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The spectrum of communication abilities in children with 12 rare neurodevelopmental disorders: a qualitative study with caregivers
Get PDFBACKGROUND: Our aim was to update an existing model of communication ability for children with rare neurodevelopmental disorders (NDDs) by centring caregiver and family perspectives. This project is part of a larger initiative to improve the measurement of communication ability for these children in the context of clinical trials. METHODS: We conducted concept elicitation interviews with purposively selected clinical experts and caregivers of children with 12 NDDs, focusing on a broad definition of communication ability based on the Observer-Reported Communication Ability (ORCA) measure, which is inclusive of different communication modalities and covers expressive, receptive and pragmatic communication concepts. Content-based and thematic analysis was performed on the qualitative data. RESULTS: Altogether, 115 interviews were conducted with caregivers across the 12 NDDs and with 9 clinicians. Commonly mentioned concepts across NDDs included requesting an object, refusing an object, responding to familiar directions and seeking attention. There was notable heterogeneity within and across NDD groups in terms of the specific communication behaviours described for each communication concept. One common example was requesting; children used verbal speech, gestures, sign language, eye gaze, body movements and augmentative and assistive communication to ask for what they wanted. Novel communication concepts identified that were not part of the existing model were (1) feelings, emotions, and bodily sensations, (2) commenting on likes and dislikes, and (3) communicating and understanding humour. CONCLUSIONS: Caregivers offered a detailed and nuanced picture of their child's day-to-day communication. There was a considerable overlap between the communication concepts discussed by caregivers in the interviews and the existing conceptual model of communication ability. Some newly identified concepts underscore the need for further adaptation of the model and subsequent validation of any clinical outcome assessment before communication ability can be confidently measured for these individuals in clinical trials
Postoperative Lymph Is a Proximal Source of ctDNA for Detection of Recurrence in HPV-Independent Head and Neck Cancer.
Get PDFRelapse is a major cause of failure in human papillomavirus-independent head and neck squamous cell carcinoma. Clinicopathologic criteria for adjuvant treatment remain imprecise and have not changed for decades. We investigated whether ctDNA in lymphatic exudate collected via surgical drains ("lymph") 24 hours after surgery identified molecular residual disease (MRD) and compared its performance with time-matched plasma.Using an ultra-sensitive tumor-informed sequencing approach, tumor variants were called in lymph and plasma to classify patients as ctDNA positive or ctDNA negative, trained in an initial cohort of 36 patients, and replicated in an independent cohort of 37 patients. Progression-free survival was compared in ctDNA(+) versus ctDNA(-) patients.Lymph identified MRD in two independent multi-site cohorts (initial cohort sensitivity = 76% and specificity = 63%; log-rank P = 0.01; replication cohort sensitivity = 65% and specificity = 70%; log-rank P = 0.04). Lymph performance was enhanced in locoregional relapse (sensitivity = 78% and specificity = 67%; log-rank P = 0.0004) and generalized to early-stage patients. Analysis of matched plasma collected at this early timepoint was not predictive of recurrence (sensitivity = 35% and specificity = 72%; log-rank P = 0.7). In patients with intermediate-risk pathology, lymph ctDNA was associated with recurrence (sensitivity = 88% and specificity = 67%; log-rank P = 0.0008), suggesting an opportunity for improved stratification of patients who may benefit from additional adjuvant treatment.Postoperative lymph is a novel, proximal, and early source of MRD with the potential to introduce more precision into adjuvant therapy decision-making and improve outcomes, especially for patients with intermediate-risk human papillomavirus-independent head and neck squamous cell carcinoma
An ultrapotent human antibody neutralizes all maturation states of Zika virus.
Get PDFZika virus (ZIKV), a flavivirus, causes a range of clinical complications including microcephaly in human fetuses. Currently, there is no treatment or vaccine. Different maturation states (mature and immature forms) of flavivirus particles have been observed to be released from infected cells and are infectious. To understand how an ultrapotent human antibody (HMAb) A9E can neutralize these Zika particles, we determined the cryoEM structures of the A9E Fab fragment complexed with mature (mZIKV) and immature (immZIKV) ZIKV to 2.8Å and 7.5Å, respectively. A9E binds to an epitope spanning Domain I (EDI), EDIII, and their linker in an E protein protomer in both immZIKV and mZIKV particles. A9E generally inhibited prior to or during virus attachment to cells, via virus aggregation, distortion of virus particles and inhibition of receptor binding. ImmZIKV is particularly sensitive to structural distortion by Fab A9E. The primary mode of infection used by ImmZIKV is via antibody-dependent enhancement of infection (ADE)-the formation of virus complex with nonneutralizing or subneutralizing concentrations of antibodies, that leads to enhanced infection of Fcγ positive myeloid cells. IgG A9E, by itself displays poor ADE activity. When IgG LALA mutant or Fab A9E is added to other enhancing antibody (DV62.5):virus complexes, they can strongly reduce the overall ADE activity. This is likely due to their ability to distort virus particle structure, suggesting that HMAb A9E could be a potential prophylactic and therapeutic candidate against all maturation states of ZIKV
Prevalence and scholarly impact of observational versus experimental research in health psychology and behavioral medicine
Get PDFOBJECTIVE: This study examines what kinds of evidence are used and valued in advancing the goals of health psychology and behavioral medicine. As no systematic analysis of the prevalence and scholarly impact of different research designs appears to be available, the present research addressed three questions: How often are observational and experimental designs used in psychological research on health? Has the prevalence of these designs changed over time? And what is the scholarly impact of research using observational versus experimental designs? METHOD: All quantitative, empirical studies published in six prominent journals between 2012 and 2016, and during the first six months of 2024 were coded for use of observational and experimental designs. Citations were identified using Scopus. RESULTS: Observational studies were 2.3 times more prevalent than experimental studies during the period, 2012-2016 (69.4% vs. 30.6%) and were even more common in the first half of 2024 (77.1% vs. 22.9%). Citation rates for observational and experimental studies were equivalent (M = 31.2 and 33.0, respectively). CONCLUSIONS: This study indicates the prevalence and scholarly impact of different research designs in health psychology and behavioral medicine and offers a starting point for discussions concerning the optimal balance between observational and experimental research. The findings invite researchers to contemplate and debate what proportion of observational and experimental studies will best promote the goals of our field
Add Health as a Resource for the Science of the Exposome: National Land Cover Database (NLCD) Neighborhood Land Cover Measures
Get PDFUnder the Built Domain, this particular user guide summarizes the rationale for the construction and assignment of land use. It also documents how the land use source data were acquired, as well as the protocol for quality controlling their assignment and classification across waves. Whenever possible, construction, assignment, and classification were harmonized to ensure temporal comparability, although important inter-wave differences exist and are grey-highlighted herei
Add Health as a Resource for the Science of the Exposome: Structural Sexism Measures
Get PDFThe structural sexism dataset described in this user guide includes measures that capture the institutionalized and unequal distribution of power, rights, and resources by sex, with implications for gendered health disparities, across the following domains: sexual and reproductive health policy and access, family assistance policy, political representation, and health disparities. This structural sexism dataset is part of a larger data collection effort that was designed to help scientists more effectively operationalize and study the exposome – the constellation of social, economic, psychological, behavioral, environmental, and biological factors that combine to shape the onset and progression of chronic disease, morbidity, and mortality. The measures described in this guide were assembled, cleaned, and merged to Add Health’s core and biological data by Athena Owirodu, Lauren Gaydosh, and Brian Frizzelle, under the direction of Robert A. Hummer, at the Carolina Population Center (CPC) at the University of North Carolina at Chapel Hill
Regionalism in Library Professional Networks: An Analysis of Business Librarian Professional Organizations
Get PDFAlthough vital for meeting performance expectations and networking, national business librarian professional organization membership plummeted while regional counterparts grew in number and membership. This study aims to explain the motivations and practices of regional groups. Researchers recruited 19 interviewees representing 11 regional organizations. Interviews included eight questions with unscripted follow-up questions. Researchers coded Microsoft Teams transcripts in NVivo using an applied thematic analysis framework. While group composition varied, founders insisted that regionalism played a key role in the success of their groups. Groups shared common traits: such as free membership, crowdsource programming, and meeting structures
Fluctuations in mHealth engagement following receipt of goal-discrepant feedback messages
Get PDFObjective Digital behavior change interventions can successfully promote change in behavioral outcomes, but often suffer from steep decreases in engagement over time, which hampers their effectiveness. Providing feedback on goal performance is an established technique to promote goal attainment; however, theory indicates that sending goal-discrepant feedback messages could cause some users to respond more negatively than others. This analysis assessed whether goal-discrepant messaging was negatively associated with participant engagement, and if this relationship was exacerbated by baseline depressive symptoms within the context of a three-month weight loss pilot mHealth intervention. Methods This analysis applied a generalization of log-linear regression analysis with n = 52 participants (78.8% female, 61.5% white, ages 21–35) to assess the likelihood of reading consecutive program messages following receipt of messages with goal-discrepant content. Results Receipt of goal-discrepant messages was associated with a significantly lower likelihood (RR = 0.89) of participants reading the next program message sent, compared to receiving positive/neutral messages or no message, but these relationships were not influenced by depressive symptoms in this sample. Conclusion Feedback on goal performance remains an important behavior change technique; however, sending push messages that alert participants to their goal-discrepant status seems to reduce the likelihood that participants will read future program messages. Sending messages containing positive or neutral content does not seem to carry this negative risk among individuals in goal-discrepant states
Hearing Pronouns Primes Speakers to Use Pronouns
Get PDFSpeaking requires frequent decisions about how to refer, for example whether to use a pronoun (she) or a name (Ana). It is well known that this choice is guided by the discourse context, but little is known about the representations that are activated. We use priming to test whether this choice can be facilitated through recent exposure, and if so, what representations are activated. In a storytelling task, participants take turns with experimenters telling a story that is illustrated in 2-panel cartoons. The first sentence is given, and participants describe the second panel in their own words. We manipulate whether the experimenter used a pronoun or name in the prior story. Experiment 1 provides the first evidence in the literature that reference form choice can be primed, and that it is not dependent on the syntactic position of the antecedent. However, the effect is not finely tuned to the preceding prime. Instead, exposure at the start of the experiment persists throughout, even when the prime changes. Experiments 2 and 3 further show that exposure to pronoun primes result in greater pronoun use than at baseline, but that there is no sensitivity to the prime on the most recent trial. Results argue against a role for production facilitation in pronoun use, which suggests that reference production is not impacted by production efficiency