The OCareCloudS project: toward organizing care through trusted cloud services

The increasing elderly population and the shift from acute to chronic illness makes it difficult to care for people in hospitals and rest homes. Moreover, elderly people, if given a choice, want to stay at home as long as possible. In this article, the methodologies to develop a cloud-based semantic system, offering valuable information and knowledge-based services, are presented. The information and services are related to the different personal living hemispheres of the patient, namely the daily care-related needs, the social needs and the daily life assistance. Ontologies are used to facilitate the integration, analysis, aggregation and efficient use of all the available data in the cloud. By using an interdisciplinary research approach, where user researchers, (ontology) engineers, researchers and domain stakeholders are at the forefront, a platform can be developed of great added value for the patients that want to grow old in their own home and for their caregivers

Ambient-aware continuous care through semantic context dissemination

Background: The ultimate ambient-intelligent care room contains numerous sensors and devices to monitor the patient, sense and adjust the environment and support the staff. This sensor-based approach results in a large amount of data, which can be processed by current and future applications, e. g., task management and alerting systems. Today, nurses are responsible for coordinating all these applications and supplied information, which reduces the added value and slows down the adoption rate. The aim of the presented research is the design of a pervasive and scalable framework that is able to optimize continuous care processes by intelligently reasoning on the large amount of heterogeneous care data. Methods: The developed Ontology-based Care Platform (OCarePlatform) consists of modular components that perform a specific reasoning task. Consequently, they can easily be replicated and distributed. Complex reasoning is achieved by combining the results of different components. To ensure that the components only receive information, which is of interest to them at that time, they are able to dynamically generate and register filter rules with a Semantic Communication Bus (SCB). This SCB semantically filters all the heterogeneous care data according to the registered rules by using a continuous care ontology. The SCB can be distributed and a cache can be employed to ensure scalability. Results: A prototype implementation is presented consisting of a new-generation nurse call system supported by a localization and a home automation component. The amount of data that is filtered and the performance of the SCB are evaluated by testing the prototype in a living lab. The delay introduced by processing the filter rules is negligible when 10 or fewer rules are registered. Conclusions: The OCarePlatform allows disseminating relevant care data for the different applications and additionally supports composing complex applications from a set of smaller independent components. This way, the platform significantly reduces the amount of information that needs to be processed by the nurses. The delay resulting from processing the filter rules is linear in the amount of rules. Distributed deployment of the SCB and using a cache allows further improvement of these performance results

Post-intervention Status in Patients With Refractory Myasthenia Gravis Treated With Eculizumab During REGAIN and Its Open-Label Extension

OBJECTIVE: To evaluate whether eculizumab helps patients with anti-acetylcholine receptor-positive (AChR+) refractory generalized myasthenia gravis (gMG) achieve the Myasthenia Gravis Foundation of America (MGFA) post-intervention status of minimal manifestations (MM), we assessed patients' status throughout REGAIN (Safety and Efficacy of Eculizumab in AChR+ Refractory Generalized Myasthenia Gravis) and its open-label extension. METHODS: Patients who completed the REGAIN randomized controlled trial and continued into the open-label extension were included in this tertiary endpoint analysis. Patients were assessed for the MGFA post-intervention status of improved, unchanged, worse, MM, and pharmacologic remission at defined time points during REGAIN and through week 130 of the open-label study. RESULTS: A total of 117 patients completed REGAIN and continued into the open-label study (eculizumab/eculizumab: 56; placebo/eculizumab: 61). At week 26 of REGAIN, more eculizumab-treated patients than placebo-treated patients achieved a status of improved (60.7% vs 41.7%) or MM (25.0% vs 13.3%; common OR: 2.3; 95% CI: 1.1-4.5). After 130 weeks of eculizumab treatment, 88.0% of patients achieved improved status and 57.3% of patients achieved MM status. The safety profile of eculizumab was consistent with its known profile and no new safety signals were detected. CONCLUSION: Eculizumab led to rapid and sustained achievement of MM in patients with AChR+ refractory gMG. These findings support the use of eculizumab in this previously difficult-to-treat patient population. CLINICALTRIALSGOV IDENTIFIER: REGAIN, NCT01997229; REGAIN open-label extension, NCT02301624. CLASSIFICATION OF EVIDENCE: This study provides Class II evidence that, after 26 weeks of eculizumab treatment, 25.0% of adults with AChR+ refractory gMG achieved MM, compared with 13.3% who received placebo

Minimal Symptom Expression' in Patients With Acetylcholine Receptor Antibody-Positive Refractory Generalized Myasthenia Gravis Treated With Eculizumab

The efficacy and tolerability of eculizumab were assessed in REGAIN, a 26-week, phase 3, randomized, double-blind, placebo-controlled study in anti-acetylcholine receptor antibody-positive (AChR+) refractory generalized myasthenia gravis (gMG), and its open-label extension

Usefulness of the Supports Intensity Scale (SIS) for persons with other than intellectual disabilities

In response to the shift from a system-centred care model to a person-centred support model, the Supports Intensity Scale (SIS) has been developed as an instrument to assess the support needs of persons with intellectual disabilities. The instrument is used as a tool for constructing individual support plans, as well as a tool for resource allocation. The aim of the present study was to evaluate the usefulness of the SIS for persons with other than intellectual disabilities. Therefore, the psychometric properties of the SIS were investigated in a sample of 1303 persons with other than intellectual disabilities. Confirmatory factor analysis failed to support the originally proposed six-factor model within this sample. However, an explorative examination of the underlying structure resulted in a shortened version of the SIS, including four subscales and 22 items. Further analyses revealed satisfying results for reliability, construct validity, and criterion validity of the shortened assessment tool (SIS-NID).status: publishe

Factorial validity of the Supports Intensity Scale (SIS)

The Supports Intensity Scale (SIS) has been developed to provide information on the support needs of persons with intellectual disabilities. The present study aimed at evaluating the factorial validity of the SIS in a sample of 14,862 persons with intellectual disabilities. The structure of the instrument as promulgated by the developers was tested and its stability was evaluated across gender, age, disability complexity, and disability severity groups. Confirmatory factor analysis supported the originally proposed subscale structure. The six-factor structure yielded strict factorial invariance across gender, age and disability complexity, whereas invariance of factor configuration was merely established across disability severity groups. Possible explanations and implications of these findings are discussed.status: publishe