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Background: This paper examines the development and psychometric characteristics of three instruments about end of life, designed for use with adults with intellectual disability (ID). Respectively, the instruments assess understanding of the concept of death, end-of-life planning, and fear of death. Methods: Part 1: instruments were developed or adapted, and pilot tested with 11 adults with ID and 2 disability staff. Part 2: 39 adults with ID and 40 disability staff were assessed on all three instruments. Results: We evaluated comprehensibility, internal consistency, inter-rater reliability, subscale: total score correlations, missing data, and withdrawal. Psychometric findings were mostly good. Overall, 23% of participants with ID withdrew at some point. This outcome may have been as much due to assessment fatigue as to sensitive content. There were no adverse events. Conclusions: People with ID can reliably complete assessments about end-of-life. Generally, each instrument was found to be comprehensible, reliable and valid.

This article, published in the journal Neuropediatrics, explores the clinical and genetic spectrum of RAB3GAP1-related disorders, which are associated with neurodevelopmental disorders and other physical abnormalities. The study presents detailed information on 23 patients with biallelic RAB3GAP1 variants from multiple research sites worldwide. The findings reveal a wide range of phenotypic features, including neurological symptoms, imaging abnormalities, and multi-systemic phenotypes. The research provides valuable insights into the genotype-phenotype spectrum of these disorders and may assist in genetic counseling for affected individuals and their families. [Extracted from the article]

Background We compare the effect of urokinase (urokinase-type plasminogen activator [uPA]) versus alteplase (recombinant tissue plasminogen activator [rt-PA]) for intraventricular fibrinolysis (IVF) in patients with intraventricular hemorrhage (IVH) on ventriculoperitoneal shunt (VPS) dependence, functional outcome, and complications in the management of IVH. Methods We retrospectively reviewed the patients admitted with IVH or intracerebral hemorrhage (ICH) with IVH within 7 years in three different departments and found 102 patients who met the inclusion criteria. The primary end points were VPS dependence and Glasgow outcome score (GOS) at 3 months. Secondary end points were rate of rebleeding under IVF and incidence of treatment-related complications. Patients were divided into three groups: group I comprised patients treated with external ventricular drain (EVD) and IVF with uPA; group II comprised patients treated with EVD and IVF with rt-PA; and group III comprised patients treated with EVD alone. Results In all, 9.8% patients needed VPS: 12.2% in group I and 15.0% in group II, with no statistically significant difference. VPS patients had higher values of the modified Graeb score (mGS), IVH score, and IVH volume. We saw a trend for a better outcome in group II, with six patients achieving a GOS of 4 or 5 after 3 months. The mortality rate was higher in groups I and III. We found no statistical difference in the complication rate between groups I and II. Logistic regression analysis revealed that higher mGS and age predicted worse prognosis concerning mortality. The risk for death rose by 7.8% for each year of age. Any additional mGS point increased the chances of death by 9.7%. Conclusion Our data suggest that both uPA and rt-PA are safe and comparable regarding incidence of communicating hydrocephalus, and age and mGS are predictive for mortality. [ABSTRACT FROM AUTHOR]

Changes in the higher education landscape have led to many higher education institutions reassessing their recruitment and marketing strategies. A proper understanding of the relative importance of the choice factors that prospective students consider when selecting a higher education institution will enable higher education administrators and planners to allocate funds, time and resources more efficiently and effectively. The research aimed at identifying the choice factors that discriminate between different ethnic student groups within South Africa when they go through the process of selecting an education institution. A convenience sample of 1 241 respondents was drawn, representing six public South African universities. The findings indicated that the multi-cultural nature of an institution and the opportunities for a social life on campus were the two most powerful discriminators between the two ethnic groups. The results can aid university administrators and planners in developing effective marketing and recruitment strategies to attract students from different ethnic groups. (Contains 2 tables.)