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One in five children who undergo cardiac surgery report experiencing moderate to severe pain lasting more than 3 months after surgery which has a significant impact on quality of life. iCanCope with PostOperative Pain (“iCanCope POP”) is a smartphone app that provides adolescents with evidence-based strategies to manage postoperative pain. The goal of this study was to explore the unique needs and pain-management experiences of youth undergoing cardiac surgery to inform the development of a tailored iteration of iCanCope POP.
Methods:
A descriptive qualitative design using semi-structured interviews and focus groups was conducted with adolescents ages 12–18 who had received cardiac surgery, caregivers of youth undergoing cardiac surgery, and interdisciplinary healthcare providers (HCPs). Qualitative data were inductively and deductively coded using a content analysis approach to outline participants’ pain management experiences and perspectives on the iCanCope POP app.
Results:
14 interviews and 1 focus group were completed with 6 children, 6 parents, and 12 HCPs (n = 24 participants). Content analysis resulted in 3 key categories: 1. Riding the rollercoaster of the surgical journey (e.g., ups and downs of pre- and post-operative phases); 2. Postoperative pain experience (e.g., tubes, technologies, and devices; pain management strategies); and 3. App feedback (e.g., usefulness, appropriateness, suggested modifications).
Discussion/conclusion:
Participants reported significant challenges during the perioperative pediatric cardiac surgery journey and identified potential opportunities for a tailored mobile self-management app to improve their surgical experience. Future research should use these perspectives to inform a new iteration of the iCanCope POP app for youth undergoing cardiac surgery.
In 1987, LeAnn Fields acquired Lynda Hart‘s Making a Spectacle: Feminist Essays on Contemporary Women’s Theatre. By the time Fields retired in 2024, she had built a list of more than 280 books in the field of theatre and performance studies at the University of Michigan Press. Hart’s Making a Spectacle is a foundational and still radical book of critical essays on gender, the body, and spectatorship, topics that continue to chart and reverberate among the many intellectual commitments of our field. Like nearly all the books that Fields acquired for University of Michigan Press, Making a Spectacle drew from and responded to another interdisciplinary field of study, women’s studies, as it simultaneously broke new ground in theatre and performance studies. In this special section, thirteen authors discuss the ways in which Fields encouraged the development of their work and our field. These author accounts are followed by an interview with Fields by Jill Dolan, in which Fields describes how her work as an acquisitions editor began and how it changed, how she navigated the press boards and changes in technology and staffing, and how, from her perspective, our field fosters a unique sense of community. The author accounts and interview offer an invaluable collection of personal histories that trace the development of our field over the past four decades to our vibrant present.
Social media has the potential to reshape rural agriculture in developing nations in ways that differ from other Information and Communication Technologies (ICTs) because the communication method is mediated through social capital that expands and strengthens relationships. This paper uses two quasi-experimental approaches to estimate the impact of four different communication treatments (including three ICTs) on production practices of small-scale farmers in Rondônia, Brazil. Our difference-in-differences estimation controls for time-invariant unobservable differences in the characteristics of households that do and do not engage with ICTs and draws on a panel from 2009 and 2019. Our propensity score matching is estimated with over 1,200 farmer households surveyed in 2019. We find that the use of social media increases the uptake of both old and new pasture management and cattle practices that are promoted by state and federal agencies via their social media feeds. We also test the impact of the interaction between social media and extension agent visits and find evidence appear to operate independently, potentially as substitutes. Our results suggest that social media is an effective and low-cost way for extension agencies to reach farmers, although we are uncertain as to whether these effects would be stronger with targeted extension visits that use social media to reinforce messaging.
Wiedemann-Steiner syndrome (WSS) is a rare Mendelian disorder of epigenetic machinery caused by a mutation in KMT2A, with hallmark features that include intellectual disability and developmental delay. Animal models have helped identify the critical roles KMT2A plays in prefrontal neuron maturation and executive function (i.e. working memory) development. However, the neurobehavioral phenotype of individuals with WSS, including executive functioning, remains poorly characterized. Accordingly, this study aimed to 1.) examine the neurobehavioral profile (adaptive, psychosocial, and executive functioning) associated with WSS and 2.) the correlations between executive functioning and these domains.
Participants and Methods:
A total of 25 mothers of individuals with WSS (13 females, Mean age=12.78 years, SD=7.88) completed a combination of parent-informant questionnaires. The caregivers completed the Adaptive Behavior Assessment System 3rd Edition (ABAS-3), the Strengths and Difficulties Questionnaire (SDQ), and a version of the Behavior Rating Inventory of Executive Function (BRIEF). Descriptive analyses were conducted to examine proportion of the sample with clinically significant concerns on the BRIEF and SDQ, and low to very low adaptive skills based on ratings on the ABAS-3. Partial correlations were computed to examine the relationships between overall executive functioning (BRIEF General Executive Composite, GEC) with adaptive domains (ABAS-3 Conceptual, Practical, Social), and psychosocial functioning (SDQ Emotional Problems, Conduct Problems, Hyperactivity, Peer Relations, Prosocial Behaviors) while accounting for age. Associations that survived Benjamin Hochberg correction are reported.
Results:
Of our sample, 64% were rated in the very elevated range for executive functioning problems (BRIEF GEC), with a greater proportion endorsing clinically significant concerns with behavior regulation (68%) relative to cognitive regulation (48%). Majority of participants was rated in the low or very low range for ABAS-3 General Adaptive Composite (72%), with a greater proportion showing problems in Practical (64%) and Conceptual Domains (64%) relative to Social Domain (44%). Among those who completed the SDQ, caregiver ratings implicate elevated Total Problems (90%) with greater concerns observed in Emotional Problems (62%), Hyperactivity (81%) and Peer Relationship difficulties (95%). After controlling for age, executive functioning difficulties were associated with weaker skills in the Conceptual (r=-0.56, p=0.003), Social (r=-0.44, p=0.028) and Practical domains (r=-0.51, p=0.009); as well as more Hyperactivity (r=0.49, p=0.025) and Conduct problems (r=0.58, p=0.007). Specifically, day-to-day challenges with executive functions were related to weaker adaptive skills in Self-Care (r=-0.54, p=0.006), Self-Direction (r=-0.53, p=0.007), and Communication (r=-0.49, p=0.01).
Conclusions:
Individuals with WSS are at risk for executive functioning deficits, which in turn may impact the development of and/or day-today application of adaptive skills and behavior regulation. Future clinical research should further explore the development and neurophysiology of executive functions among those with WSS with multidisciplinary methods, including behavioral, cognitive and neurobiological metrics. Those working with individuals with WSS may consider executive functioning interventions, which may yield indirect benefits to self-regulation and daily use of life skills.
Predeath grief conceptualizes complex feelings of loss experienced for someone who is still living and is linked to poor emotional well-being. The Road Less Travelled program aimed to help carers of people with rarer dementias identify and process predeath grief. This study evaluated the feasibility, acceptability, and preliminary effectiveness of this program.
Design:
Pre–post interventional mixed methods study.
Setting:
Online videoconference group program for carers across the UK held in 2021.
Participants:
Nine family carers of someone living with a rare form of dementia. Eight were female and one male (mean age 58) with two facilitators.
Intervention:
The Road Less Travelled is an online, facilitated, group-based program that aims to help carers of people with rarer dementias to explore and accept feelings of grief and loss. It involved six fortnightly 2-hour sessions.
Measurements:
We collected measures for a range of well-being outcomes at baseline (T1), post-intervention (T2), and 3 months post-intervention (T3). We conducted interviews with participants and facilitators at T2.
Results:
Participant attendance was 98% across all sessions. Findings from the semistructured interviews supported the acceptability of the program and identified improvements in carer well-being. Trends in the outcome measures suggested an improvement in quality of life and a reduction in depression.
Conclusion:
The program was feasible to conduct and acceptable to participants. Qualitative reports and high attendance suggest perceived benefits to carers, including increased acceptance of grief, and support the need for a larger-scale pilot study to determine effectiveness.
Early caregiving adversity (ECA) is associated with elevated psychological symptomatology. While neurobehavioral ECA research has focused on socioemotional and cognitive development, ECA may also increase risk for “low-level” sensory processing challenges. However, no prior work has compared how diverse ECA exposures differentially relate to sensory processing, or, critically, how this might influence psychological outcomes. We examined sensory processing challenges in 183 8-17-year-old youth with and without histories of institutional (orphanage) or foster caregiving, with a particular focus on sensory over-responsivity (SOR), a pattern of intensified responses to sensory stimuli that may negatively impact mental health. We further tested whether sensory processing challenges are linked to elevated internalizing and externalizing symptoms common in ECA-exposed youth. Relative to nonadopted comparison youth, both groups of ECA-exposed youth had elevated sensory processing challenges, including SOR, and also had heightened internalizing and externalizing symptoms. Additionally, we found significant indirect effects of ECA on internalizing and externalizing symptoms through both general sensory processing challenges and SOR, covarying for age and sex assigned at birth. These findings suggest multiple forms of ECA confer risk for sensory processing challenges that may contribute to mental health outcomes, and motivate continuing examination of these symptoms, with possible long-term implications for screening and treatment following ECA.
Racially and ethnically minoritized populations have been historically excluded and underrepresented in research. This paper will describe best practices in multicultural and multilingual awareness-raising strategies used by the Recruitment Innovation Center to increase minoritized enrollment into clinical trials. The Passive Immunity Trial for Our Nation will be used as a primary example to highlight real-world application of these methods to raise awareness, engage community partners, and recruit diverse study participants.
Wiedemann-Steiner syndrome (WSS) is a rare Mendelian disorder of the epigenetic machinery caused by heterozygous pathogenic variants in KMT2A. Currently, the specific neurocognitive profile of this syndrome remains unknown. This case series provides insight into the cognitive phenotype of WSS.
Methods:
This study involves a retrospective medical chart review of 10 pediatric patients, each with a molecularly confirmed diagnosis of WSS who underwent clinical neuropsychological evaluation at an academic medical center.
Results:
The majority of patients performed in the below average to very low ranges in Nonverbal Reasoning, Visual/Spatial Perception, Visuoconstruction, Visual Memory, Attention, Working Memory and Math Computation skills. In contrast, over half the sample performed within normal limits on Receptive Vocabulary, Verbal Memory, and Word Reading. Wilcoxon signed rank test showed weaker Nonverbal versus Verbal Reasoning skills (p = .005). Most caregivers reported deficits in executive functioning, most notably in emotion regulation.
Conclusions:
Nonverbal reasoning/memory, visuospatial/construction, attention, working memory, executive functioning, and math computation skills are areas of weakness among those with WSS. These findings overlap with research on Kabuki syndrome, which is caused by variants in KMT2D, and suggest disruption in the neurogenesis of the hippocampal formation may drive shared pathogenesis of the two syndromes.
For decades, the research community called for streamlined Institutional Review Board (IRB) review processes for multisite studies. Department of Health and Human Services and National Institutes of Health (NIH) recognized this need and implemented single IRB (sIRB) of record mandates. However, announcing mandates without sufficient operational guidance and tools is insufficient to foster the desired change. Nearly 4 years into implementation of the NIH’s sIRB mandate, operational challenges remain. Fortunately, NIH supports a web-based sIRB platform, the IRB Reliance Exchange (IREx), to facilitate sIRB communication and documentation. IREx has received continuous NIH funding supporting its evolution since 2011 and is now used by over 5,000 Human Research Protection Program and research personnel, 35 sIRBs, and 415 participating sites to operationalize sIRB review and approval on over 400 studies. IREx supports over 2300 reliance relationships with an average of 7 sites per study. The platform is continually used by sIRBs and relying sites, providing a valuable centralized portal for promoting a harmonized sIRB review process. IREx can promote transparency, standardize practice, minimize workflow variation, and mitigate the need for sIRBs to implement significant technical changes to their local electronic systems. IREx has proven to be nimble and adaptable with practice and policy changes over the past decade, as evidenced by continually increasing platform utilization.
Clinical trials continue to face significant challenges in participant recruitment and retention. The Recruitment Innovation Center (RIC), part of the Trial Innovation Network (TIN), has been funded by the National Center for Advancing Translational Sciences of the National Institutes of Health to develop innovative strategies and technologies to enhance participant engagement in all stages of multicenter clinical trials. In collaboration with investigator teams and liaisons at Clinical and Translational Science Award institutions, the RIC is charged with the mission to design, field-test, and refine novel resources in the context of individual clinical trials. These innovations are disseminated via newsletters, publications, a virtual toolbox on the TIN website, and RIC-hosted collaboration webinars. The RIC has designed, implemented, and promised customized recruitment support for 173 studies across many diverse disease areas. This support has incorporated site feasibility assessments, community input sessions, recruitment materials recommendations, social media campaigns, and an array of study-specific suggestions. The RIC’s goal is to evaluate the efficacy of these resources and provide access to all investigating teams, so that more trials can be completed on time, within budget, with diverse participation, and with enough accrual to power statistical analyses and make substantive contributions to the advancement of healthcare.
Discussions about increasing diversity in economics have ignored the role that associations play in the engagement of underrepresented economists. We continue work on diversity and inclusion in the Northeastern Agriculture and Resource Economics Association (NAREA) and other associations by analyzing membership and meeting attendance to promote diversity in economics. We estimate a vector error correction model (VECM) to identify the determinants of membership and meeting attendance and use member survey data to model membership and meeting attendance behavior. We find inequalities across gender, income, and professional status. Recommendations include locating meetings in accessible cities, increasing networking opportunities, and providing more services supporting underrepresented groups.
Schoenaster carterensis new species, is an asteroid-like ophiuroid (Echinodermata) from Upper Mississippian (Chesterian) shallow-water carbonates in the Ramey Creek Member of the Slade Formation in northeastern Kentucky. First described in the 1860s from Lower and Middle Mississippian rocks, Schoenaster Meek and Worthen, 1860 is not a well-known fossil genus, but the 39 specimens in this collection permitted further definition of the genus and extended its range by ca. 17 Ma into Late Mississippian (Chesterian) time. The number of specimens also permitted differentiation of growth stages based on average arm length and showed that arm length, disk perimeter, and disk area are interrelated in statistically significant ways. Although replaced by chert, the specimens are nearly intact due to rapid burial as rare constituents in habitat communities distributed among four once-contiguous habitats, including shoal, shoal margin, transitional, and basinal. Most of the ophiuroids were concentrated on firm grounds or hardgrounds in shoal and transitional environments, concentrations that probably reflect substratum stability and the ability to support the ophiuroid's generalist feeding strategy. Many fossil ophiuroid species are known from only a few specimens, severely limiting interpretations about their detailed taxonomy, individual variation, and ecology. In contrast, the greater number of specimens and extensive knowledge of geologic occurrence in this study permitted detailed interpretations regarding the taxonomic, intraspecific, and ecologic attributes of this species, which might be useful in the study of other fossil ophiuroids.
Individuals experiencing different medical conditions, as well as healthy volunteers, may often be interested in trial participation, and researchers similarly need to find participants to advance medical knowledge. The ResearchMatch (RM) Trials Today clinical trial searching tool leverages clinicaltrials.gov data to enable potential participants to look for trial opportunities relevant to their situation. To facilitate expanded use of this tool, we undertook a national digital public awareness campaign to increase awareness of Trials Today among members of the general public.
Methods:
The awareness campaign promoted Trials Today using Facebook and digital banner messages in 2017, encompassing nine cities across the USA. The digital strategy was complemented by print media in several outlets. We employed descriptive statistics to summarize campaign metrics and site usage data during the campaign.
Results:
The campaign was successful in increasing visits to Trials Today, with 142,303 sessions logged during its run, as compared to pre-campaign data indicating 104,688 total sessions during the entire 2-year period since the site’s inception. The city-specific click-through rate for all digital impressions, combining Facebook and banner messaging, ranged from 0.50% to 1.09%, resulting in a cost-per-click range of $0.69–$1.15. In addition, visitors conducted 29,697 searches and viewed individual trial records 173,512 times.
Conclusion:
The public awareness campaign was successful in increasing use of the RM Trials Today clinical trial searching tool. Our findings support the value of digital media messaging as a cost-effective vehicle for promoting clinical trial awareness, especially for chronic ailments.
The Roman Empire benefited from legal pluralism. Civil law (ius civile) provided access to legal right (ius). Under the Roman Republic, it was expressed through statutes, resolutions of the Senate, edicts of magistrates, and interpretations by experts. Unwritten custom and equity were also recognized as determinants of legal decisions. From the first century CE, emperors, often responding to external prompts, legislated through edicts, legal letters, and rescripts. Law was also shaped and manipulated “on the ground” by advocates, petitioners, and judges. Many disputes were resolved informally by arbitration, negotiation, mediation, and powerful men. Bishops had been informal conciliators from the beginning, but from Constantine onward their judicial power was recognized officially in the context of the episcopal hearing (episcopalis audientia). In Late Antiquity, Diocletian, Theodosius II, and Justinian commissioned “codifications” of imperial law. Justinian was the first to set Roman law in a Christian framework. While preserving the law’s past content, he aimed to suppress diversity in it henceforth.
Potential participants seek information about clinical trials for many reasons, but the process can be challenging. We analyzed 101,249 searches in ResearchMatch Trials Today, a free interface to recruiting trials from ClinicalTrials.gov. Searches from March 2015 to November 2016 included a broad range of conditions and healthy volunteer concepts, including 12,649 unique topics. Trials Today data indicate that it is being used to identify trials on a variety of topics.
Inefficiencies in the national clinical research infrastructure have been apparent for decades. The National Center for Advancing Translational Science—sponsored Clinical and Translational Science Award (CTSA) program is able to address such inefficiencies. The Trial Innovation Network (TIN) is a collaborative initiative with the CTSA program and other National Institutes of Health (NIH) Institutes and Centers that addresses critical roadblocks to accelerate the translation of novel interventions to clinical practice. The TIN’s mission is to execute high-quality trials in a quick, cost-efficient manner. The TIN awardees are composed of 3 Trial Innovation Centers, the Recruitment Innovation Center, and the individual CTSA institutions that have identified TIN Liaison units. The TIN has launched a national scale single (central) Institutional Review Board system, master contracting agreements, quality-by-design approaches, novel recruitment support methods, and applies evidence-based strategies to recruitment and patient engagement. The TIN has received 113 submissions from 39 different CTSA institutions and 8 non-CTSA Institutions, with projects associated with 12 different NIH Institutes and Centers across a wide range of clinical/disease areas. Already more than 150 unique health systems/organizations are involved as sites in TIN-related multisite studies. The TIN will begin to capture data and metrics that quantify increased efficiency and quality improvement during operations.