Caring for Each Other: A Resident-Led Peer Debriefing Skills Workshop.

Background: Inadequate time and space to process critical incidents contribute to burnout. Residents do not regularly participate in emotional debriefs. An institutional needs assessment revealed only 11% of surveyed pediatrics and combined medicine-pediatrics residents had participated in a debrief. Objective: The primary objective was to increase resident comfort in participation in peer debriefs after critical incidents from 30% to 50% with implementation of a resident-led peer debriefing skills workshop. Secondary objectives included increasing resident likelihood of leading debriefs and comfort in identifying symptoms of emotional distress. Methods: Internal medicine, pediatrics, and medicine-pediatrics residents were surveyed for baseline participation in debriefs and comfort in leading peer debriefs. Two senior residents became trained debrief facilitators and led a 50-minute peer debriefing skills workshop for co-residents. Pre- and post-workshop surveys assessed participant comfort in and likelihood of leading peer debriefs. Surveys distributed 6 months post-workshop assessed resident debrief participation. We implemented the Model for Improvement from 2019 to 2022. Results: Forty-six (77%) and 44 (73%) of the 60 participants completed the pre- and post-workshop surveys. Post-workshop, residents' reported comfort in leading debriefs increased from 30% to 91%. The likelihood of leading a debrief increased from 51% to 91%. Ninety-five percent (42 of 44) agreed that formal training in debriefing is beneficial. Almost 50% (24 of 52) of surveyed residents preferred to debrief with a peer. Six months post-workshop, 22% (15 of 68) of surveyed residents had led a peer debrief. Conclusions: Many residents prefer to debrief with a peer after critical incidents that cause emotional distress. Resident-led workshops can improve resident comfort in peer debriefing.

Goal-Concordance in Children with Complex Chronic Conditions.

OBJECTIVES: To characterize delivery of goal-concordant end-of-life (EOL) care among children with complex chronic conditions and to determine factors associated with goal-concordance. STUDY DESIGN: This was a retrospective review of goals of care discussions for 272 children with at least 1 complex chronic condition who died at a tertiary care hospital between January 1, 2014, and December 31, 2017. Goals of care and code status were assessed before and within the last 72 hours of life. Goals of care discussions were coded as full interventions; considering withdrawal of interventions (palliation); planned transition to palliation; or actively transitioning/transitioned to palliation. RESULTS: In total, 158 children had documented goals of care discussions before and within the last 72 hours of life, 18 had goals of care discussions only >72 hours before death, 54 only in the last 72 hours of life, and 42 had no documented goals of care. For children with goals of care, EOL care was goal-concordant for 82.2%, discordant in 7%, and unclear in 10.8%. Black children had a greater than 8-fold greater odds of discordant care compared with White children (OR 8.34, P = .007). Comparison of goals of care and code status before and within the last 72 hours of life revealed trends toward nonescalation of care. Specifically, rates of active palliation increased from 11.7% to 63.0%, and code status shifted from 32.6% do not resuscitate to 65.2% (P < .001). CONCLUSIONS: In this cohort, a majority of children had documented goals of care discussions and received goal-concordant EOL care. However, Black children had greater odds of receiving goal-discordant care. Goals of care and code status shifted toward palliation during the last 72 hours of life.

Evaluation of a Quality Improvement Intervention to Improve Pediatric Palliative Care Consultation Processes.

BACKGROUND: A critical aspect of pediatric palliative care consultations is the assessment and documentation of patient and family needs. While these assessments usually include a focus on physical pain, there is less standardization of assessments of other physical symptoms and psychosocial, emotional, or spiritual needs. AIMS: To improve the breadth of assessment of psychosocial and emotional needs, screen for symptoms other than pain among pediatric patients utilizing palliative care services, and to increase documentation of assessment data from 30%-40% to 80% through practice changes implemented in 2 Plan-Do-Study-Act (PDSA) cycles. METHODS: This quality improvement project involved implementing provider education and adapting the palliative care consultation template in the electronic health record to improve breadth and consistency of assessment and documentation during consultations by the interdisciplinary pediatric palliative care team. Two PDSA cycles were performed. Chi squared tests and statistical control charts were used for data analysis. RESULTS: There was statistically significant improvement in the inclusion of documentation of a pediatric palliative care social work note from baseline (32%) to Cycle 2 (57%). Physical symptom screening declined slightly, but not significantly (p = .32) and socio-emotional discussions also declined but not significantly (p = .05). CONCLUSIONS: Screening for physical symptoms and discussions with patients and families about psychosocial/emotional needs during the initial palliative care consultations are extremely important in providing effective, holistic, patient-centered care. There is a need for development of pediatric-centric guidelines and quality measures to evaluate pediatric palliative care programs; further research is indicated to determine methods for evaluating compliance with these guidelines.

Simulation and minimization: technical advances for factorial experiments designed to optimize clinical interventions.

BACKGROUND: The Multiphase Optimization Strategy (MOST) is designed to maximize the impact of clinical healthcare interventions, which are typically multicomponent and increasingly complex. MOST often relies on factorial experiments to identify which components of an intervention are most effective, efficient, and scalable. When assigning participants to conditions in factorial experiments, researchers must be careful to select the assignment procedure that will result in balanced sample sizes and equivalence of covariates across conditions while maintaining unpredictability. METHODS: In the context of a MOST optimization trial with a 2x2x2x2 factorial design, we used computer simulation to empirically test five subject allocation procedures: simple randomization, stratified randomization with permuted blocks, maximum tolerated imbalance (MTI), minimal sufficient balance (MSB), and minimization. We compared these methods across the 16 study cells with respect to sample size balance, equivalence on key covariates, and unpredictability. Leveraging an existing dataset to compare these procedures, we conducted 250 computerized simulations using bootstrap samples of 304 participants. RESULTS: Simple randomization, the most unpredictable procedure, generated poor sample balance and equivalence of covariates across the 16 study cells. Stratified randomization with permuted blocks performed well on stratified variables but resulted in poor equivalence on other covariates and poor balance. MTI, MSB, and minimization had higher complexity and cost. MTI resulted in balance close to pre-specified thresholds and a higher degree of unpredictability, but poor equivalence of covariates. MSB had 19.7% deterministic allocations, poor sample balance and improved equivalence on only a few covariates. Minimization was most successful in achieving balanced sample sizes and equivalence across a large number of covariates, but resulted in 34% deterministic allocations. Small differences in proportion of correct guesses were found across the procedures. CONCLUSIONS: Based on the computer simulation results and priorities within the study context, minimization with a random element was selected for the planned research study. Minimization with a random element, as well as computer simulation to make an informed randomization procedure choice, are utilized infrequently in randomized experiments but represent important technical advances that researchers implementing multi-arm and factorial studies should consider.

Using the Multiphase Optimization Strategy (MOST) framework to test intervention delivery strategies: a study protocol.

BACKGROUND: Delivery of behavioral interventions is complex, as the majority of interventions consist of multiple components used either simultaneously, sequentially, or both. The importance of clearly delineating delivery strategies within these complex interventions-and furthermore understanding the impact of each strategy on effectiveness-has recently emerged as an important facet of intervention research. Yet, few methodologies exist to prospectively test the effectiveness of delivery strategies and how they impact implementation. In the current paper, we describe a study protocol for a large randomized controlled trial in which we will use the Multiphase Optimization Strategy (MOST), a novel framework developed to optimize interventions, i.e., to test the effectiveness of intervention delivery strategies using a factorial design. We apply this framework to delivery of Family Navigation (FN), an evidence-based care management strategy designed to reduce disparities and improve access to behavioral health services, and test four components related to its implementation. METHODS/DESIGN: The MOST framework contains three distinct phases: Preparation, Optimization, and Evaluation. The Preparation phase for this study occurred previously. The current study consists of the Optimization and Evaluation phases. Children aged 3-to-12 years old who are detected as "at-risk" for behavioral health disorders (n = 304) at a large, urban federally qualified community health center will be referred to a Family Partner-a bicultural, bilingual member of the community with training in behavioral health and systems navigation-who will perform FN. Families will then be randomized to one of 16 possible combinations of FN delivery strategies (2 × 2 × 2× 2 factorial design). The primary outcome measure will be achieving a family-centered goal related to behavioral health services within 90 days of randomization. Implementation data on the fidelity, acceptability, feasibility, and cost of each strategy will also be collected. Results from the primary and secondary outcomes will be reviewed by our team of stakeholders to optimize FN delivery for implementation and dissemination based on effectiveness, efficiency, and cost. DISCUSSION: In this protocol paper, we describe how the MOST framework can be used to improve intervention delivery. These methods will be useful for future studies testing intervention delivery strategies and their impact on implementation. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03569449. Registered on 26 June 2018.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Children.

Given the limited number of pediatric-specific palliative care programs, palliative care providers of all disciplines may be called on to care for infants, children, and adolescents with serious illness. This article provides a review of the unique components of pediatric palliative care, including key roles within an interdisciplinary team, pediatric developmental considerations, use of medical technology and complexities of symptom management in children with serious illness, hospice utilization, as well as pointers for discussions with families regarding a patient's quality of life and goals of care.

Macromolecular composition of phloem exudate from white lupin (Lupinus albus L.).

BACKGROUND: Members of the legume genus Lupinus exude phloem 'spontaneously' from incisions made to the vasculature. This feature was exploited to document macromolecules present in exudate of white lupin (Lupinus albus [L.] cv Kiev mutant), in particular to identify proteins and RNA molecules, including microRNA (miRNA). RESULTS: Proteomic analysis tentatively identified 86 proteins from 130 spots collected from 2D gels analysed by partial amino acid sequence determination using MS/MS. Analysis of a cDNA library constructed from exudate identified 609 unique transcripts. Both proteins and transcripts were classified into functional groups. The largest group of proteins comprised those involved in metabolism (24%), followed by protein modification/turnover (9%), redox regulation (8%), cell structural components (6%), stress and defence response (6%) with fewer in other groups. More prominent proteins were cyclophilin, ubiquitin, a glycine-rich RNA-binding protein, a group of proteins that comprise a glutathione/ascorbate-based mechanism to scavenge oxygen radicals, enzymes of glycolysis and other metabolism including methionine and ethylene synthesis. Potential signalling macromolecules such as transcripts encoding proteins mediating calcium level and the Flowering locus T (FT) protein were also identified. From around 330 small RNA clones (18-25 nt) 12 were identified as probable miRNAs by homology with those from other species. miRNA composition of exudate varied with site of collection (e.g. upward versus downward translocation streams) and nutrition (e.g. phosphorus level). CONCLUSIONS: This is the first inventory of macromolecule composition of phloem exudate from a species in the Fabaceae, providing a basis to identify systemic signalling macromolecules with potential roles in regulating development, growth and stress response of legumes.

Development and characterization of a mouse with profound biotinidase deficiency: a biotin-responsive neurocutaneous disorder.

Biotinidase deficiency is the primary enzymatic defect in biotin-responsive, late-onset multiple carboxylase deficiency. Untreated children with profound biotinidase deficiency usually exhibit neurological symptoms including lethargy, hypotonia, seizures, developmental delay, sensorineural hearing loss and optic atrophy; and cutaneous symptoms including skin rash, conjunctivitis and alopecia. Although the clinical features of the disorder markedly improve or are prevented with biotin supplementation, some symptoms, once they occur, such as developmental delay, hearing loss and optic atrophy, are usually irreversible. To prevent development of symptoms, the disorder is screened for in the newborn period in essentially all states and in many countries. In order to better understand many aspects of the pathophysiology of the disorder, we have developed a transgenic biotinidase-deficient mouse. The mouse has a null mutation that results in no detectable serum biotinidase activity or cross-reacting material to antibody prepared against biotinidase. When fed a biotin-deficient diet these mice develop neurological and cutaneous symptoms, carboxylase deficiency, mild hyperammonemia, and exhibit increased urinary excretion of 3-hydroxyisovaleric acid and biotin and biotin metabolites. The clinical features are reversed with biotin supplementation. This biotinidase-deficient animal can be used to study systematically many aspects of the disorder and the role of biotinidase, biotin and biocytin in normal and in enzyme-deficient states.

Analysis of mutations causing biotinidase deficiency.

Biotinidase deficiency is an inherited disorder in which the vitamin, biotin, is not recycled. Individuals with biotinidase deficiency can develop neurological and cutaneous symptoms if they are not treated with biotin. Biotinidase deficiency screening has been incorporated into essentially all newborn screening programs in the United States and in many countries. We now report 140 known mutations in the biotinidase gene (BTD) that cause biotinidase deficiency. All types of mutations have been found to cause biotinidase deficiency. Variants have been identified throughout the coding sequence. Essentially all the variants result in enzymatic activities with less than 10% of mean normal enzyme activity (profound biotinidase deficiency) with the exception of the c.1330G>C (p.D444H) mutation, which results in an enzyme having 50% of mean normal serum activity. The putative three-dimensional structure of biotinidase has been predicted by homology to that of nitrilases/amidases. The effect of the various missense mutations can be predicted to affect various important sites within the structure of the enzyme. This compilation of variants causing biotinidase deficiency will be useful to clinical laboratories that are performing mutation analysis for confirmational testing when the enzymatic results are equivocal for children identified through newborn screening.

Construction of a comparative genetic map in faba bean (Vicia faba L.); conservation of genome structure with Lens culinaris.

BACKGROUND: The development of genetic markers is complex and costly in species with little pre-existing genomic information. Faba bean possesses one of the largest and least studied genomes among cultivated crop plants and no gene-based genetic maps exist. Gene-based orthologous markers allow chromosomal regions and levels of synteny to be characterised between species, reveal phylogenetic relationships and chromosomal evolution, and enable targeted identification of markers for crop breeding. In this study orthologous codominant cross-species markers have been deployed to produce the first exclusively gene-based genetic linkage map of faba bean (Vicia faba), using an F6 population developed from a cross between the lines Vf6 (equina type) and Vf27 (paucijuga type). RESULTS: Of 796 intron-targeted amplified polymorphic (ITAP) markers screened, 151 markers could be used to construct a comparative genetic map. Linkage analysis revealed seven major and five small linkage groups (LGs), one pair and 12 unlinked markers. Each LG was comprised of three to 30 markers and varied in length from 23.6 cM to 324.8 cM. The map spanned a total length of 1685.8 cM. A simple and direct macrosyntenic relationship between faba bean and Medicago truncatula was evident, while faba bean and lentil shared a common rearrangement relative to M. truncatula. One hundred and four of the 127 mapped markers in the 12 LGs, which were previously assigned to M. truncatula genetic and physical maps, were found in regions syntenic between the faba bean and M. truncatula genomes. However chromosomal rearrangements were observed that could explain the difference in chromosome numbers between these three legume species. These rearrangements suggested high conservation of M. truncatula chromosomes 1, 5 and 8; moderate conservation of chromosomes 2, 3, 4 and 7 and no conservation with M. truncatula chromosome 6. Multiple PCR amplicons and comparative mapping were suggestive of small-scale duplication events in faba bean. This study also provides a preliminary indication for finer scale macrosynteny between M. truncatula, lentil and faba bean. Markers originally designed from genes on the same M. truncatula BACs were found to be grouped together in corresponding syntenic areas in lentil and faba bean. CONCLUSION: Despite the large size of the faba bean genome, comparative mapping did not reveal evidence for polyploidisation, segmental duplication, or significant rearrangements compared to M. truncatula, although a bias in the use of single locus markers may have limited the detection of duplications. Non-coding repetitive DNA or transposable element content provides a possible explanation for the difference in genome sizes. Similar patterns of rearrangements in faba bean and lentil compared to M. truncatula support phylogenetic studies dividing these species into the tribes Viceae and Trifoliae. However, substantial macrosynteny was apparent between faba bean and M. truncatula, with the exception of chromosome 6 where no orthologous markers were found, confirming previous investigations suggesting chromosome 6 is atypical. The composite map, anchored with orthologous markers mapped in M. truncatula, provides a central reference map for future use of genomic and genetic information in faba bean genetic analysis and breeding.