Surveillance of Cerebral Palsy in Europe: Development of the JRC-SCPE Central Database and Public Health Indicators

The Surveillance of Cerebral Palsy in Europe (SCPE) network was established in 1998, bringing together professionals and researchers working in population-based registries of children with Cerebral Palsy (CP) across Europe. The aims of the network are to collect population data on CP to inform and improve understanding of the disease, to raise standards of care for children with CP, disseminate knowledge for patients, health care professionals and key stakeholders, and to provide a framework for collaborative research. In 2016, to provide sustainability for this very important network, the SCPE Central Registry and European level coordination activities were transferred to the JRC and became part of the European Platform for Rare Diseases Registration. The SCPE Central Database is annually updated with new cases submitted by the SCPE Registries. In line with the mission of the JRC for providing evidence-based policy support, and in order to extend the use of the SCPE Central database to public health relevant outputs, the JRC-SCPE Central Registry launched the initiative of developing public health indicators. The public health indicators have been developed by based on collaboration between the JRC and the University Hospital of Toulouse. The input for the calculations of these indicators is based on data included in the standard SCPE dataset and collected annually by the registries in the JRC-SCPE Central Database. The current report describes the development of the JRC-SCPE Central Database after the transfer from the University of Grenoble, and the definition of a first set of key health indicators.JRC.F.1-Health in Societ

Oxytocin may be useful to increase trust in others and decrease disruptive behaviours in patients with Prader-Willi syndrome: a randomised placebo-controlled trial in 24 patients

<p>Abstract</p> <p>Background</p> <p>Prader-Willi syndrome (PWS) is a complex neurodevelopmental genetic disorder with hypothalamic dysfunction, early morbid obesity with hyperphagia, and specific psychiatric phenotypes including cognitive and behavioural problems, particularly disruptive behaviours and frequent temper outbursts that preclude socialization. A deficit in oxytocin (OT)-producing neurons of the hypothalamic paraventricular nucleus has been reported in these patients.</p> <p>Methods</p> <p>In a double-blind, randomised, placebo-controlled study, 24 adult patients with PWS received a single intranasal administration of 24 IU of OT or placebo and were tested 45 min later on social skills. Behaviours were carefully monitored and scored using an in-house grid as follows: over the two days before drug administration, on the half-day following administration, and over the subsequent two days. All patients were in a dedicated PWS centre with more than ten years of experience. Patients are regularly admitted to this controlled environment.</p> <p>Results</p> <p>Patients with PWS who received a single intranasal administration of OT displayed significantly increased trust in others (P = 0.02) and decreased sadness tendencies (P = 0.02) with less disruptive behaviour (P = 0.03) in the two days following administration than did patients who received placebo. In the half-day following administration, we observed a trend towards less conflict with others (p = 0.07) in the OT group compared with the placebo group. Scores in tests assessing social skills were not significantly different between the two groups.</p> <p>Conclusions</p> <p>This study needs to be reproduced and adapted. It nevertheless opens new perspectives for patients with PWS and perhaps other syndromes with behavioural disturbances and obesity.</p> <p>Trial registration number</p> <p>ClinicalTrials.gov: <a href="http://www.clinicaltrials.gov/ct2/show/NCT01038570">NCT01038570</a></p

Cannabis experimentation among students with cognitive disorders in special units (ULIS) in mains stream schools

© Edimark. Les articles publiés dans Le Courrier des addictions le sont sous la seule responsabilité de leurs auteurs. Tous droits de traduction, d’adaptation et de reproduction par tous procédés réservés pour tous pays. © décembre 1998Globally, current inclusive education policies allow students with cognitive disorders to participate in community/school life, however, such an increasing exposition might raise their level of detrimental behaviours as well, namely substance use. This study aims to: 1) describe cannabis experimentation rates among cognitively impaired adolescents schooled in special units (ULIS) in junior high-schools, compared to mainstream students; and 2) to explore factors associated with substance experimentation among ULIS students. A cross-sectional experimental study adapted from the international HBSC/WHO questionnaire was conducted among 700 ULIS students with a mean age of 14.2 years and 7023 students in mainstream junior high-school (mean age: 13.6). Only students aged 14 or more were considered in the analyses (382 ULIS students; 2642 mainstream junior high-school students). The proportion of students in inclusive education enrolled in ULIS who have already experimented cannabis is not as high as among their non-disabled peers (9.1% among ULIS students vs . 20.9% among mainstream junior high-school students), yet is far from being negligible. Thus, to have epidemiological data on cannabis experimentation in intellectually disabled students is crucial to adapt interventions and policies to the cognitive level and specificities of this group of adolescents, in order to increase their chances and opportunities later in adulthood.Actuellement, grâce aux politiques d’éducation inclusive, le nombre d’élèves avec une défi cience cognitive scolarisés en milieu ordinaire s’accroît. Si cette inclusion leur permet désormais de participer à la vie scolaire et communautaire, elle les expose aux conduites potentiellement à risque pour la santé, comme l’expérimentation de substances psychoactives. Les objectifs de cette étude sont d’estimer la prévalence de l’expérimentation de cannabis parmi les adolescents scolarisés en Unités localisées pour l’inclusion scolaire (ULIS), de la comparer à celle chez leurs pairs, et d’explorer les facteurs associés à l’expérimentation du cannabis chez les élèves d’ULIS. En 2014, une étude pilote adaptée de l’enquête internationale HBSC/OMS a été conduite parmi 700 élèves d’ULIS (âge moyen : 14,2 ans) et 7 023 autres collégiens (âge moyen : 13,6 ans). Seuls les élèves de 14 ans ou plus ont été considérés dans les analyses (382 en ULIS ; 2 642 en classe ordinaire). La proportion d’élèves ayant déjà expérimenté le cannabis est plus faible en ULIS que chez les autres collégiens (9,1 % parmi les élèves d’ULIS versus 20,9 % parmi les autres), sans pour autant être négligeable. Ainsi, le recueil de données épidémiologiques sur l’expérimentation du cannabis parmi les élèves avec un défi cit cognitif s’avère nécessaire afi n de mettre en place des programmes de prévention ciblés et adaptés à leurs capacités cognitives et, ainsi, d’augmenter leurs chances et opportunités à l’âge adulte.La recherche concernant les élèves d’ULIS a été financée par un appel d’offre de la MiRe-DRESS et la CNSA (AAR 2012 Handicap et perte d’autonomie ; A13011BS-DREES/CNSA). La collaboration entre la France et le Portugal est financée par le Partenariat Hubert-Curien PESSOA 2015 (projet n° 33701NJ). Teresa Santos est financée par une bourse de thèse de la Fondation portugaise pour la science et la technologie (FCT) [référence SFRH/BD/82066/2011]. HBSC est une enquête internationale conduite sous l’égide de l’OMS/EURO. La liste complète des chercheurs participants se trouve sur le site de HBSC: http://www.HBSC.org. L’enquête HBSC 2014, en France, est pilotée par le service médical du rectorat de Toulouse (ministère de l’Éducation nationale) et l’équipe 2 de l’UMR1027 Inserm/UPS ; elle est financée par Santé publique France et l’Observatoire français des drogues et des toxicomanies (OFDT).info:eu-repo/semantics/publishedVersio

Factors associated with early menarche: results from the French Health Behaviour in School-aged Children (HBSC) study

<p>Abstract</p> <p>Background</p> <p>Puberty is a transition period making physiological development a challenge adolescents have to face. Early pubertal development could be associated with higher risks of poor health. Our objective was to examine risk behaviours, physical and psychological determinants associated with early menarche (<11 years).</p> <p>Methods</p> <p>Early menarche was assessed in the Health Behaviour in School-aged Children French cross-sectional survey. Data were collected in 2006 by anonymous self-reported standardized questionnaire from a nationally representative sample of 1072 15 years old girls in school classrooms. Family environment, school experience, physical and psychological factors, risk behaviours (substance use and sexual initiation) were recorded. Logistic regression models were applied (analysing for crude and adjusted relationships between early menarche and risk behaviours controlled for family context).</p> <p>Results</p> <p>Median age at menarche was 13.0 years; 57 girls (5.3%) were early-matured. Controlled for familial environment, early menarche was associated with having had more than two life-drunkenness episodes (adjusted OR = 2.5 [1.3-4.6]), early sexual initiation (adjusted OR = 2.8 [1.3-6.0]) and overweight (adjusted OR = 7.3 [3.6-14.9]).</p> <p>Conclusion</p> <p>Early-maturing girls may affiliate with older adolescents, hence engage in risk behaviours linked to their appearance rather than their maturity level. Factors associated with early menarche highlight the need to focus attention on early-matured girls to prevent further health problems linked to risk behaviours.</p

Enquêtes par auto-questionnaire au service de la santé à l’école : EnCLASS, un exemple français

International audienceThe French EnCLASS survey is the only one of its kind in Europe to combine two international health surveys conducted in schools (HBSC/ESPAD). We will show the particular place of schools in these surveys and the example of the analysis of harassment of 3rd grade students with disabilities illustrates their value in informing public policies. It is necessary to link surveys, health and schools, in an approach by living environment which should bring together all the stakeholders concerned by the promotion teenage health (researchers, professionals in education, health or the social sector, professionals, parents and teenagers themselves).La encuesta francesa EnCLASS es el fruto del acercamiento único en Europa de dos encuestas internacionales de salud conducidas en medio escolar (HBSC/ESPAD). Mostraremos el lugar particular de la Escuela para estas encuestas, y el ejemplo del análisis del acoso de los alumnos de último año de colegio en situación de discapacidad nos permitirá ilustrar su interés para echar luz sobre las políticas públicas. Una articulación entre encuestas, salud y escuela es necesaria, en una aproximación por entorno de vida que debe reunir a todas las partes implicadas concernidas por la promoción de la salud de los adolescentes (los investigadores, los profesionales de la educación, de la salud o del campo social, los padres y los mismos adolescentes).L’enquête française EnCLASS est le rapprochement unique en Europe de deux enquêtes internationales de santé conduites en milieu scolaire (HBSC et ESPAD). L’article nous montre l’intérêt de ces enquêtes pour éclairer les politiques publiques, à partir de l’exemple de l’analyse du harcèlement des collégiens de 3e en situation de handicap. Une articulation entre enquêtes, santé et école est nécessaire, dans une approche par milieu de vie qui doit rassembler toutes les parties prenantes concernées par la promotion de la santé des adolescents (chercheurs, professionnels de l’éducation, de la santé ou du social, parents et adolescents eux-mêmes)

Élèves handicapés ou porteurs de maladies chroniques: perception de leur vie et de leur bien-être au collège

National audienceEn cohérence avec une dynamique internationale d'inclusion scolaire, le nombre d'élèves en situation de handicap scolarisés en milieu ordinaire en France a largement augmenté ; leur vécu scolaire mérite désormais d'être considéré. En 2014, une enquête pilote a été conduite en France. Elle est adossée à l'enquête internationale HBSC (Health behaviour in school-aged children) et a collecté des données comparables à celles des collégiens « valides », chez des collégiens porteurs de maladies chroniques/de handicap, scolarisés individuellement ou collectivement en unités localisées d'inclusion scolaire (ULIS), sur leur santé, leurs comportements de santé et leur vécu scolaire

Disparity of child/parent‐reported quality of life in cerebral palsy persists into adolescence

International audienceAim: To examine the evolution of child-parent discrepancy in reporting quality of life (QoL) between childhood and adolescence in children with cerebral palsy (CP) and to investigate potential factors associated with such a discrepancy.Method: We used data from the SPARCLE (Study of PARticipation of Children with CP Living in Europe) study, a population-based cohort study of children with CP, aged 8 to 12 years at baseline (in 2004-2005), in nine European centres, who were followed up at the age of 13 to 17 years. The KIDSCREEN-52 Quality of Life measure was used at baseline and follow-up; 354 child-parent dyads out of 500 eligible dyads were followed up (201 males, 153 females). We used intraclass correlation coefficients (ICCs) to examine agreement between parent proxy-reports and self-reported QoL. We used linear regression to examine factors associated with child-parent discrepancy in QoL reporting.Results: Agreement was low to moderate (ICC=0.16-0.48) in childhood and in adolescence across all QoL domains. In four domains (moods and emotions, self-perception, relationship with parents and home life, and social support and peers), the extent of the discrepancy increased significantly between childhood and adolescence. Parenting stress, child pain, and child behaviour problems influenced parent proxy-reports during both childhood and adolescence.Interpretation: The points of view of the child and their parents should be treated as complementary to obtain better knowledge regarding the QoL of children and adolescents with CP

Early discharge and hospital-assisted home care is associated with better neurodevelopmental outcome in preterm infants

International audienceAimsTo compare hospital-assisted neonatal home care and standard hospital care for preterm newborns on neurodevelopment at 2 years corrected age, as well as duration of hospitalization, breastmilk rates, and readmissions before 1 year.MethodsThis observational study enrolled 415 inborn neonates <34+ 6 weeks that received home care (2008 to 2015) in the French University Hospital of Toulouse and 3186 neonates from the national cohort of infants discharged in 2011 that received standard hospital neonatal care (EPIPAGE 2). Neurodevelopment at 2 years was assessed with the Ages and Stages Questionnaire-3 (ASQ-3).ResultsAt two years corrected age, infants in home care had 61% less risk of overall low ASQ ≤220 (OR = 0.4 [0.3–0.5], p < 0.001) and 31–80% less risk of low scores in four out of five domains compared to standard care. Home care was associated with shorter hospital stays (− 9 days; p < 0.001), higher breastmilk rates at final discharge (OR = 3.6 [2.8–4.6], p < 0.001 for singletons and OR = 2.3 [1.6–3.1], p < 0.001 for multiples), and more breastmilk feeding for at least six months (OR = 1.8 [1.3–2.3], p < 0.001 for singletons, OR = 3.6 [2.1–6.3], p < 0.001 for multiples). Readmissions also occurred less frequently with home care than with standard care, except for twins (OR = 0.7 [0.6–0.8], p < 0.001).ConclusionHospital-assisted neonatal home care for preterm infants was associated with better neurodevelopment at 2 years corrected age, shorter duration of hospitalization, and higher rates of breastmilk feeding at 6 months