ABSTRACT
Background: Advances in treatment of childhood malignancies have improved overall cure rates to 80%. Nevertheless, cancer is still the most common cause of childhood mortality in Sweden. The prognosis is particularly poor for relapse of high-risk malignancies. In the international INFORM registry, tumor tissue from patients with relapsed, refractory, or progressive pediatric cancer as well as from very-high risk primary tumors is biologically characterized using next-generation sequencing to identify possible therapeutic targets. We analyzed data from Swedish children included in the INFORM registry concerning patient characteristics, survival, sequencing results and whether targeted treatment was administered to the children based on the molecular findings. Methods: A registry-based descriptive analysis of 184 patients included in the INFORM registry in Sweden during 2016-2021. Results: The most common diagnoses were soft tissue and bone sarcomas followed by high grade gliomas [including diffuse intrinsic pontine glioma (DIPG)]. Complete molecular analysis was successful for 203/212 samples originating from 184 patients. In 88% of the samples, at least one actionable target was identified. Highly prioritized targets, according to a preset scale, were identified in 48 (24%) samples from 40 patients and 24 of these patients received matched targeted treatment but only six children within a clinical trial. No statistically significant benefit in terms of overall survival or progression free survival was observed between children treated with matched targeted treatment compared to all others. Conclusion: This international collaborative study demonstrate feasibility regarding sequencing of pediatric high-risk tumors providing molecular data regarding potential actionable targets to clinicians. For a few individuals the INFORM analysis was of utmost importance and should be regarded as a new standard of care with the potential to guide targeted therapy.
ABSTRACT
Most students with intellectual and communicative disability who rely on augmentative and alternative communication (AAC) attend non-inclusive school settings. Little is known about turn-taking and the use of various communication modes in groups of students and staff in this context. Previous studies on single students with intellectual disability in various school settings have found that staff tend to dominate interactions and augmented communication modes are used more during structured than unstructured activities. The present study explored turn-taking contributions and communication modes in whole groups of students and staff in non-inclusive school settings in Sweden. Video observations of 33 students and 30 school staff were conducted in seven classrooms during one structured activity (circle time) and one unstructured activity (leisure time). Turn-taking contributions and communication modes were examined when comparing students and staff and when comparing the two activities. Findings revealed that staff dominated the interactions and augmented communication modes were used less during leisure time than circle time. Notably, aided augmented communication modes, particularly speech-output technologies, were used sparsely. Findings of this study highlight the importance of supporting staff members in applying partner strategies and incorporating augmented input, especially aided augmented input, across various group activities at school.
Subject(s)
Communication Aids for Disabled , Communication Disorders , Intellectual Disability , Humans , Students , Speech , CommunicationABSTRACT
This paper presents work on developing methodology material for use of gaze controlled computers. The target group is families and professionals around children with severe multiple disabilities. The material includes software grids for children at various levels, aimed for communication, leisure and learning and will be available for download.
