Parent-Reported Quality of Life of Children With Cerebral Palsy in Europe

OBJECTIVE. The goal was to determine whether the type and severity of the child's impairments and the family's psychosocial, social, and economic characteristics influence parent-reported child quality of life across the spectrum of severity of cerebral palsy.

METHODS. Our population-based, cross-sectional survey conducted in 2004 to 2005 involved 818 children with cerebral palsy, 8 to 12 years of age, from 7 countries (9 regions) in Europe. Child quality of life was assessed through parent reports by using the Kidscreen questionnaire, and data were analyzed separately for each of its 10 domains.

RESULTS. The parental response rates were >93% for all domains except one. Gross motor function and IQ level were found to be associated independently with quality of life in most domains. However, greater severity of impairment was not always associated with poorer quality of life; in the moods and emotions, self-perception, social acceptance, and school environment domains, less severely impaired children were more likely to have poor quality of life. Pain was associated with poor quality of life in the physical and psychological well-being and self-perception domains. Parents with higher levels of stress were more likely to report poor quality of life in all domains, which suggests that factors other than the severity of the child's impairment may influence the way in which parents report quality of life.

CONCLUSIONS. The parent-reported quality of life for children with cerebral palsy is associated strongly with impairment. However, depending on the areas of life, the most severely impaired children (in terms of motor functioning or intellectual ability) do not always have the poorest quality of life.

Response shift in the assessment of quality of life among people attending cardiac rehabilitation

Objectives: To examine whether any response shift in quality of life assessment over the course of a cardiac rehabilitation programme could be explained by changes in individuals’ internal standards (recalibration), values (reprioritization) and/or conceptualization of quality of life and the extent to which any response shift could be explained by health locus of control, optimism and coping strategy. Design: Longitudinal survey design. Methods: The SEIQoL-DW was administered at the beginning and end of a cardiac rehabilitation programme. At the end of the programme, the SEIQoL-DW then-test was also administered to measure response shift. A total of 57 participants completed these measures and other measures to assess health locus of control, optimism and coping. Results: Response shift effects were observed in this population mainly due to recalibration. When response shift was incorporated into the analysis of QoL a larger treatment effect was observed. Active coping as a mechanism in the response shift model was found to have a significant positive correlation with response shift. Conclusion: This study showed that response shift occurs during cardiac rehabilitation. The occurrence of response shift in QoL ratings over time for this population could have implications for the estimation of the effectiveness of the intervention.

Verteporfin Photodynamic Therapy Cohort Study Report 2: Clinical Measures of Vision and Health-Related Quality of Life

Purpose: To quantify decreases in health-related quality of life (HRQoL) for given deterioration in clinical measures of vision; to describe the shape of these relationships; and to test whether the gradients of these relationships change with duration of visual loss.

Kids’ Life and Times: using an Internet survey to measure children’s health-related quality of life

Objective
To examine the psychometric properties of an internet version of a children and young person's quality of life measure originally designed as a paper questionnaire.

Methods
Participants were 3,440 10 and 11 year old children in Northern Ireland who completed the KIDSCREEN-27 online as part of a general attitudinal survey. The questionnaire was animated using cartoon characters that are familiar to most children and the questions appeared on screen and were read aloud by actors.

Results
Exploratory principal component analysis of the online version of the questionnaire supported the existence of five components in line with the paper version. The items loaded on the components that would be expected based on previous findings with five domains - physical well-being,psychological well-being, autonomy and parents, social support and peers and school environment.Internal consistency reliability of the five domains was measured using Cronbach's alpha and the results suggested that the scale scores were reliable. The domain scores were similar to those reported in the literature for the paper version.

Conclusions
These results suggest that the factor structure and internal consistency reliability scores of the KIDSCREEN-27 embedded within an online survey are comparable to those reported in the literature for the paper version.