"Real decision-making is hard to find" - Swiss perinatal care providers' perceptions of and attitudes towards decision-making in birth: A qualitative study

Purpose: Ineffective communication and limited autonomy frequently lie at the core of negative birth experiences. Numerous studies indicate a need to improve decision-making with a deliberate shift towards person-centered care. Thus, it is imperative to study the determinants of autonomy-depriving decision-making and ineffective communication through both provider and birthing people perspectives. Our study explores providers' perceptions of and attitudes towards decision-making in birth, particularly regarding person-centeredness, autonomy, informed consent, and decision-making capacity. We conducted a qualitative interview study and employed reflexive thematic analysis. In total, 15 Swiss providers from birth hospitals and birth centers participated. Results: Analysis resulted in the development of three themes and eight subthemes. First, the "otherness of birth" encompasses providers' perception of birth as a clinical situation that is fundamentally different from other clinical situations. Second, the otherness of birth goes along with an "ethical fading", that is ethical dimensions - to some extent - fade into the background as they are obscured by various circumstances that are related to birth, birthing people, and providers. Third, the "physiology-pathology-dichotomy" describes the permeative power of this dichotomy with respect to providers' decision-making approaches and their normative weighing of ethical principles. Conclusions: Decision-making in birth is a critical factor in the actualization of autonomy and characterized by bioethical complexity. Our study reveals important insights into how autonomy-depriving decision-making and ineffective communication unfolds in birth. Our findings provide a framework for future research and yield points of leverage for enhancing decision-making in birth

THE BIG MESS CONSTRUCTION

Abstract An LFG treatment is proposed for the 'Big Mess' construction in English, in which under certain circumstances adjectival expressions appear before the determiner (as in 'that big a mess'), rather than in the normal position between the determiner and noun ('a very big mess', compare '*a that big mess'). Empirically, the analysis is superior in coverage to existing treatments

Palliative care initiation in pediatric oncology patients: A systematic review

Palliative care (PC) aims to improve quality of life for patients and their families. The World Health Organization and American Academy of Pediatrics recommend that PC starts at diagnosis for children with cancer. This systematic review describes studies that reported PC timing in the pediatric oncology population. The following databases were searched: PubMed, Web of Science, CINAHL, and PsycInfo databases. Studies that reported time of PC initiation were independently screened and reviewed by 2 researchers. Studies describing pilot initiatives, published prior to 1998, not written in English, or providing no empirical time information on PC were excluded. Extracted data included sample characteristics and timing of PC discussion and initiation. Of 1120 identified citations, 16 articles met the inclusion criteria and comprised the study cohort. Overall, 54.5% of pediatric oncology patients received any palliative service prior to death. Data revealed PC discussion does not occur until late in the illness trajectory, and PC does not begin until close to time of death. Despite efforts to spur earlier initiation, many pediatric oncology patients do not receive any palliative care service, and those who do, predominantly receive it near the time of death. Delays occur both at first PC discussion and at PC initiation. Efforts for early PC integration must recognize the complex determinants of PC utilization across the illness timeline

Nominal juxtaposition in Australian languages: An LFG analysis

It is well known that Australian languages make heavy use of nominal juxtaposition in a wide variety of functions, but there is little discussion in the theoretical literature of how such juxtapositions should be analysed. We discuss a range of data from Australian languages illustrating how multiple nominals share a single grammatical function within the clause. We argue that such constructions should be treated syntactically as set-valued grammatical functions in Lexical-Functional Grammar (LFG). Sets as values for functions are well-established in LFG and are used in the representation of adjuncts, and also in the representation of coordination. In many Australian languages, coordination is expressed asyndetically, that is, by nominal juxtaposition with no overt coordinator at all. We argue that the syntactic similarity of all juxtaposed constructions (ranging from coordination through a number of more appositional relations) motivates an analysis in which they are treated similarly in the syntax, but suitably distinguished in the semantics. We show how this can be achieved within LFG, providing a unified treatment of the syntax of juxtaposition in Australian languages and showing how the interface to the semantics can be quite straightforwardly defined in the modular LFG approach. Copyright © Cambridge University Press 2009

Integrated Reconnaissance of the Physical and Biogeochemical Characteristics of Jamaica Bay

Researchers at The Earth Institute of Columbia University have carried out an integrated, coordinated pilot reconnaissance of the physical, chemical, geological, and biological systems within Jamaica Bay, entitled "Integrated Reconnaissance of the Physical and Biogeochemical Characteristics of Jamaica Bay." We believe that such an integrated approach is necessary to fully understand the complex inter-relationship of the wetland ecosystem. The program focused on obtaining a synergistic view of the varied elements of Jamaica Bay by carrying out coordinated research in four areas: submarine sediment morphology, sediment and soil sampling, circulation and mixing, and chemical analysis of the Bay waters

Leber Congenital Amaurosis: Comprehensive Survey of the Genetic Heterogeneity, Refinement of the Clinical Definition, and Genotype-Phenotype Correlations as a Strategy for Molecular Diagnosis

Communicated by Jean-Claude Kaplan Leber congenital amaurosis (LCA) is the earliest and most severe form of all inherited retinal dystrophies, responsible for congenital blindness. Disease-associated mutations have been hitherto reported in seven genes. These genes are all expressed preferentially in the photoreceptor cells or the retinal pigment epithelium but they are involved in strikingly different physiologic pathways resulting in an unforeseeable physiopathologic variety. This wide genetic and physiologic heterogeneity that could largely increase in the coming years, hinders the molecular diagnosis in LCA patients. The genotyping is, however, required to establish genetically defined subgroups of patients ready for therapy. Here, we report a comprehensive mutational analysis of the all known genes in 179 unrelated LCA patients, including 52 familial and 127 sporadic (27/127 consanguineous) cases. Mutations were identified in 47.5% patients. GUCY2D appeared to account for most LCA cases of our series (21.2%), followed by CRB1 (10%), RPE65 (6.1%), RPGRIP1 (4.5%), AIPL1 (3.4%), TULP1 (1.7%), and CRX (0.6%). The clinical history of all patients with mutations was carefully revisited to search for phenotype variations. Sound genotype-phenotype correlations were found that allowed us to divide patients into two main groups. The first one includes patients whose symptoms fit the traditional definition of LCA, i.e., congenital or very early cone-rod dystrophy, while the second group gathers patients affected with severe yet progressive rodcone dystrophy. Besides, objective ophthalmologic data allowed us to subdivide each group into two subtypes. Based on these findings, we have drawn decisional flowcharts directing the molecular analysis of LCA genes in a given case. These flowcharts will hopefully lighten the heavy task of genotyping new patients but only if one has access to the most precise clinical history since birth

An Observationally Constrained Evaluation of the Oxidative Capacity in the Tropical Western Pacific Troposphere

Hydroxyl radical (OH) is the main daytime oxidant in the troposphere and determines the atmospheric lifetimes of many compounds. We use aircraft measurements of O3, H2O, NO, and other species from the Convective Transport of Active Species in the Tropics (CONTRAST) field campaign, which occurred in the tropical western Pacific (TWP) during January–February 2014, to constrain a photochemical box model and estimate concentrations of OH throughout the troposphere. We find that tropospheric column OH (OHCOL) inferred from CONTRAST observations is 12 to 40% higher than found in chemical transport models (CTMs), including CAM-chem-SD run with 2014 meteorology as well as eight models that participated in POLMIP (2008 meteorology). Part of this discrepancy is due to a clear-sky sampling bias that affects CONTRAST observations; accounting for this bias and also for a small difference in chemical mechanism results in our empirically based value of OHCOL being 0 to 20% larger than found within global models. While these global models simulate observed O3 reasonably well, they underestimate NOx (NO + NO2) by a factor of two, resulting in OHCOL ~30% lower than box model simulations constrained by observed NO. Underestimations by CTMs of observed CH3CHO throughout the troposphere and of HCHO in the upper troposphere further contribute to differences between our constrained estimates of OH and those calculated by CTMs. Finally, our calculations do not support the prior suggestion of the existence of a tropospheric OH minimum in the TWP, because during January–February 2014 observed levels of O3 and NO were considerably larger than previously reported values in the TWP

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

Effect of Hydrocortisone on Mortality and Organ Support in Patients With Severe COVID-19: The REMAP-CAP COVID-19 Corticosteroid Domain Randomized Clinical Trial.

Importance: Evidence regarding corticosteroid use for severe coronavirus disease 2019 (COVID-19) is limited. Objective: To determine whether hydrocortisone improves outcome for patients with severe COVID-19. Design, Setting, and Participants: An ongoing adaptive platform trial testing multiple interventions within multiple therapeutic domains, for example, antiviral agents, corticosteroids, or immunoglobulin. Between March 9 and June 17, 2020, 614 adult patients with suspected or confirmed COVID-19 were enrolled and randomized within at least 1 domain following admission to an intensive care unit (ICU) for respiratory or cardiovascular organ support at 121 sites in 8 countries. Of these, 403 were randomized to open-label interventions within the corticosteroid domain. The domain was halted after results from another trial were released. Follow-up ended August 12, 2020. Interventions: The corticosteroid domain randomized participants to a fixed 7-day course of intravenous hydrocortisone (50 mg or 100 mg every 6 hours) (n = 143), a shock-dependent course (50 mg every 6 hours when shock was clinically evident) (n = 152), or no hydrocortisone (n = 108). Main Outcomes and Measures: The primary end point was organ support-free days (days alive and free of ICU-based respiratory or cardiovascular support) within 21 days, where patients who died were assigned -1 day. The primary analysis was a bayesian cumulative logistic model that included all patients enrolled with severe COVID-19, adjusting for age, sex, site, region, time, assignment to interventions within other domains, and domain and intervention eligibility. Superiority was defined as the posterior probability of an odds ratio greater than 1 (threshold for trial conclusion of superiority >99%). Results: After excluding 19 participants who withdrew consent, there were 384 patients (mean age, 60 years; 29% female) randomized to the fixed-dose (n = 137), shock-dependent (n = 146), and no (n = 101) hydrocortisone groups; 379 (99%) completed the study and were included in the analysis. The mean age for the 3 groups ranged between 59.5 and 60.4 years; most patients were male (range, 70.6%-71.5%); mean body mass index ranged between 29.7 and 30.9; and patients receiving mechanical ventilation ranged between 50.0% and 63.5%. For the fixed-dose, shock-dependent, and no hydrocortisone groups, respectively, the median organ support-free days were 0 (IQR, -1 to 15), 0 (IQR, -1 to 13), and 0 (-1 to 11) days (composed of 30%, 26%, and 33% mortality rates and 11.5, 9.5, and 6 median organ support-free days among survivors). The median adjusted odds ratio and bayesian probability of superiority were 1.43 (95% credible interval, 0.91-2.27) and 93% for fixed-dose hydrocortisone, respectively, and were 1.22 (95% credible interval, 0.76-1.94) and 80% for shock-dependent hydrocortisone compared with no hydrocortisone. Serious adverse events were reported in 4 (3%), 5 (3%), and 1 (1%) patients in the fixed-dose, shock-dependent, and no hydrocortisone groups, respectively. Conclusions and Relevance: Among patients with severe COVID-19, treatment with a 7-day fixed-dose course of hydrocortisone or shock-dependent dosing of hydrocortisone, compared with no hydrocortisone, resulted in 93% and 80% probabilities of superiority with regard to the odds of improvement in organ support-free days within 21 days. However, the trial was stopped early and no treatment strategy met prespecified criteria for statistical superiority, precluding definitive conclusions. Trial Registration: ClinicalTrials.gov Identifier: NCT02735707