Effect of end-of-life care education on perceived self-efficacy of the pediatric respiratory therapist.

Background: End-of-life care (EoLC) is difficult for respiratory therapists (RTs), causing struggles with providing EoLC and grief during and after the death. Objective: The objective of the study was to determine if EoLC education can increase RTs' perception of knowledge of EoLC, respiratory therapy as a valuable EoLC service, comfort providing EoLC, and knowledge of ways to deal with grief. Methods: One hundred and thirty pediatric RTs completed a 1 h EoLC education session. Afterwards, a single-centre descriptive survey was administered to the 60 volunteers out of the 130 attendees. To determine RTs' self-rated change in knowledge of EoLC, perception of respiratory therapy as a valuable EoLC service, comfort with EoLC, and knowledge of ways to cope with grief. Statistical analysis included percent change. Results: Overall, 96% of surveyed RTs agree they had an increase in knowledge, perception of RT services, comfort with providing care, and coping. Only 4% felt that this course had little benefit overall but still perceived value in RT EoLC and increased knowledge of long- and short-term ways to deal with grief. Conclusion: Education on EoLC practices increased pediatric RTs' perception of knowledge, perceived value of respiratory therapy in EoLC, comfort with EoLC, and knowledge of coping resources.

Empowering Pediatric Palliative Homecare Patients and Caregivers with Symptom Management Plans.

Pediatric palliative home-based care has been shown to improve symptoms, quality of life, and coordination of care. Despite these successes, hospital utilization in our own palliative home-based care population remained high as some caregivers lacked confidence to manage symptoms at home and had difficulty in recalling or accessing "sick care plans." Our team developed the Symptom Management Plan (SMP), a multi-system "sick care plan," as a quality improvement project with the aim of improving caregiver confidence to manage symptoms at home. An Electronic Health Record-based SMP template was created for common symptoms: respiratory distress, seizures, feeding intolerance, and constipation with core subspecialists' input. Individualized SMPs were created and reviewed with caregivers at every subsequent palliative home nursing visit. Caregivers were surveyed on their confidence 3 and 6-months post-implementation. Resource utilization was analyzed throughout implementation. At 6 months, 73% of caregivers reported "better" or "much better" confidence in managing their child's symptoms after using the SMP, and 76% of caregivers perceived the SMP prevented urgent care or emergency department (ED) visits. After the SMP was launched, the rate of ED visits decreased from 0.86 to 0.47 per 100 patient-days, and admissions decreased from 0.56 to 0.39 per 100 patient-days. These rates further decreased to 0.31 ED visits and 0.19 admissions per 100 patient-days within 4 and 6 months. Introducing the SMP for our home-based palliative care patients was associated with improved caregiver confidence in managing acute symptoms at home and a reduction in hospital utilization.

Retrospective Pediatric Telepalliative Care Experience.

Background: Rady Children's Hospital (RCH) offers an outpatient pediatric palliative clinic that began offering telepalliative care in 2016. Objectives: This study describes demographics of parents receiving pediatric telepalliative care, patient/family satisfaction with telepalliative care, and patient/family perspectives. Design: Retrospective electronic medical record chart review (2016-2020) of telepalliative patients at RCH (San Diego, USA), including satisfaction surveys. Documented quotes from telepalliative care consultations were analyzed thematically. Results: Fifty-six patients were seen through 181 telepalliative visits. Demographics: Forty-three percent were female and 32% were Hispanic/Latino. Ages ranged from 3 months to 25 years. Average Palliative Performance Scale was 47%. Seventy-nine percent used gastrostomy tubes for nutrition, but only 29% used home ventilation. Eighty-two percent completed a Physician Order for Life-Sustaining Treatment. Goals for 84% of patients were for life prolongation and attempt resuscitation. Visits averaged 86 minutes. Twenty-five surveys were returned: 92% felt very satisfied and 96% said the video visit was the same, better, or much better than an in-person visit. Sixty-four percent said the video visit was more convenient and 68% felt the video visit was safer. Identified themes from telepalliative consultations included advocacy for their child, challenges surrounding care for children with complex medical needs, medical team communication, caregiver support, facing uncertainty, and decision making. Conclusions and Implications: Pediatric patients receiving telepalliative care varied in demographics, functional status, and goals of care. Telepalliative care can provide good quality of care and patient satisfaction. In a telepalliative setting, parents were able to communicate challenging aspects of care including navigating uncertainty, finding support, and decision making.

Cost Efficacy of Rapid Whole Genome Sequencing in the Pediatric Intensive Care Unit.

The diagnostic and clinical utility of rapid whole genome sequencing (rWGS) for critically ill children in the intensive care unit (ICU) has been substantiated by multiple studies, but comprehensive cost-effectiveness evaluation of rWGS in the ICU outside of the neonatal age group is lacking. In this study, we examined cost data retrospectively for a cohort of 38 children in a regional pediatric ICU (PICU) who received rWGS. We identified seven of 17 patients who received molecular diagnoses by rWGS and had resultant changes in clinical management with sufficient clarity to permit cost and quality adjusted life years (QALY) modeling. Cost of PICU care was estimated to be reduced by $184,846 and a total of 12.1 QALYs were gained among these seven patients. The total cost of rWGS for patients and families for the entire cohort (38 probands) was $239,400. Thus, the net cost of rWGS was $54,554, representing $4,509 per QALY gained. This quantitative, retrospective examination of healthcare utilization associated with rWGS-informed medicine interventions in the PICU revealed approximately one-third of a QALY gained per patient tested at a cost per QALY that was approximately one-tenth of that typically sought for cost-effective new medical interventions. This evidence suggests that performance of rWGS as a first-tier test in selected PICU children with diseases of unknown etiology is associated with acceptable cost-per-QALY gained.

Rapid Whole Genome Sequencing Has Clinical Utility in Children in the PICU.

OBJECTIVES: Genetic disorders are a leading contributor to mortality in the neonatal ICU and PICU in the United States. Although individually rare, there are over 6,200 single-gene diseases, which may preclude a genetic diagnosis prior to ICU admission. Rapid whole genome sequencing is an emerging method of diagnosing genetic conditions in time to affect ICU management of neonates; however, its clinical utility has yet to be adequately demonstrated in critically ill children. This study evaluates next-generation sequencing in pediatric critical care. DESIGN: Retrospective cohort study. SETTING: Single-center PICU in a tertiary children's hospital. PATIENTS: Children 4 months to 18 years admitted to the PICU who were nominated between July 2016 and May 2018. INTERVENTIONS: Rapid whole genome sequencing with targeted phenotype-driven analysis was performed on patients and their parents, when parental samples were available. MEASUREMENTS AND MAIN RESULTS: A molecular diagnosis was made by rapid whole genome sequencing in 17 of 38 children (45%). In four of the 17 patients (24%), the genetic diagnoses led to a change in management while in the PICU, including genome-informed changes in pharmacotherapy and transition to palliative care. Nine of the 17 diagnosed children (53%) had no dysmorphic features or developmental delay. Eighty-two percent of diagnoses affected the clinical management of the patient and/or family after PICU discharge, including avoidance of biopsy, administration of factor replacement, and surveillance for disorder-related sequelae. CONCLUSIONS: This study demonstrates a retrospective evaluation for undiagnosed genetic disease in the PICU and clinical utility of rapid whole genome sequencing in a portion of critically ill children. Further studies are needed to identify PICU patients who will benefit from rapid whole genome sequencing early in PICU admission when the underlying etiology is unclear.

Confidence with and Barriers to Serious Illness Communication: A National Survey of Hospitalists.

OBJECTIVE: To describe the concerns, confidence, and barriers of practicing hospitalists around serious illness communication. BACKGROUND: Hospitalist physicians are optimally positioned to provide primary palliative care, yet their experiences in serious illness communication are not well described. METHODS: Web-based survey, conducted in May 2016. The survey link was distributed via email to 4000 members of the Society of Hospital Medicine. The 39-item survey assessed frequency of concerns about serious illness communication, confidence for common tasks, and barriers using Likert-type scales. It was developed by the authors based on prior work, a focus group, and feedback from pilot respondents. RESULTS: We received 332 completed surveys. On most or every shift, many participants reported having concerns about a patient's or family's understanding of prognosis (53%) or the patient's code status (63%). Most participants were either confident or very confident in discussing goals of care (93%) and prognosis (87%). Fewer were confident or very confident in responding to patients or families who had not accepted the seriousness of an illness (59%) or in managing conflict (50%). Other frequently cited barriers were lack of time, lack of prior discussions in the outpatient setting, unrealistic prognostic expectations from other physicians, limited institutional support, and difficulty finding records of previous discussions. DISCUSSION: Our results suggest opportunities to improve hospitalists' ability to lead serious illness communication by increasing the time hospitalists have for discussions, improving documentation systems and communication between inpatient and outpatient clinicians, and targeted training on challenging communication scenarios.

Interactive Palliative and End-of-Life Care Modules for Pediatric Residents.

Background. There is a need for increased palliative care training during pediatric residency. Objective. In this pilot study, we created a comprehensive experiential model to teach palliative care skills to pediatric residents. Our Comfort Care Modules (CCMs) address pediatric palliative care (PPC) topics of breaking bad news, dyspnea, anxiety, pain management, and the dying child. We also evaluated a scoring system and gathered qualitative data. Methods. The CCMs are part of the University of California San Diego pediatric residency's second-year curriculum. Comparisons were made for statistical trends between residents exposed to the modules (n = 15) and those not exposed (n = 4). Results. Nineteen of 36 residents (52%) completed surveys to self-rate their preparedness, knowledge, and confidence about PPC before and after the intervention. Resident scores increased in all areas. All improvements reached statistical significance except confidence when breaking bad news. Overall, the resident feedback about the CCMs was positive. Conclusions. This study demonstrates that the CCMs can be performed effectively in an academic setting and can benefit residents' self-perception of preparedness, confidence, and knowledge about pediatric palliative care. In the future, we plan to implement the modules on a larger scale. We encourage their use in interprofessional settings and across institutions.

Apparent life-threatening event admissions and gastroesophageal reflux disease: the value of hospitalization.

BACKGROUND: No standard management plan for infants with an apparent life-threatening event (ALTE) currently exists. These infants are routinely hospitalized. Benefits of hospitalization of ALTE patients with gastroesophageal reflux disease (GERD) need definition. OBJECTIVES: The study's objectives were to determine the accuracy of a working diagnosis of GERD in infants admitted with ALTE and to describe the history and hospital course of infants with both working and discharge diagnoses of GERD. METHODS: Authors retrospectively reviewed records from a large children's hospital of infants aged 1 year old and younger hospitalized from January 1, 2004, to March 1, 2007, with an admission diagnosis of ALTE. Demographics, clinical presentation, testing, hospital course, and 6-month postdischarge visits were abstracted. Intensive care admissions were excluded. Univariate and multivariate analyses identified factors associated with a discharge diagnosis of GERD. RESULTS: Three hundred thirteen infants met inclusion. Mean age was 2.1 months; mean length of stay was 2.5 days. A discharge diagnosis of GERD was most common (n = 154, 49%); 138 (89%) were initially well appearing, 10 (6%) had in-hospital events, and only 20 (13%) had upper gastrointestinal series performed. Concordance of initial working to discharge diagnosis of GERD was 96%. Nonconcordant diagnoses evolved within 24 hours. Rescue breaths and calling 911 were independently associated with a discharge diagnosis of GERD. Within 6 months, 14 patients (9%) with a discharge diagnosis of GERD had recurrent ALTE, and 5 (3%) had significant new diagnoses. CONCLUSIONS: Concordance of initial working diagnosis with discharge diagnosis of GERD in ALTE patients is high. However, in hospital events, evolution to new diagnoses and recurrent ALTE suggest that hospitalization of these patients is beneficial. Diagnostic studies should not be routine but should target concerns from the history, examination, and hospital course.

Planar chiral organoborane Lewis acids derived from naphthylferrocene.

Enantiomerically pure metalated 2-(1-naphthyl)ferrocene (NpFc) derivatives NpFcM (M=SnMe(3), HgCl) were prepared and characterized by multinuclear NMR and UV/Vis spectroscopy, cyclic voltammetry, and elemental analysis. Optical rotation measurements were performed and the absolute configuration of the new planar chiral ferrocene species was confirmed by single-crystal X-ray diffraction analysis. The mercuriated species NpFcHgCl proved suitable as a reagent for the preparation of the chiral organoborane Lewis acid NpFcBCl(2), which can in turn be converted to other ferrocenylboranes by replacement of Cl with nucleophiles. The highly Lewis acidic perfluoroarylborane derivatives NpFcB(C(6)F(5))Cl and NpFcB(C(6)F(5))(2) were successfully prepared by treatment with CuC(6)F(5). The structures were studied by single-crystal X-ray diffraction and variable-temperature (19)F NMR spectroscopy, which suggested that pi stacking of a C(6)F(5) group on boron with the adjacent naphthyl group is energetically favorable. UV/Vis absorption spectroscopy and cyclic voltammetry measurements were performed to examine the electronic properties of these novel redox-active chiral Lewis acids.

Binary stacks of [CuC6F5]4 with arenes.

Formation of the first binary stacks of an intact organocopper aggregate with the arenes naphthalene and 2,2'-bithiophene is reported; crystallographic data suggest that the supramolecular assembly process is supported by Cu-pi, Cu-S, and perfluoroarene-arene pi-interactions.

Examination of the mixed-valence state of the doubly boron-bridged diferrocene cation [(FeCp)2{mu-C10H6(BPh)2}]+.

A series of mixed-valent (MV) complexes [(FeCp)2(mu-C10H6(BPh)2)]+X ([1+]X; X=I 5, PF6, SbF6, B(C6F5)4) were prepared by oxidation of diboradiferrocene [(FeCp)2(mu-C10H6(BPh)2)] (1) with I 2, AgPF6, and AgSbF6, respectively, and through anion exchange of the I 5(-) salt with [Li(Et2O)x][B(C6F5)4] in the case of X=B(C6F5)4. The MV state of the cation was investigated in solution by multinuclear NMR spectroscopy, CV, and UV/Vis-NIR absorption spectroscopy, and in the solid state by IR spectroscopy, single-crystal X-ray crystallography, and Mössbauer spectroscopy. The cyclic voltammogram of 1 shows two distinct redox waves with a large redox splitting of Delta E=510 mV in CH2Cl2 and the NIR spectrum for the mono-oxidized species displays an intervalence charge-transfer band at around 1500 to 1700 nm depending on the specific counterion present. The X-ray crystal structures of [1+]X show inversion-symmetric cations with X=I 5 and B(C6F5)4 and unsymmetric valence-trapped structures composed of one ferrocene and one ferrocenium moiety with X=PF6 and SbF6. Mössbauer data for X=PF6 are consistent with valence trapping at all temperatures between 90 and 343 K. In comparison, fast electron transfer is evident on the Mössbauer timescale for X=I 5 and temperature-dependent behavior is observed for X=B(C6F5)4. The anion dependence of the X-ray structural and Mössbauer data is discussed in the context of crystal symmetry and the possibility of static and dynamic disorder effects is considered.

Simultaneous fluoride binding to ferrocene-based heteronuclear bidentate Lewis acids.

A series of micro2-fluoro-bridged heteronuclear bidentate Lewis acid complexes [K(18-crown-6)THF]+ [Fc(BMeF)(SnMe2Cl)F]- (1-2F), [K(18-crown-6)THF]+ [Fc(BMeF)(SnMe2F)F]- (1-3F), [K(18-crown-6)THF]+ [Fc(BMePh)(SnMe2Cl)F]- (2-F), and [K(18-crown-6)THF]+ [Fc(BMePh)(SnMe2F)F]- (2-2F) (Fc=1,2-ferrocenediyl) was prepared. Compounds 2-F and 2-2F were obtained as a mixture of diastereomers, which arise due to the generation of a stereocenter at boron in addition to their inherent planar chirality. All compounds have been studied in the solid state by single-crystal X-ray diffraction analysis and by multinuclear NMR spectroscopy in solution. As a result of bridging-fluoride interactions, tetrahedral boron and distorted trigonal-bipyramidal tin centers are observed. Comparison with the corresponding monofunctional ferrocenylborates further supports the bridging nature of the fluoride anion. Two-dimensional exchange spectroscopy 19F NMR studies provide evidence for facile intermolecular and intramolecular fluorine exchange processes. All complexes display reversible one-electron oxidation events at lower potentials than those of the tricoordinate ferrocenylborane precursors, which is typical of ferrocenylborate complexes.