| 1. |
- Arnaud, Catherine, et al.
(författare)
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Parent-reported quality of life of children with cerebral palsy in Europe.
- 2008
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Ingår i: Pediatrics. - : American Academy of Pediatrics (AAP). - 1098-4275 .- 0031-4005. ; 121:1, s. 54-64
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 2. |
- Capel, Francesca, et al.
(författare)
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Mini-EUSO data acquisition and control software
- 2019
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Ingår i: JOURNAL OF ASTRONOMICAL TELESCOPES INSTRUMENTS AND SYSTEMS. - : SPIE-SOC PHOTO-OPTICAL INSTRUMENTATION ENGINEERS. - 2329-4124. ; 5:4
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Tidskriftsartikel (refereegranskat)abstract
- We present the data acquisition and control software for the operation of the Mini-Extreme Universe Space Observatory (EUSO), a space-based fluorescence telescope for the observation of extensive air showers and atmospheric phenomena. This framework has been extensively tested alongside the development of Mini-EUSO and was finalized ahead of the successful launch of the instrument to the ISS on August 22, 2019. The data acquisition, housekeeping, and subsystem control is achieved using custom-designed front-end electronics based on a Xilinx Zynq XC7Z030 chip interfaced with a PCIe/104 CPU module via the integrated Zynq processing system. The instrument control interface is handled using an object-oriented C++ design, which can be run both autonomously and interactively as required. Although developed for Mini-EUSO, the modular design of both the software and hardware can easily be scaled up to larger instrument designs and adapted to different subsystem and communication requirements. As such, this framework will also be used in the upgrade of the EUSO-TA instrument and potentially for the next EUSO-SPB2 NASA Balloon flight. The software and firmware presented are open source and released with detailed and integrated documentation.
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| 3. |
- Casolino, M., et al.
(författare)
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Cosmic ray measurements with Pamela experiment
- 2009
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Konferensbidrag (refereegranskat)abstract
- PAMELA is a satellite borne experiment designed to study with great accuracy cosmic rays of galactic, solar, and trapped nature hi a wide energy range (protons: 80 MeV-700 GeV, electrons 50 MeV-400 GeV). Main objective is the study of the antimatter component: antiprotons (80 MeV-190 GeV), positrons (50 MeV-270 GeV) and search for antinuclei with a precision of the order of 10(-8)). The experiment, housed on board the Russian Resurs-DK1 satellite, was launched on June, 15(th) 2006 in a 350 X 600 km orbit with an inclination of 70 degrees. In this work we describe the scientific objectives awl the performance of PAMELA in its first two years of operation. Data oil protons of trapped, secondary and galactic nature - as well as measurements of the December 13(th) 2006 Solar Particle Event - are also provided.
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| 4. |
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| 5. |
- Fauconnier, Jérôme, et al.
(författare)
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Participation in life situations of 8-12 year old children with cerebral palsy: cross sectional European study.
- 2009
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Ingår i: BMJ (Clinical research ed.). - 1468-5833. ; 338
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: To evaluate how involvement in life situations (participation) in children with cerebral palsy varies with type and severity of impairment and to investigate geographical variation in participation. DESIGN: Cross sectional study. Trained interviewers visited parents of children with cerebral palsy; multilevel multivariable regression related participation to impairments, pain, and sociodemographic characteristics. SETTING: Eight European regions with population registers of children with cerebral palsy; one further region recruited children from multiple sources. PARTICIPANTS: 1174 children aged 8-12 with cerebral palsy randomly selected from the population registers, 743 (63%) joined in the study; the further region recruited 75 children. MAIN OUTCOME MEASURE: Children's participation assessed by the Life-H questionnaire covering 10 main areas of daily life. Scoring ignored adaptations or assistance required for participation. RESULTS: Children with pain and those with more severely impaired walking, fine motor skills, communication, and intellectual abilities had lower participation across most domains. Type of cerebral palsy and problems with feeding and vision were associated with lower participation for specific domains, but the sociodemographic factors examined were not. Impairment and pain accounted for up to a sixth of the variation in participation. Participation on all domains varied substantially between regions: children in east Denmark had consistently higher participation than children in other regions. For most participation domains, about a third of the unexplained variation could be ascribed to variation between regions and about two thirds to variation between individuals. CONCLUSIONS: Participation in children with cerebral palsy should be assessed in clinical practice to guide intervention and assess its effect. Pain should be carefully assessed. Some European countries facilitate participation better than others, implying some countries could make better provision. Legislation and regulation should be directed to ensuring this happens.
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| 7. |
- Horber, Veronka, et al.
(författare)
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Prevalence, Clinical Features, Neuroimaging, and Genetic Findings in Children With Ataxic Cerebral Palsy in Europe
- 2023
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Ingår i: Neurology. - 0028-3878 .- 1526-632X. ; 101:24, s. E2509-E2521
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Tidskriftsartikel (refereegranskat)abstract
- Background and ObjectivesTo report on prevalence, associated impairments, severity, and neuroimaging findings in children with ataxic cerebral palsy (CP).MethodsIn children coded as having ataxic CP in the Central database of Joint Research Center-Surveillance of Cerebral Palsy in Europe (JRC-SCPE) and born during 1980-2010, birth characteristics, severity profiles including associated impairments, neuroimaging patterns, and the presence of syndromes were analyzed. Definitions were according to validated SCPE guidelines. Prevalence over time was estimated using Poisson regression.ResultsIn total, 679 children with ataxic CP were identified in 20 European CP registers. The proportion with ataxic CP was 3.8% and varied from 0% to 12.9%. Prevalence over time showed no significant trend. Approximately 70% of children with ataxic CP were able to walk, and 40% had severe intellectual impairment and a high impairment index. Children with ataxic CP were mostly born at term (79%) and with normal birth weight (77%). Neuroimaging patterns revealed normal findings in 29%, brain maldevelopments in 28.5%, miscellaneous findings in 23.5%, and brain injuries in 19%, according to the SCPE classification. Genetic syndromes were described in 9%.DiscussionThis register-based multicenter study on children with ataxic CP provides a large sample size for the analysis of prevalence, severity, and origin of this rare CP subtype. Even with strict inclusion and classification criteria, there is variation between registers on how to deal with this subtype, and diagnosis of ataxic CP remains a challenge. Ataxic cerebral palsy differs from other CP subtypes: children with ataxic CP have a disability profile that is more pronounced in terms of cognitive than gross motor dysfunction. They are mostly term born and the origin rarely suggests acquired injuries. In addition to neuroimaging, a comprehensive genetic workup is particularly recommended for children with this CP type.
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| 8. |
- Muehlan, Holger, et al.
(författare)
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Satisfaction with health care services in young people with cerebral palsy in the transition period: results from a European multicenter study
- 2024
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Ingår i: FRONTIERS IN MEDICINE. - 2296-858X. ; 11
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Tidskriftsartikel (refereegranskat)abstract
- Background Young people with chronic health conditions and disabilities rely on the healthcare system to maintain their best possible health. The appropriate delivery and utilization of healthcare services are key to improve their autonomy, self-efficacy and employment outcomes. The research question of our study is directed toward investigating if poor availability and accessibility of healthcare services in general, as identified by unmet needs in healthcare, are associated with dissatisfaction with healthcare.Methods Within a European multicenter observational study, 357 young adults with cerebral palsy aged 19-28 were included. We assessed special healthcare needs, utilization of healthcare services, and satisfaction with healthcare applying the short-form of the YHC-SUN-SF, environmental and social variables (EAEQ) as well as indicators for severity of condition and functionality (e.g., GMFCS) of these participants based on a self-, assisted self- or proxy-reports. We used correlation analyses to explore associations between satisfaction with healthcare and respective indicators related to availability and accessibility of healthcare services as well as severity of the condition. In addition, we included reference values for satisfaction with heath care from young adults with various chronic conditions assessed within population-based surveys from some of the European countries included in the study.Results We identified several unmet healthcare needs, especially for widely used and established services (e.g., physical therapy). Satisfaction with healthcare (YHC-SUN-SF general and subscale scores) was moderate to high and almost consistently better for the sample of young adults with cerebral palsy as compared to reference values for young adults with various chronic conditions assessed within general population surveys). Correlation coefficients between satisfaction with healthcare and utilization of services and (unmet) healthcare needs were low, also with different indicators for severity of the condition or functionality.Conclusion Young adults with cerebral palsy reports of unmet healthcare needs varied largely but showed substantial deficits in some aspects. This seems to have no impact on the satisfaction with healthcare those patients currently receive. We conclude that these are two different constructs and somewhat independent indicators to evaluate the quality of healthcare. Clinicians and other practitioners should consider this distinction when monitoring patient needs in their daily practice.
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| 9. |
- Parkes, Jackie, et al.
(författare)
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Psychological problems in children with cerebral palsy: a cross-sectional European study.
- 2008
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Ingår i: Journal of child psychology and psychiatry, and allied disciplines. - : Wiley. - 1469-7610 .- 0021-9630. ; 49:4, s. 405-13
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: To describe psychological symptoms in 8-12-year-old children with cerebral palsy; to investigate predictors of these symptoms and their impact on the child and family. DESIGN: A cross-sectional multi-centre survey. PARTICIPANTS: Eight hundred and eighteen children with cerebral palsy, aged 8-12 years, identified from population-based registers of cerebral palsy in eight European regions and from multiple sources in one further region. MAIN OUTCOME MEASURES: The Strengths and Difficulties Questionnaire (SDQ)(P4-16) and the Total Difficulties Score (TDS) dichotomised into normal/borderline (TDS < or = 16) versus abnormal (TDS > 16). STATISTICAL ANALYSIS: Multilevel, multivariable logistic regression to relate the presence of psychological symptoms to child and family characteristics. RESULTS: About a quarter of the children had TDS > 16 indicating significant psychological symptoms, most commonly in the domain Peer Problems. Better gross motor function, poorer intellect, more pain, having a disabled or ill sibling and living in a town were independently associated with TDS > 16. The risk of TDS > 16 was odds ratio (OR) = .2 (95% CI: .1 to .3) comparing children with the most and least severe functional limitations; OR = 3.2 (95%CI: 2.1 to 4.8) comparing children with IQ < 70 and others; OR = 2.7 (95% CI: 1.5 to 4.6) comparing children in severe pain and others; OR = 2.7 (95% CI:1.6 to 4.6) comparing children with another disabled sibling or OR = 1.8 (95%CI: 1.2 to 2.8) no siblings and others; OR = 1.8 (95% CI: 1.1 to 2.8) comparing children resident in a town and others. Among parents who reported their child to have psychological problems, 95% said they had lasted over a year, 37% said they distressed their child and 42% said they burdened the family at least 'quite a lot'. CONCLUSIONS: A significant proportion of children with cerebral palsy have psychological symptoms or social impairment sufficiently severe to warrant referral to specialist services. Care must be taken in the assessment and management of children with cerebral palsy to ensure psychological problems are not overlooked and potentially preventable risk factors like pain are treated effectively. The validity of the SDQ for children with severe disability warrants further assessment.
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