School-related experience and performance with inflammatory bowel disease: results from a cross-sectional survey in 675 children and their parents

Objective We describe school performance and experience in children with inflammatory bowel disease (IBD) across Germany and Austria. Predictors of compromised performance and satisfaction were evaluated to identify subgroups of increased risk. Design This cross-sectional analysis was based on a postal survey in children aged 10-15 with Crohn's disease, ulcerative colitis or unclassified IBD and their families. Multivariate regression analysis was used to assess influential factors on parental satisfaction with school, attending advanced secondary education (ASE), having good marks and having to repeat a class. Satisfaction was assessed based on the Child Healthcare-Satisfaction, Utilisation and Needs instrument (possible range 1.00-5.00). Results Of 1367 families contacted, 675 participated in the study (49.4%). Sixty-eight participants (10.2%) had repeated a year, 312 (46.2%) attended ASE. The median school satisfaction score was 2.67 (IQR 2.00-3.33). High socioeconomic status (SES) and region within Germany were predictive for ASE (OR high SES 8.2, 95% CI 4.7 to 14.2). SES, female sex and region of residence predicted good marks. Grade retention was associated with an active disease course (OR 2.7, 95% CI 1.4 to 5.3) and prolonged periods off school due to IBD (OR 3.9, 95% CI 1.8 to 8.6). Conclusions A severe disease course impacted on the risk of grade retention, but not on type of school attended and school marks. Low satisfaction of parents of chronically ill children with the school situation underlines the need for a more interdisciplinary approach in health services and health services research in young people

Das Element der Nicht-Identität im Antiziganismus

Vor dem Hintergrund eines umstrittenen Verhältnisses von Antisemitismus und Rassismus sowie einer uneindeutigen Verortung von Antiziganismus in diesem Verhältnis untersucht dieser Beitrag Parallelen in der Struktur antisemitischer und antiziganistischer Bilder. Zentral ist dabei das von Klaus Holz in die Analyse des Antisemitismus eingebrachte Konzept der Nicht-Identität. Antisemitischen und antiziganistischen Bildern ist es gemeinsam, dass sie Individuen einem Kollektiv zuordnen und diesem vermeintlich wesenhafte Eigenschaften zuschreiben, um so Gegenbilder zum "Eigenen" zu erschaffen; gemeinsam ist ihnen überdies die Vorstellung, die stigmatisierten Gruppen würden das "Wesen" des "Eigenen" durch "Vermischung", durch das Uneindeutigwerden von Identitätskategorien bedrohen. Diese Vorstellung einer Nicht-Identität nimmt im antisemitischen und antizigantischen Fremdbild je unterschiedliche Gestalten an, indem sie sich mit den je charakteristischen Zuschreibungen verschränkt - mit Vorstellungen von Vormodernität und sozialer Devianz im Falle des Antiziganismus, mit solchen der Übermacht und Hypermodernität im Antisemitismus.Referring to an ongoing debate on the relation of antisemitism, racism and antigypsyism and drawing on the concept of non-identity introduced by Klaus Holz in the research on antisemitism, this article discusses similarities in the structure of antisemitic and antigypsyist images while at the same time elaborating on their distinction. These images have in common that they assign individuals to collectives based on an idea of shared ancestry and ascribe allegedly essential features to these collectives, thereby creating counter-images to the "own". Another parallel between antisemitic and antigypsyist images lies in the imagination that the stigmatized groups threaten the "essence" of the "own" through "mixing", i. e. through blurring the boundaries of identity categories. This imagination of a "non-identical identity" takes a distinct shape in each case as it intersects with characteristic stereotypes: In antigypsyism, the threat to identity is connected to imaginations of those stigmatized as "gypsies" as a premodern, socially deviant group, while in antisemitism, images of an abstract power that easily merges into modern society prevail

Clinical spectrum of individuals with pathogenic NF1 missense variants affecting p.Met1149, p.Arg1276, and p.Lys1423: genotype-phenotype study in neurofibromatosis type 1

We report 281 individuals carrying a pathogenic recurrent NF1 missense variant at p.Met1149, p.Arg1276, or p.Lys1423, representing three nontruncating NF1 hotspots in the University of Alabama at Birmingham (UAB) cohort, together identified in 1.8% of unrelated NF1 individuals. About 25% (95% confidence interval: 20.5-31.2%) of individuals heterozygous for a pathogenic NF1 p.Met1149, p.Arg1276, or p.Lys1423 missense variant had a Noonan-like phenotype, which is significantly more compared with the "classic" NF1-affected cohorts (all p < .0001). Furthermore, p.Arg1276 and p.Lys1423 pathogenic missense variants were associated with a high prevalence of cardiovascular abnormalities, including pulmonic stenosis (all p < .0001), while p.Arg1276 variants had a high prevalence of symptomatic spinal neurofibromas (p < .0001) compared with "classic" NF1-affected cohorts. However, p.Met1149-positive individuals had a mild phenotype, characterized mainly by pigmentary manifestations without externally visible plexiform neurofibromas, symptomatic spinal neurofibromas or symptomatic optic pathway gliomas. As up to 0.4% of unrelated individuals in the UAB cohort carries a p.Met1149 missense variant, this finding will contribute to more accurate stratification of a significant number of NF1 individuals. Although clinically relevant genotype-phenotype correlations are rare in NF1, each affecting only a small percentage of individuals, together they impact counseling and management of a significant number of the NF1 population