Assessment of data quality in a multi-centre cross-sectional study of participation and quality of life of children with cerebral palsy

BACKGROUND: SPARCLE is a cross-sectional survey in nine European regions, examining the relationship of the environment of children with cerebral palsy to their participation and quality of life. The objective of this report is to assess data quality, in particular heterogeneity between regions, family and item non-response and potential for bias. METHODS: 1,174 children aged 8–12 years were selected from eight population-based registers of children with cerebral palsy; one further centre recruited 75 children from multiple sources. Families were visited by trained researchers who administered psychometric questionnaires. Logistic regression was used to assess factors related to family non-response and self-completion of questionnaires by children. RESULTS: 431/1,174 (37%) families identified from registers did not respond: 146 (12%) were not traced; of the 1,028 traced families, 250 (24%) declined to participate and 35 (3%) were not approached. Families whose disabled children could walk unaided were more likely to decline to participate. 818 children entered the study of which 500 (61%) self-reported their quality of life; children with low IQ, seizures or inability to walk were less likely to self-report. There was substantial heterogeneity between regions in response rates and socio-demographic characteristics of families but not in age or gender of children. Item non-response was 2% for children and ranged from 0.4% to 5% for questionnaires completed by parents. CONCLUSION: While the proportion of untraced families was higher than in similar surveys, the refusal rate was comparable. To reduce bias, all analyses should allow for region, walking ability, age and socio-demographic characteristics. The 75 children in the region without a population based register are unlikely to introduce bias

Cerebral palsy in a total population of 4–11 year olds in southern Sweden. Prevalence and distribution according to different CP classification systems

<p>Abstract</p> <p>Background</p> <p>The aim of this study was to investigate the prevalence of cerebral palsy (CP) as well as to characterize the CP population, its participation in a secondary prevention programme (CPUP) and to validate the CPUP database.</p> <p>Methods</p> <p>The study population was born 1990–1997 and resident in Skåne/Blekinge on Jan 1^st2002. Multiple sources were used. Irrespective of earlier diagnoses, neuropaediatrician and other professional medical records were evaluated for all children at the child habilitation units. The CPUP database and diagnosis registers at hospital departments were searched for children with CP or psychomotor retardation, whose records were then evaluated. To enhance early prevention, CP/probable CP was searched for also in children below four years of age born 1998–2001.</p> <p>Results</p> <p>The prevalence of CP was 2.4/1,000 (95% CI 2.1–2.6) in children 4–11 years of age born in Sweden, excluding post-neonatally acquired CP. Children born abroad had a higher prevalence of CP with more severe functional limitations. In the total population, the prevalence of CP was 2.7/1,000 (95% CI 2.4–3.0) and 48% were GMFCS-level I (the mildest limitation of gross motor function).</p> <p>One third of the children with CP, who were born or had moved into the area after a previous study in 1998, were not in the CPUP database. The subtype classification in the CPUP database was adjusted in the case of every fifth child aged 4–7 years not previously reviewed.</p> <p>Conclusion</p> <p>The prevalence of CP and the subtype distribution did not differ from that reported in other studies, although the proportion of mild CP tended to be higher.</p> <p>The availability of a second opinion about the classification of CP/CP subtypes is necessary in order to keep a CP register valid, as well as an active search for undiagnosed CP among children with other impairments.</p

Interfacial Molecular Imprinting in Nanoparticle-Stabilized Emulsions

A new interfacial nano and molecular imprinting approach is developed to prepare spherical molecularly imprinted polymers with well-controlled hierarchical structures. This method is based on Pickering emulsion polymerization using template-modified colloidal particles. The interfacial imprinting is carried out in particle-stabilized oil-in-water emulsions, where the molecular template is presented on the surface of silica nanoparticles during the polymerization of the monomer phase. After polymerization, the template-modified silica nanoparticles are removed from the new spherical particles to leave tiny indentations decorated with molecularly imprinted sites. The imprinted microspheres prepared using the new interfacial nano and molecular imprinting have very interesting features: a well-controlled hierarchical structure composed of large pores decorated with easily accessible molecular binding sites, group selectivity toward a series of chemicals having a common structural moiety (epitopes), and a hydrophilic surface that enables the MIPs to be used under aqueous conditions

Viewpoints of pedestrians with and without cognitive impairment on shared zones and zebra crossings

Background: Shared zones are characterised by an absence of traditional markers that segregate the road and footpath. Negotiation of a shared zone relies on an individual’s ability to perceive, assess and respond to environmental cues. This ability may be impacted by impairments in cognitive processing, which may lead to individuals experiencing increased anxiety when negotiating a shared zone. Method: Q method was used in order to identify and explore the viewpoints of pedestrians, with and without cognitive impairments as they pertain to shared zones. Results: Two viewpoints were revealed. Viewpoint one was defined by “confident users” while viewpoint two was defined by users who “know what [they] are doing but drivers might not”. Discussion: Overall, participants in the study would not avoid shared zones. Pedestrians with intellectual disability were, however, not well represented by either viewpoint, suggesting that shared zones may pose a potential barrier to participation for this group

De Novo and Rare Inherited Copy-Number Variations in the Hemiplegic Form of Cerebral Palsy

PurposeHemiplegia is a subtype of cerebral palsy (CP) in which one side of the body is affected. Our earlier study of unselected children with CP demonstrated de novo and clinically relevant rare inherited genomic copy-number variations (CNVs) in 9.6% of participants. Here, we examined the prevalence and types of CNVs specifically in hemiplegic CP.MethodsWe genotyped 97 unrelated probands with hemiplegic CP and their parents. We compared their CNVs to those of 10,851 population controls, in order to identify rare CNVs

Physical Methods for the Preparation of Hybrid Nanocomposite Polymer Latex Particles

In this chapter, we will highlight conceptual physical approaches towards the fabrication of nanocomposite polymer latexes in which each individual latex particle contains one or more "hard" nanoparticles, such as clays, silicates, titanates, or other metal(oxides). By "physical approaches" we mean that the "hard" nanoparticles are added as pre-existing entities, and are not synthesized in situ as part of the nanocomposite polymer latex fabrication process. We will narrow our discussion to focus on physical methods that rely on the assembly of nanoparticles onto the latex particles after the latex particles have been formed, or its reciprocal analogue, the adhesion of polymer onto an inorganic nanoparticle. First, will discuss the phenomenon of heterocoagulation and its various driving forces, such as electrostatic interactions, the hydrophobic effect, and secondary molecular interactions. We will then address methods that involve assembly of nanoparticles onto or around the more liquid precursors (i.e., swollen/growing latex particles or monomer droplets). We will focus on the phenomenon of Pickering stabilization. We will then discuss features of particle interaction with soft interfaces, and see how the adhesion of particles onto emulsion droplets can be applied in suspension, miniemulsion, and emulsion polymerization. Finally, we will very briefly mention some interesting methods that make use of interface-driven templating for making well-defined assembled clusters and supracolloidal structures