A conceptual framework for interprofessional shared decision making in home care: Protocol for a feasibility study

<p>Abstract</p> <p>Background</p> <p>Shared decision making (SDM) is fundamental to informed consent and client-centered care. So far, SDM frameworks have been limited to the client-physician dyad, even though care is increasingly delivered by interprofessional (IP) teams. IP collaboration is especially essential in home care, one of health care's most rapidly growing areas. This study will assess whether it is possible to practice SDM in IP home care.</p> <p>Methods/Design</p> <p>We will use a qualitative case study and a quantitative survey to capture the macro, meso and micro levels of stakeholders in home care. The case study will follow the knowledge-to-action process framework to evaluate the work of an IP home care team at a Quebec City health center. Sources of data will include one-on-one interviews with patients, family caregivers or surrogates and significant others, and administrators; a focus group of home care health professionals; organizational documents; and government policies and standards. The interview guide for the interviews and the focus group will explore current practices and clinical problems addressed in home care; factors that could influence the implementation of the proposed IP approach to SDM; the face and content validity of the approach; and interventions to facilitate the implementation and evaluation of the approach. The survey will ask 300 health professionals working in home care at the health center to complete a questionnaire based on the Theory of Planned Behaviour that measures their intentions to engage in an IP approach to SDM. We will use our analysis of the individual interviews, the focus group and the survey to elaborate a toolkit for implementing an IP approach to SDM in home care. Finally, we will conduct a pilot study in Alberta to assess the transferability of our findings.</p> <p>Discussion</p> <p>We believe that developing tools to implement IP SDM in home care is essential to strengthening Canada's healthcare system and furthering patient-centered care. This study will contribute to the evaluation of IP SDM delivery models in home care. It will also generate practical, policy-oriented knowledge regarding the barriers and facilitators likely to influence the practice of IP SDM in home care.</p

Nationwide monitoring of end-of-life care via the Sentinel Network of General Practitioners in Belgium: the research protocol of the SENTI-MELC study

<p>Abstract</p> <p>Background</p> <p>End-of-life care has become an issue of great clinical and public health concern. From analyses of official death certificates, we have societal knowledge on how many people die, at what age, where and from what causes. However, we know little about how people are dying. There is a lack of population-based and nationwide data that evaluate and monitor the circumstances of death and the care received in the final months of life. The present study was designed to describe the places of end-of-life care and care transitions, the caregivers involved in patient care and the actual treatments and care provided to dying patients in Belgium. The patient, residence and healthcare characteristics associated with these aspects of end-of-life care provision will also be studied. In this report, the protocol of the study is outlined.</p> <p>Methods/Design</p> <p>We designed a nationwide mortality follow-back study with data collection in 2005 and 2006, via the nationwide Belgian Sentinel Network of General Practitioners (GPs) i.e. an existing epidemiological surveillance system representative of all GPs in Belgium, covering 1.75% of the total Belgian population. All GPs were asked to report weekly, on a standardized registration form, every patient (>1 year) in their practice who had died, and to identify patients who had died "non-suddenly." The last three months of these patients' lives were surveyed retrospectively. Several quality control measures were used to ensure data of high scientific quality.</p> <p>Discussion</p> <p>In 2005 and 2006, respectively 1385 and 1305 deaths were identified of which 66% and 63% died non-suddenly. The first results are expected in 2007. Via this study, we will build a descriptive epidemiological database on end-of-life care provision in Belgium, which might serve as baseline measurement to monitor end-of-life care over time. The study will inform medical practice as well as healthcare authorities in setting up an end-of-life care policy. We publish the protocol here to inform others, in particular countries with analogue GP surveillance networks, on the possibilities of performing end-of-life care research. A preliminary analysis of the possible strengths, weaknesses and opportunities of our research is outlined.</p

Mutations in KEOPS-Complex Genes Cause Nephrotic Syndrome with Primary Microcephaly

Galloway-Mowat syndrome (GAMOS) is an autosomal-recessive disease characterized by the combination of early-onset nephrotic syndrome (SRNS) and microcephaly with brain anomalies. Here we identified recessive mutations in OSGEP, TP53RK, TPRKB, and LAGE3, genes encoding the four subunits of the KEOPS complex, in 37 individuals from 32 families with GAMOS. CRISPR-Cas9 knockout in zebrafish and mice recapitulated the human phenotype of primary microcephaly and resulted in early lethality. Knockdown of OSGEP, TP53RK, or TPRKB inhibited cell proliferation, which human mutations did not rescue. Furthermore, knockdown of these genes impaired protein translation, caused endoplasmic reticulum stress, activated DNA-damage-response signaling, and ultimately induced apoptosis. Knockdown of OSGEP or TP53RK induced defects in the actin cytoskeleton and decreased the migration rate of human podocytes, an established intermediate phenotype of SRNS. We thus identified four new monogenic causes of GAMOS, describe a link between KEOPS function and human disease, and delineate potential pathogenic mechanisms

Search for dark matter produced in association with bottom or top quarks in √s = 13 TeV pp collisions with the ATLAS detector

A search for weakly interacting massive particle dark matter produced in association with bottom or top quarks is presented. Final states containing third-generation quarks and miss- ing transverse momentum are considered. The analysis uses 36.1 fb−1 of proton–proton collision data recorded by the ATLAS experiment at √s = 13 TeV in 2015 and 2016. No significant excess of events above the estimated backgrounds is observed. The results are in- terpreted in the framework of simplified models of spin-0 dark-matter mediators. For colour- neutral spin-0 mediators produced in association with top quarks and decaying into a pair of dark-matter particles, mediator masses below 50 GeV are excluded assuming a dark-matter candidate mass of 1 GeV and unitary couplings. For scalar and pseudoscalar mediators produced in association with bottom quarks, the search sets limits on the production cross- section of 300 times the predicted rate for mediators with masses between 10 and 50 GeV and assuming a dark-matter mass of 1 GeV and unitary coupling. Constraints on colour- charged scalar simplified models are also presented. Assuming a dark-matter particle mass of 35 GeV, mediator particles with mass below 1.1 TeV are excluded for couplings yielding a dark-matter relic density consistent with measurements