for four analyses and partially in the remaining three. In the Botox group, the mean change-score at 3 months was 6.9 points (p < 0.05), which exceeds the minimal clinically important difference of 5.8 points. At 6 months, the effect was diminished to 4.5 points, in line with the temporary effect of Botox. There were moderate positive correlations between the change-scores and an external criterion (Spearman's rho: 0.46-0.58). Conclusions: This study indicates that the CPCHILD Dutch version has sufficient longitudinal validity statistically and clinically in nonambulatory children with severe disabilities.