Development and sensibility assessment of a health-related quality of life instrument for adults with severe disabilities who are non-ambulatory

Background Insight in health-related quality of life (HRQoL) of adults with severe disabilities who are non-ambulatory is important, but a measure is lacking. The aim was to develop a HRQoL measure for this group. Method The developmental process consisted of the adaptation process of a proxy HRQoL measure for children with severe disabilities who are non-ambulatory and the assessment of the sensibility of the developed instrument. A three-step process was used: focus groups, e-survey and interviews. Results In total, 72% of the items remained unchanged. Three new items and one element to an existing item were added. In ten items, the formulation of the items was adapted to the target group. Concerning the sensibility, respondents suggested minor changes to the instruction and the output scales. Conclusions This study has yielded a proxy HRQoL measure for adults with severe disabilities who are non-ambulatory, the CPADULT, with good sensibility

Made to measure: development and validation of the CPCHILD-DV and the CPADULT, health-related quality of life measures for people with severe disabilities who are non-ambulatory

This thesis describes the development and validation of two instruments that measure health-related quality of life of people with severe motor and intellectual disabilities who are non-ambulatory Health-related quality of life is considered a good indicator to identify needs of a person and to determine whether the support or treatment provided is meaningful. For people with severe motor and intellectual disabilities who are non-ambulatory, it is nearly impossible to complete a questionnaire themselves. Therefore, the assessment is done by parents, relatives or professionals. For children, the CPCHILD-DV has been developed. The CPCHILD, developed in Canada, has been translated and adapted for the Dutch situation. The questionnaire consists of six domains: 1 personal care/daily activities; 2 sitting, standing & moving; 3 well-being & emotions; 4 communication & social interaction; 5 health; 6 overall quality of life. The CPADULT was developed using the CPCHILD-DV as a starting point and adapted for an adult target group. The two measurement instruments were developed in close collaboration with practitioners. These new instruments were then assessed for their quality. The studies showed that the CPCHILD-DV and the CPADULT have sufficient reliability and validity to be used as outcome measures. The CPCHILD-DV and CPADULT are available at no cost after registration on the website: www.cpchild.n

Investigation of light In isotopes

Levels and transitions in /sup 109/In have been studied in in-beam gamma - and e/sup -/-spectroscopy using the reaction /sup 107/Ag( alpha ,2n). Some of these levels can be explained with a hole-core coupling model. (11 refs)

The influence of mechanically weak layers in controlling fault kinematics and graben configurations : Examples from analog experiments and the Norwegian continental margin

Fault systems in extensional basins commonly display geometries that vary with depth, reflecting depth- and lithology-dependent mechanical strength. Using an experimental approach, we investigate this relationship by deploying physical analog models with stratified sequences consisting of brittle–ductile (sand–silicone polymer) sequences subject to single and polyphase deformation. The experiments were used as analogs for a sandstone sequence interlayered by beds of evaporates or overpressured or unconsolidated mudstone in nature (the latter being representative of decollement horizons). Experiments (series 1 [S1]) using homogeneous and stratified quartz and feldspar sand produced asymmetric, composite single grabens with diverse fault frequencies and fault styles for the graben margin faults. For the mechanically stratified experiments with one decollement level (series 2), contrasting graben configurations were produced, in that the lowermost sequence was characterized by graben geometries of similar type to that of the S1 experiments, whereas the sequence above the decollement was characterized by large fault blocks, delineated by steepened or oversteepened faults. The experiments with two decollements (series 3) were displayed similarly but included graben geometries that widened upward, with each level being characterized by independent fault systems. The results can be used to explain strata-bound fault patterns and depth-dependent extension as seen in several places along the Norwegian continental margin and elsewhere

Longitudinal validation of the Caregiver Priorities and Child Health Index of Life with Disabilities in a Dutch sample of nonambulatory children with severe disabilities

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