Use of a web-based portal to return normal individual research results in Early Check: Exploring user behaviors and attitudes.

Early Check is a voluntary, large-scale expanded newborn screening study in North Carolina that uses a self-directed web-based portal for return of normal individual research results (IRR). Little is known about participant perspectives in using web-based portals to receive IRR. This study explored user attitudes and behaviors within the Early Check portal using three methods: (1) a feedback survey available to the consenting parent of participating infants (typically mothers), (2) semi-structured interviews conducted with a subset of parents, and (3) Google Analytics. During an approximate 3-year period, 17 936 newborns received normal IRR and there were 27 812 visits to the portal. Most surveyed parents reported viewing their baby's results (86%, 1410/1639). Parents largely found the portal easy to use to get results, and helpful in understanding the results. However, 10% of parents said it was difficult to find enough information to understand their baby's results. In Early Check, providing normal IRR via the portal made a large-scale study practical, and was highly rated by most users. Return of normal IRR may be particularly amenable to web-based portals, as the consequences to participants from not viewing results are modest, and the interpretation of a normal result is relatively straightforward.

Neurophysiological correlates of sevoflurane-induced unconsciousness.

BACKGROUND: Recent studies of anesthetic-induced unconsciousness in humans have focused predominantly on the intravenous drug propofol and have identified anterior dominance of alpha rhythms and frontal phase-amplitude coupling patterns as neurophysiological markers. However, it is unclear whether the correlates of propofol-induced unconsciousness are generalizable to inhaled anesthetics, which have distinct molecular targets and which are used more commonly in clinical practice. METHODS: The authors recorded 64-channel electroencephalograms in healthy human participants during consciousness, sevoflurane-induced unconsciousness, and recovery (n = 10; n = 7 suitable for analysis). Spectrograms and scalp distributions of low-frequency (1 Hz) and alpha (10 Hz) power were analyzed, and phase-amplitude modulation between these two frequencies was calculated in frontal and parietal regions. Phase lag index was used to assess phase relationships across the cortex. RESULTS: At concentrations sufficient for unconsciousness, sevoflurane did not result in a consistent anteriorization of alpha power; the relationship between low-frequency phase and alpha amplitude in the frontal cortex did not undergo characteristic transitions. By contrast, there was significant cross-frequency coupling in the parietal region during consciousness that was not observed after loss of consciousness. Furthermore, a reversible disruption of anterior-posterior phase relationships in the alpha bandwidth was identified as a correlate of sevoflurane-induced unconsciousness. CONCLUSION: In humans, sevoflurane-induced unconsciousness is not correlated with anteriorization of alpha and related cross-frequency patterns, but rather by a disruption of phase-amplitude coupling in the parietal region and phase-phase relationships across the cortex.

Influence of Ventilation Strategies and Anesthetic Techniques on Regional Cerebral Oximetry in the Beach Chair Position: A Prospective Interventional Study with a Randomized Comparison of Two Anesthetics.

BACKGROUND: Beach chair positioning during general anesthesia is associated with cerebral oxygen desaturation. Changes in cerebral oxygenation resulting from the interaction of inspired oxygen fraction (FIO2), end-tidal carbon dioxide (PETCO2), and anesthetic choice have not been fully evaluated in anesthetized patients in the beach chair position. METHODS: This is a prospective interventional within-group study of patients undergoing shoulder surgery in the beach chair position that incorporated a randomized comparison between two anesthetics. Fifty-six patients were randomized to receive desflurane or total intravenous anesthesia with propofol. Following induction of anesthesia and positioning, FIO2 and minute ventilation were sequentially adjusted for all patients. Regional cerebral oxygenation (rSO2) was the primary outcome and was recorded at each of five set points. RESULTS: While maintaining FIO2 at 0.3 and PETCO2 at 30 mmHg, there was a decrease in rSO2 from 68% (SD, 12) to 61% (SD, 12) (P < 0.001) following beach chair positioning. The combined interventions of increasing FIO2 to 1.0 and increasing PETCO2 to 45 mmHg resulted in a 14% point improvement in rSO2 to 75% (SD, 12) (P <0.001) for patients anesthetized in the beach chair position. There was no significant interaction effect of the anesthetic at the study intervention points. CONCLUSIONS: Increasing FIO2 and PETCO2 resulted in a significant increase in rSO2 that overcomes desaturation in patients anesthetized in the beach chair position and that appears independent of anesthetic choice.

Social support during delivery in rural central Ghana: a mixed methods study of women's preferences for and against inclusion of a lay companion in the delivery room.

This study aimed to explore pregnant women's attitudes towards the inclusion of a lay companion as a source of social support during labour and delivery in rural central Ghana. Quantitative demographic and pregnancy-related data were collected from 50 pregnant women presenting for antenatal care at a rural district hospital and analysed using STATA/IC 11.1. Qualitative attitudinal questions were collected from the same women through semi-structured interviews; data were analysed using NVivo 9.0. Twenty-nine out of 50 women (58%) preferred to have a lay companion during facility-based labour and delivery, whereas 21 (42%) preferred to deliver alone with the nurses in a facility. Women desiring a companion were younger, had more antenatal care visits, had greater educational attainment and were likely to be experiencing their first delivery. Women varied in the type of companion they prefer (male partner vs female relative). What was expected in terms of social support differed based upon the type of companion. Male companions were expected to provide emotional support and to 'witness her pain'. Female companions were expected to provide emotional support as well as instrumental, informational and appraisal support. Three qualitative themes were identified that run counter to the inclusion of a lay helper: fear of an evil-spirited companion, a companion not being necessary or helpful, and being 'too shy' of a companion. This research challenges the assumption of a unilateral desire for social support during labour and delivery, and suggests that women differ in the type of companion and type of support they prefer during facility deliveries. Future research is needed to determine the direction of the relationship--whether women desire certain types of support and thus choose companions they believe can meet those needs, or whether women desire a certain companion and adjust their expectations accordingly.

Education and Consent for Population-Based DNA Screening: A Mixed-Methods Evaluation of the Early Check Newborn Screening Pilot Study.

A challenge in implementing population-based DNA screening is providing sufficient information, that is, understandable and acceptable, and that supports informed decision making. Early Check is an expanded newborn screening study offered to mothers/guardians whose infants have standard newborn screening in North Carolina. We developed electronic education and consent to meet the objectives of feasibility, acceptability, trustworthiness, and supporting informed decisions. We used two methods to evaluate Early Check among mothers of participating infants who received normal results: an online survey and interviews conducted via telephone. Survey and interview domains included motivations for enrollment, acceptability of materials and processes, attitudes toward screening, knowledge recall, and trust. Quantitative analyses included descriptive statistics and assessment of factors associated with knowledge recall and trust. Qualitative data were coded, and an inductive approach was used to identify themes across interviews. Survey respondents (n = 1,823) rated the following as the most important reasons for enrolling their infants: finding out if the baby has the conditions screened (43.0%), and that no additional blood samples were required (20.1%). Interview respondents (n = 24) reported the value of early knowledge, early intervention, and ease of participation as motivators. Survey respondents rated the study information as having high utility for decision making (mean 4.7 to 4.8 out of 5) and 98.2% agreed that they had sufficient information. Knowledge recall was relatively high (71.8-92.5% correct), as was trust in Early Check information (96.2% strongly agree/agree). Attitudes about Early Check screening were positive (mean 0.1 to 0.6 on a scale of 0-4, with lower scores indicating more positive attitudes) and participants did not regret participation (e.g., 98.6% strongly agreed/agreed Early Check was the right decision). Interview respondents further reported positive attitudes about Early Check materials and processes. Early Check provides a model for education and consent in large-scale DNA screening. We found evidence of high acceptability, trustworthiness and knowledge recall, and positive attitudes among respondents. Population-targeted programs need to uphold practices that result in accessible information for those from diverse backgrounds. Additional research on those who do not select screening, although ethically and practically challenging, is important to inform population-based DNA screening practices.

Adolescent Use and Perceptions of JUUL and Other Pod-Style e-Cigarettes: A Qualitative Study to Inform Prevention.

JUUL, a discrete pod-style e-cigarette, popular among adolescents, delivers high levels of nicotine. Limited research has assessed social and environmental influences that contribute to use of JUUL and other pod-style devices. We examined how these factors, as well as individual characteristics, shape adolescent use. Twenty-nine middle and high school students participated in six focus groups in June 2019 (58.6% female, 65.5% White, 27.6% Hispanic). Groups were stratified by e-cigarette use status and grade to understand perceptions and experiences among groups. Transcripts were coded using thematic analysis for individual, social, and environmental factors contributing to use. Users (n = 13) described their first experience with JUUL as mostly negative, mentioning reactions such as burning in the throat, coughing, wheezing, and headaches. Despite a negative first experience, stress relief and addiction were mentioned as reasons for continued use. Users and non-users identified vaping as a source of disruption to their daily life. Social factors included peer and parental influences, lack of support for quitting, and accessibility. Environmental factors included contrasting messages about long- and short-term health effects of e-cigarettes, as well as a lack of school vaping policy enforcement, health education, medical screenings, and cessation resources. Findings highlight the complex social system that influences adolescent e-cigarette use and have important implications for school and community responses. Strategies to prevent or reduce use may include reviewing existing school tobacco policies, providing counseling and cessation resources, training staff, and increasing knowledge through public education campaigns.

APOL1 Long-term Kidney Transplantation Outcomes Network (APOLLO): Design and Rationale.

INTRODUCTION: Much of the higher risk for end-stage kidney disease (ESKD) in African American individuals relates to ancestry-specific variation in the apolipoprotein L1 gene (APOL1). Relative to kidneys from European American deceased-donors, kidneys from African American deceased-donors have shorter allograft survival and African American living-kidney donors more often develop ESKD. The National Institutes of Health (NIH)-sponsored APOL1 Long-term Kidney Transplantation Outcomes Network (APOLLO) is prospectively assessing kidney allograft survival from donors with recent African ancestry based on donor and recipient APOL1 genotypes. METHODS: APOLLO will evaluate outcomes from 2614 deceased kidney donor-recipient pairs, as well as additional living-kidney donor-recipient pairs and unpaired deceased-donor kidneys. RESULTS: The United Network for Organ Sharing (UNOS), Association of Organ Procurement Organizations, American Society of Transplantation, American Society for Histocompatibility and Immunogenetics, and nearly all U.S. kidney transplant programs, organ procurement organizations (OPOs), and histocompatibility laboratories are participating in this observational study. APOLLO employs a central institutional review board (cIRB) and maintains voluntary partnerships with OPOs and histocompatibility laboratories. A Community Advisory Council composed of African American individuals with a personal or family history of kidney disease has advised the NIH Project Office and Steering Committee since inception. UNOS is providing data for outcome analyses. CONCLUSION: This article describes unique aspects of the protocol, design, and performance of APOLLO. Results will guide use of APOL1 genotypic data to improve the assessment of quality in deceased-donor kidneys and could increase numbers of transplanted kidneys, reduce rates of discard, and improve the safety of living-kidney donation.

The skeleton in the closet: should historians of science care about the history of mathematics?

Up until the 1950s, the history of mathematics was an integral part of the history of science. To George Sarton and his contemporaries, mathematics was the rational skeleton that organized science and held it together, and its history was a fundamental component of the broader history of science. But when historians began focusing on the cultural roots of science rather than its rational structure, the study of mathematics was marginalized and ultimately excluded from the history of science. The alienation between the two fields is detrimental to both, and in recent years there has been a sustained effort to reestablish meaningful communication between the two. This time, however, mathematics is seen not as the static skeleton of science but, instead, as a dynamic and historically evolving field in its own right-just like science itself. The new approach allows for a culturally sensitive study of mathematics, as well as a new and fruitful relationship between the history of science and the history of mathematics. The essays in this Focus section offer a sampling of the new approaches, opening the way to a rapprochement between fields that have gone their separate ways but should by rights be closely interconnected.

Tragic mathematics: romantic narratives and the refounding of mathematics in the early nineteenth century.

A new, Romantic type of mathematical story appeared in the early nineteenth century that was radically different from the sober narrative characteristic of the previous generation of mathematicians. At the same time, a new mathematical practice emerged that differed sharply from the understanding and practice of mathematics during the Enlightenment. These parallel developments are inseparable: the new type of mathematical practice went hand in hand with the new mathematical story.