Adapting and responding to a pandemic: Patient and family advisory councils in children\u27s hospitals during COVID-19

This mixed-methods study investigated the effects of the COVID-19 pandemic on Patient and Family Advisory Councils (PFACs) within children’s hospitals in the United States. Specifically, the study sought to understand how PFACs adapted operations as a result of the COVID-19 pandemic, how patient and family advisors (PFAs) were engaged in the response to COVID-19, and the intersection of the COVID-19 pandemic with PFAC diversity, equity, and inclusion. The study consisted of a survey distributed to 228 children’s hospitals, with a 73% response rate, and in-depth interviews with selected survey respondents (n=12). While COVID-19 temporarily disrupted PFAC operations and forced rapid adaptations, most children’s hospital PFACs transitioned successfully to virtual meetings, with 86% reporting that their PFAC met at least once from March to December 2020 and 84% indicating that their PFAC planned to meet as frequently or more frequently than before the pandemic. The majority of respondents (72%) reported that attendance at virtual PFAC meetings was the same as or better than with in-person meetings. Interview participants reported benefits associated with virtual meetings, including the potential ability to recruit and engage PFAs who better reflected the diversity of the patients and families served by the hospitals. Children’s hospitals are well-positioned to be leaders in the field, contributing to the development of new approaches, lessons learned, and best practices moving forward. This is especially true as hospitals continue to navigate the evolving realities of the COVID-19 pandemic, and as PFACs address challenges associated with maintaining diverse, equitable, and inclusive councils. Experience Framework This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens

The intersection of diversity, equity, and inclusion with pediatric Patient and Family Advisory Councils

Patient and family advisory councils (PFACs) advance patient- and family-centered care within children’s hospitals but may not reflect the diversity of the communities they serve. We sought to assess PFAC diversity among children’s hospitals and explore barriers, drivers, and enablers of recruitment, retention, and engagement of patient and family advisors (PFAs) with diverse perspectives and backgrounds. We performed a mixed methods study to evaluate structure, composition, recruitment, and engagement strategies of children’s hospital PFACs. Individuals likely to have knowledge of or responsibility for PFACs at each Children’s Hospital Association (CHA) member hospital were asked to complete an electronic questionnaire. A subset of respondents from hospitals varying in size and region participated in 1-hour virtual interviews. We received valid responses from 166 (73%) of 228 CHA member hospitals. Eighty-eight percent reported having at least one PFAC. Only 21% selected “definitely true” when asked if their PFACs reflected the racial and ethnic diversity of the community served. Twelve respondents from various children’s hospitals participated in qualitative interviews. Five themes emerged: 1) Importance of Diversity in PFAC Membership; 2) Targeted, Personalized Recruitment and Engagement Strategies Facilitate Diverse PFACs; 3) Importance of Supporting PFAs from Diverse Backgrounds; 4) Ample Opportunities to Engage PFAs in Institutional Diversity, Equity, and Inclusion Efforts; and 5) External Factors as Drivers for Change within PFACs. Many PFACs are working to increase diversity, equity, and inclusion, but opportunities to close gaps remain. Findings may inform strategies to promote diversity, equity, and inclusion within PFACs across hospital systems. Experience Framework This article is associated with the Patient, Family & Community Engagement lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens

CLUE: a randomized comparative effectiveness trial of IV nicardipine versus labetalol use in the emergency department

Abstract Introduction Our purpose was to compare the safety and efficacy of food and drug administration (FDA) recommended dosing of IV nicardipine versus IV labetalol for the management of acute hypertension. Methods Multicenter randomized clinical trial. Eligible patients had 2 systolic blood pressure (SBP) measures ≥180 mmHg and no contraindications to nicardipine or labetalol. Before randomization, the physician specified a target SBP ± 20 mmHg (the target range: TR). The primary endpoint was the percent of subjects meeting TR during the initial 30 minutes of treatment. Results Of 226 randomized patients, 110 received nicardipine and 116 labetalol. End organ damage preceded treatment in 143 (63.3%); 71 nicardipine and 72 labetalol patients. Median initial SBP was 212.5 (IQR 197, 230) and 212 mmHg (IQR 200,225) for nicardipine and labetalol patients (P = 0.68), respectively. Within 30 minutes, nicardipine patients more often reached TR than labetalol (91.7 vs. 82.5%, P = 0.039). Of 6 BP measures (taken every 5 minutes) during the study period, nicardipine patients had higher rates of five and six instances within TR than labetalol (47.3% vs. 32.8%, P = 0.026). Rescue medication need did not differ between nicardipine and labetalol (15.5 vs. 22.4%, P = 0.183). Labetalol patients had slower heart rates at all time points (P \u3c 0.01). Multivariable modeling showed nicardipine patients were more likely in TR than labetalol patients at 30 minutes (OR 2.73, P = 0.028; C stat for model = 0.72) Conclusions Patients treated with nicardipine are more likely to reach the physician-specified SBP target range within 30 minutes than those treated with labetalol. Trial registration ClinicalTrials.gov: NCT0076564

Genome Sequence Conservation of Hendra Virus Isolates during Spillover to Horses, Australia

Bat-to-horse transmission of Hendra virus has occurred at least 14 times. Although clinical signs in horses have differed, genome sequencing has demonstrated little variation among the isolates. Our sequencing of 5 isolates from recent Hendra virus outbreaks in horses found no correlation between sequences and time or geographic location of outbreaks

Does culture shape face perception in autism? Cross-cultural evidence of the own-race advantage from the UK and Japan

Autism spectrum disorders (ASD) are associated with face perception atypicalities, and atypical experience with faces has been proposed as an underlying explanation. Studying the own‐race advantage (ORA) for face recognition can reveal the effect of experience on face perception in ASD, although the small number of studies in the area present mixed findings. The current study probed the ORA in ASD by comparing two cultural groups simultaneously for the first time. Children with ASD in the UK (N=16) and Japan (N=26) were compared to age and ability matched TD children in the UK (N=16) and Japan (N=26). Participants completed a two‐alternative forced‐choice task, whereby they had to recognise a just‐seen face from a foil which was manipulated in one of four ways (IC: identity change; EE: easy eyes; HE: hard eyes; HM: hard mouth). Face stimuli were Asian and Caucasian, and thus the same stimuli were own and other‐race depending on the cultural group. The ASD groups in the UK and Japan did not show impaired face recognition abilities, or impairments with recognising faces depending on manipulations to the eye region, and importantly they showed an ORA. There was considerable heterogeneity in the presence of the ORA in ASD and TD and also across cultures. Children in Japan had higher accuracy than children in the UK, and TD children in Japan did not show an ORA. The present cross‐cultural study challenges the view that atypical experiences with faces lead to a reduced/absent ORA in ASD

Investigating the role of the Est3 protein in yeast telomere replication

The Est3 subunit of yeast telomerase, which adopts a predicted OB-fold, is essential for telomere replication. To assess the possible contributions that Est3 might make to enzyme catalysis, we compared telomerase activity from wild type and est3-Δ strains of Saccharomyces castellii, which revealed that loss of the Est3 subunit results in a 2- to 3-fold decline in nucleotide addition. This effect was not primer-specific, based on assessment of a panel of primers that spanned the template of the S. castellii telomerase RNA. Furthermore, using nuclear magnetic resonance chemical shift perturbation, no chemical shift change was observed at any site in the protein upon addition of single-stranded DNA, arguing against a role for Est3 in recognition of telomeric substrates by telomerase. Addition of exogenous Est3 protein, including mutant Est3 proteins that are severely impaired for telomere replication in vivo, fully restored activity in est3-Δ telomerase reactions. Thus, Est3 performs an in vivo regulatory function in telomere replication, which is distinct from any potential contribution that Est3 might make to telomerase activity