Extracorporeal membrane oxygenation and paediatric palliative care in an ICU.

OBJECTIVES: Compare rates, clinical characteristics, and outcomes of paediatric palliative care consultation in children supported on extracorporeal membrane oxygenation admitted to a single-centre 16-bed cardiac or a 28-bed paediatric ICU. METHODS: Retrospective review of clinical characteristics and outcomes of children (aged 0-21 years) supported on extracorporeal membrane oxygenation between January, 2017 and December, 2019 compared by palliative care consultation. MEASUREMENTS AND RESULTS: One hundred children (N = 100) were supported with extracorporeal membrane oxygenation; 19% received a palliative care consult. Compared to non-consulted children, consulted children had higher disease severity measured by higher complex chronic conditions at the end of extracorporeal membrane oxygenation hospitalisation (5 versus. 3; p < 0.001), longer hospital length of stay (92 days versus 19 days; p < 0.001), and higher use of life-sustaining therapies after decannulation (79% versus 23%; p < 0.001). Consultations occurred mainly for longitudinal psychosocial-spiritual support after patient survived device deployment with a median of 27 days after cannulation. Most children died in the ICU after withdrawal of life-sustaining therapies regardless of consultation status. Over two-thirds of the 44 deaths (84%; n = 37) occurred during extracorporeal membrane oxygenation hospitalisation. CONCLUSIONS: Palliative care consultation was rare showing that palliative care consultation was not viewed as an acute need and only considered when the clinical course became protracted. As a result, there are missed opportunities to involve palliative care earlier and more frequently in the care of extracorporeal membrane survivors and non-survivors and their families.

A Core Outcome Measurement Set for Pediatric Critical Care.

OBJECTIVES: To identify a PICU Core Outcome Measurement Set (PICU COMS), a set of measures that can be used to evaluate the PICU Core Outcome Set (PICU COS) domains in PICU patients and their families. DESIGN: A modified Delphi consensus process. SETTING: Four webinars attended by PICU physicians and nurses, pediatric surgeons, rehabilitation physicians, and scientists with expertise in PICU clinical care or research ( n = 35). Attendees were from eight countries and convened from the Pediatric Acute Lung Injury and Sepsis Investigators Pediatric Outcomes STudies after PICU Investigators and the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network PICU COS Investigators. SUBJECTS: Measures to assess outcome domains of the PICU COS are as follows: cognitive, emotional, overall (including health-related quality of life), physical, and family health. Measures evaluating social health were also considered. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Measures were classified as general or additional based on generalizability across PICU populations, feasibility, and relevance to specific COS domains. Measures with high consensus, defined as 80% agreement for inclusion, were selected for the PICU COMS. Among 140 candidate measures, 24 were delineated as general (broadly applicable) and, of these, 10 achieved consensus for inclusion in the COMS (7 patient-oriented and 3 family-oriented). Six of the seven patient measures were applicable to the broadest range of patients, diagnoses, and developmental abilities. All were validated in pediatric populations and have normative pediatric data. Twenty additional measures focusing on specific populations or in-depth evaluation of a COS subdomain also met consensus for inclusion as COMS additional measures. CONCLUSIONS: The PICU COMS delineates measures to evaluate domains in the PICU COS and facilitates comparability across future research studies to characterize PICU survivorship and enable interventional studies to target long-term outcomes after critical illness.

Ready for Children Part II: Increasing Pediatric Care Coordination and Psychomotor Skills Evaluation in the Prehospital Setting.

Objectives: Treating pediatric patients often invokes discomfort and anxiety among emergency medical service (EMS) personnel. As part of the process to improve pediatric care in the prehospital system, the Health Resources and Services Administration (HRSA) Emergency Services for Children (EMSC) Program implemented two prehospital performance measures -access to a designated pediatric care coordinator (PECC) and skill evaluation using pediatric equipment-along with a multi-year plan to aid states in achieving the measures. Baseline data from a survey conducted in 2017 showed that less than 25% of EMS agencies had access to PECC and 47% performed skills evaluation using pediatric equipment at least twice a year. To evaluate change over time, the survey was again conducted in 2020, and agencies that participated in both years are compared. Methods: A web-based survey was sent to EMS agency administrators in 58 states and territories from January to March 2020. Descriptive statistics, odds ratios, and 95% confidence intervals were conducted. Results: The response rate was 56%. A total of 5,221 agencies participated in both survey periods representing over 250,000 providers. The percentage of agencies reporting the presence of a PECC increased from 24% to 34% (p= <0.001). However, some agencies reported that they no longer had a PECC, while others reported having a PECC for the first time. Fifty percent (50%) of agencies conduct pediatric psychomotor skills evaluation at least twice/year, a 2% increase over time (p = 0.041); however, a third (34%) evaluate skills using pediatric equipment less than once a year. The presence of a PECC continues to be the variable associated with the highest odds (AOR 2.15, 95% CI 1.91-2.43) of conducting at least semiannual skills evaluation.Conclusions: There is an increase in the presence of pediatric care coordination and the frequency of pediatric psychomotor skills evaluation among national EMS agencies over time. Continued efforts to increase and sustain PECC presence should be an ongoing focus to improve pediatric readiness in the prehospital system.

Sharp Edge Eye Syndrome: A Case Report and Survey of Self-Identified Individuals.

BACKGROUND: Sharp edge eye syndrome (SEES), sometimes known as visual looming syndrome, is a condition in which the patient experiences ocular pain or discomfort when viewing or mentally picturing sharp objects and edges. Patients may present for medical care because they perceive the condition to represent an ophthalmic problem or a sign of a more serious underlying condition. An individual case report of SEES is included to aid in illustrating syndrome characteristics. Our aim is to describe the syndrome, vision-related quality of life (VRQOL), and psychosocial characteristics in patients with self-identified SEES. METHODS: A cross-sectional web-based survey was made available on social media webpages dedicated to SEES. The study included 22 questions developed by the research team, demographic questions, and 4 standardized questionnaires [ID Migraine, the National Eye Institute's Visual Function Questionnaire (NEI-VFQ-25), General Anxiety Disorder-2 (GAD-2), and Patient Health Questionnaire (depression) Scale-2]. RESULTS: Seventy-seven respondents had an average age of 29 and were 57% male. 92% reported symptoms before age 18. The main site of pain or discomfort was the eyes, with onset resulting from viewing or thinking of sharp objects and edges. Symptoms lasted from seconds to hours and could be prolonged even after closing eyes or avoiding viewing the trigger. The composite and subscale scores on the NEI-VFQ-25 were low, with a mean composite score of 78 and selected subscores of general health (61), general vision (73), ocular pain (68), driving (79), mental health (61), and role difficulties (72). Anxiety was reported in 58% of participants, and depression in 57%. Migraine or headache was reported in 46% of participants. Participants reported Alice in Wonderland syndrome, visual snow, obsessive-compulsive disorder, attention deficit hyperactivity disorder, stripe-induced visual discomfort, and synesthesia. CONCLUSION: From this survey, we have the beginnings of an understanding of the characteristics of SEES, as well as VRQOL impacts. These survey responses lead us to postulate that SEES may be a distinct visual phenomenon and to propose SEES criteria. Systematic studies of this condition's clinical features and treatment responses will be additional steps toward improving patient care.

Incentive delivery timing and follow-up survey completion in a prospective cohort study of injured children: a randomized experiment comparing prepaid and postpaid incentives.

BACKGROUND: Retaining participants over time is a frequent challenge in research studies evaluating long-term health outcomes. This study's objective was to compare the impact of prepaid and postpaid incentives on response to a six-month follow-up survey. METHODS: We conducted an experiment to compare response between participants randomized to receive either prepaid or postpaid cash card incentives within a multisite study of children under 15 years in age who were hospitalized for a serious, severe, or critical injury. Participants were parents or guardians of enrolled children. The primary outcome was survey response. We also examined whether demographic characteristics were associated with response and if incentive timing influenced the relationship between demographic characteristics and response. We evaluated whether incentive timing was associated with the number of calls needed for contact. RESULTS: The study enrolled 427 children, and parents of 420 children were included in this analysis. Follow-up survey response did not differ according to the assigned treatment arm, with the percentage of parents responding to the survey being 68.1% for the prepaid incentive and 66.7% with the postpaid incentive. Likelihood of response varied by demographics. Spanish-speaking parents and parents with lower income and lower educational attainment were less likely to respond. Parents of Hispanic/Latino children and children with Medicaid insurance were also less likely to respond. We found no relationship between the assigned incentive treatment and the demographics of respondents compared to non-respondents. CONCLUSIONS: Prepaid and postpaid incentives can obtain similar participation in longitudinal pediatric critical care outcomes research. Incentives alone do not ensure retention of all demographic subgroups. Strategies for improving representation of hard-to-reach populations are needed to address health disparities and ensure the generalizability of studies using these results.

Prevalence of specialised palliative care consultation for eligible children within a paediatric cardiac ICU.

OBJECTIVE: Retrospectively apply criteria from Center to Advance Palliative Care to a cohort of children treated in a cardiac ICU and compare children who received a palliative care consultation to those who were eligible for but did not receive one. METHODS: Medical records of children admitted to a cardiac ICU between January 2014 and June 2017 were reviewed. Selected criteria include cardiac ICU length of stay >14 days and/or ≥ 3 hospitalisations within a 6-month period. MEASUREMENTS AND RESULTS: A consultation occurred in 17% (n = 48) of 288 eligible children. Children who received a consult had longer cardiac ICU (27 days versus 17 days; p < 0.001) and hospital (91 days versus 35 days; p < 0.001) lengths of stay, more complex chronic conditions at the end of first hospitalisation (3 versus1; p < 0.001) and the end of the study (4 vs.2; p < 0.001), and higher mortality (42% versus 7%; p < 0.001) when compared with the non-consulted group. Of the 142 pre-natally diagnosed children, only one received a pre-natal consult and 23 received it post-natally. Children who received a consultation (n = 48) were almost 2 months of age at the time of the consult. CONCLUSIONS: Less than a quarter of eligible children received a consultation. The consultation usually occurred in the context of medical complexity, high risk of mortality, and at an older age, suggesting potential opportunities for more and earlier paediatric palliative care involvement in the cardiac ICU. Screening criteria to identify patients for a consultation may increase the use of palliative care services in the cardiac ICU.

Characteristics Associated With Presence of Pediatric Mental Health Care Policies in Emergency Departments.

OBJECTIVES: The majority of US children do not have access to an emergency department (ED) with a pediatric mental health care policy in place. Our objective was to understand factors associated with whether US EDs have a pediatric mental health care policy. METHODS: We analyzed data from the National Pediatric Readiness Project, a nationally representative cross-sectional survey of US EDs. Nurse managers reported whether their hospitals had a policy to care for children with social/mental health concerns (n = 3612). We calculated prevalence estimates, prevalence ratios (PRs), and confidence intervals (CIs) for regional and ED characteristics (eg, rurality and types of personnel) by whether EDs had a pediatric mental health care policy. RESULTS: Overall, 46.2% (n = 1668/3612) of EDs had a pediatric mental health care policy. Emergency departments located in remote areas were 60% less likely to have such a policy compared with EDs in urban areas (PR, 0.4; CI, 0.3-0.5). Emergency department characteristics associated with having a pediatric mental health care policy included having a policy to transfer children with social/mental health concerns (PR, 5.4; CI, 4.7-6.2), having a policy to address maltreatment (PR, 3.4; CI, 2.6-4.4), and having nurse and physician pediatric emergency care coordinators (PR, 1.6; CI, 1.5-1.8). CONCLUSIONS: Lower prevalence of pediatric mental health policies in rural EDs is concerning considering EDs are often the first point of contact for pediatric patients. This work highlights the importance of pediatric emergency care coordinators in fostering ED capacity to meet children's mental health needs.

Postdischarge Outcome Domains in Pediatric Critical Care and the Instruments Used to Evaluate Them: A Scoping Review.

OBJECTIVES: Assessing outcomes after pediatric critical illness is imperative to evaluate practice and improve recovery of patients and their families. We conducted a scoping review of the literature to identify domains and instruments previously used to evaluate these outcomes. DESIGN: Scoping review. SETTING: We queried PubMed, EMBASE, PsycINFO, Cumulative Index of Nursing and Allied Health Literature, and the Cochrane Central Register of Controlled Trials Registry for studies evaluating pediatric critical care survivors or their families published between 1970 and 2017. We identified articles using key words related to pediatric critical illness and outcome domains. We excluded articles if the majority of patients were greater than 18 years old or less than 1 month old, mortality was the sole outcome, or only instrument psychometrics or procedural outcomes were reported. We used dual review for article selection and data extraction and categorized outcomes by domain (overall health, emotional, physical, cognitive, health-related quality of life, social, family). SUBJECTS: Manuscripts evaluating outcomes after pediatric critical illness. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Of 60,349 citations, 407 articles met inclusion criteria; 87% were published after 2000. Study designs included observational (85%), interventional (7%), qualitative (5%), and mixed methods (3%). Populations most frequently evaluated were traumatic brain injury (n = 96), general pediatric critical illness (n = 87), and congenital heart disease (n = 72). Family members were evaluated in 74 studies (18%). Studies used a median of 2 instruments (interquartile range 1-4 instruments) and evaluated a median of 2 domains (interquartile range 2-3 domains). Social (n = 223), cognitive (n = 183), and overall health (n = 161) domains were most frequently studied. Across studies, 366 unique instruments were used, most frequently the Wechsler and Glasgow Outcome Scales. Individual domains were evaluated using a median of 77 instruments (interquartile range 39-87 instruments). CONCLUSIONS: A comprehensive, generalizable understanding of outcomes after pediatric critical illness is limited by heterogeneity in methodology, populations, domains, and instruments. Developing assessment standards may improve understanding of postdischarge outcomes and support development of interventions after pediatric critical illness.

A Core Outcome Set for Pediatric Critical Care.

OBJECTIVES: More children are surviving critical illness but are at risk of residual or new health conditions. An evidence-informed and stakeholder-recommended core outcome set is lacking for pediatric critical care outcomes. Our objective was to create a multinational, multistakeholder-recommended pediatric critical care core outcome set for inclusion in clinical and research programs. DESIGN: A two-round modified Delphi electronic survey was conducted with 333 invited research, clinical, and family/advocate stakeholders. Stakeholders completing the first round were invited to participate in the second. Outcomes scoring greater than 69% "critical" and less than 15% "not important" advanced to round 2 with write-in outcomes considered. The Steering Committee held a virtual consensus conference to determine the final components. SETTING: Multinational survey. PATIENTS: Stakeholder participants from six continents representing clinicians, researchers, and family/advocates. MEASUREMENTS AND MAIN RESULTS: Overall response rates were 75% and 82% for each round. Participants voted on seven Global Domains and 45 Specific Outcomes in round 1, and six Global Domains and 30 Specific Outcomes in round 2. Using overall (three stakeholder groups combined) results, consensus was defined as outcomes scoring greater than 90% "critical" and less than 15% "not important" and were included in the final PICU core outcome set: four Global Domains (Cognitive, Emotional, Physical, and Overall Health) and four Specific Outcomes (Child Health-Related Quality of Life, Pain, Survival, and Communication). Families (n = 21) suggested additional critically important outcomes that did not meet consensus, which were included in the PICU core outcome set-extended. CONCLUSIONS: The PICU core outcome set and PICU core outcome set-extended are multistakeholder-recommended resources for clinical and research programs that seek to improve outcomes for children with critical illness and their families.

Statewide Pediatric Facility Recognition Programs and Their Association with Pediatric Readiness in Emergency Departments in the United States.

OBJECTIVE: To describe the relationship between statewide pediatric facility recognition (PFR) programs and pediatric readiness in emergency departments (EDs) in the US. STUDY DESIGN: Data were extracted from the 2013 National Pediatric Readiness Project assessment (4083 EDs). Pediatric readiness was assessed using the weighted pediatric readiness score (WPRS) based on a 100-point scale. Descriptive statistics were used to compare WPRS between recognized and nonrecognized EDs and between states with or without a PFR program. A linear mixed model with WPRS was used to evaluate state PFR programs on pediatric readiness. RESULTS: Eight states were identified with a PFR program. EDs in states with a PFR program had a higher WPRS compared with states without a PFR program (overall a 9.1-point higher median WPRS; P < .001); EDs recognized in a PFR program had a 21.7-point higher median WPRS compared with nonrecognized EDs (P < .001); and between states with a statewide PFR program, there was high variability of participation within the states. We found state-level PFR programs predicted a higher WPRS compared with states without a PFR program (ß = 5.49; 95% CI 2.76-8.23). CONCLUSIONS: Statewide PFR programs are based on national guidelines and identify those EDs that adhere to a standard level of readiness for children. These statewide PFR initiatives are associated with higher pediatric readiness. As scalable strategies are needed to improve emergency care for children, our study suggests that statewide PFR programs may be one way to improve pediatric readiness and underscores the need for further implementation and evaluation.

International meeting on Wolf-Hirschhorn syndrome: Update on the nosology and new insights on the pathogenic mechanisms for seizures and growth delay.

"An International Meeting on Wolf-Hirschhorn Syndrome (WHS)" was held at The University Hospital La Paz in Madrid, Spain (October 13-14, 2017). One hundred and twenty-five people, including physicians, scientists and affected families, attended the meeting. Parent and patient advocates from the Spanish Association of WHS opened the meeting with a panel discussion to set the stage regarding their hopes and expectations for therapeutic advances. In keeping with the theme on therapeutic development, the sessions followed a progression from description of the phenotype and definition of therapeutic endpoints, to definition of genomic changes. These proceedings will review the major points of discussion.

An Assessment of Clinical and System Drivers of Family Satisfaction in the PICU.

OBJECTIVE: Investigate clinical and system drivers of family satisfaction in the PICU. DESIGN: Mixed methods qualitative and quantitative (observational) study. Qualitative interviews with families were performed as a pilot to inform modality of survey distribution based on family preferences. A validated pediatric satisfaction survey deployed to family members for 7 months with a corresponding chart review and administrative data collection. SETTING: PICU in a tertiary children's hospital. PATIENTS: Two hundred six families of patients admitted to the PICU more than 48 hours. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Families preferred surveys distributed electronically on a tablet in the PICU setting. The Pediatric Family Satisfaction-ICU survey was used to assess comfort with medical decision-making and communication with the care team. Capture rate of all eligible patients was 69.5% and response rate was 90.8%. Overall, 64.7% of respondents were highly satisfied, whereas over one third were not highly satisfied; families of Hispanic ethnicity (odds ratio of lower satisfaction of families with Hispanic ethnicity: 2.09; 95% CI, 1.01-4.33; p = 0.047) and high social stressors (odds ratio of higher satisfaction among high stressed subgroup: 0.49; 95% CI, 0.24-0.99; p = 0.047) reported statistically significant lower satisfaction. Additional free-text responses were identified in 21% of respondents, with the majority of comments indicating wishes for improvements clustered around communication with the medical team or sleeping environment of families and patients. CONCLUSIONS: High capture rates of family satisfaction in the PICU can be obtained with a PICU-specific survey, limiting barriers to completion by including family preferences, and distributing in the PICU setting. Less than two-third of PICU families are highly satisfied; patients of Hispanic ethnicity and those with high social stressors predict low satisfaction, whereas illness severity, age, and PICU length of stay did not have statistical significance. Local improvement teams can use this approach to drive enhanced satisfaction.

Palliative Care in Children With Heart Disease Treated in an ICU.

OBJECTIVES: Describe pediatric palliative care consult in children with heart disease; retrospectively apply Center to Advance Palliative Care criteria for pediatric palliative care consults; determine the impact of pediatric palliative care on end of life. DESIGN: A retrospective single-center study. SETTING: A 16-bed cardiac ICU in a university-affiliated tertiary care children's hospital. PATIENTS: Children (0-21 yr old) with heart disease admitted to the cardiac ICU from January 2014 to June 2017. MEASUREMENTS AND MAIN RESULTS: Over 1,000 patients (n = 1, 389) were admitted to the cardiac ICU with 112 (8%) receiving a pediatric palliative care consultation. Patients who received a consult were different from those who did not. Patients who received pediatric palliative care were younger at first hospital admission (median 63 vs 239 d; p = 0.003), had a higher median number of complex chronic conditions at the end of first hospitalization (3 vs 1; p < 0.001), longer cumulative length of stay in the cardiac ICU (11 vs 2 d; p < 0.001) and hospital (60 vs 7 d; p < 0.001), and higher mortality rates (38% vs 3%; p < 0.001). When comparing location and modes of death, patients who received pediatric palliative care were more likely to die at home (24% vs 2%; p = 0.02) and had more comfort care at the end of life (36% vs 2%; p = 0.002) compared to those who did not. The Center to Advance Palliative Care guidelines identified 158 patients who were eligible for pediatric palliative care consultation; however, only 30 patients (19%) in our sample received a consult. CONCLUSIONS: Pediatric palliative care consult rarely occurred in the cardiac ICU. Patients who received a consult were medically complex and experienced high mortality. Comfort care at the end of life and death at home was more common when pediatric palliative care was consulted. Missed referrals were apparent when Center to Advance Palliative Care criteria were retrospectively applied.

Assessing Infrastructure to Care for Pediatric Patients in the Prehospital Setting.

OBJECTIVES: Pediatric patients represent a small proportion of emergency medical services (EMS) calls, challenging providers in maintaining skills in treating children. Having structural capacity to appropriately diagnose and treat pediatric patients is critical. Our study measured the availability of off-line and on-line medical direction and recommended pediatric equipment at EMS agencies. METHODS: A Web-based survey was sent to EMS agencies in 2010 and 2013, and results were analyzed to determine availability of medical direction and equipment. RESULTS: Approximately 5000 agencies in 32 states responded, representing over 80% response. Availability of off-line medical direction increased between years (78% in 2010 to 85% in 2013), was lower for basic life support (BLS) (63% and 72%) than advanced life support (ALS) agencies (90% and 93%), and was generally higher in urban than rural or frontier locations. On-line medical direction was consistently available (90% both years) with slight increases for BLS agencies (87% to 90%) and slightly greater availability for urban and rural compared with frontier agencies. The majority of agencies carried most recommended equipment; however, less than one third of agencies reported carrying all equipment. Agencies with off-line medical direction, on-line medical direction, and with both off-line and on-line medical direction were respectively 1.69, 1.31, and 2.21 times more likely to report carrying all recommended equipment. CONCLUSIONS: Basic structural capacity exists in EMS for treating children, with improvements seen over time. However, gaps remain, particularly for BLS and nonurban agencies. Continuous attention to infrastructure is necessary, and the recent development of national performance measures should further promote quality emergency care for all children.

"In Africa, There Was No Family Planning. Every Year You Just Give Birth": Family Planning Knowledge, Attitudes, and Practices Among Somali and Congolese Refugee Women After Resettlement to the United States.

It is crucial for refugee service providers to understand the family planning knowledge, attitudes, and practices of refugee women following third country resettlement. Using an ethnographic approach rooted in Reproductive Justice, we conducted six focus groups that included 66 resettled Somali and Congolese women in a western United States (US) metropolitan area. We analyzed data using modified grounded theory. Three themes emerged within the family planning domain: (a) concepts of family, (b) fertility management, and (c) unintended pregnancy. We contextualized these themes within existing frameworks for refugee cultural transition under the analytic paradigms of "pronatalism and stable versus evolving family structure" and "active versus passive engagement with family planning." Provision of just and equitable family planning care to resettled refugee women requires understanding cultural relativism, social determinants of health, and how lived experiences influence family planning conceptualization. We suggest a counseling approach and provider practice recommendations based on our study findings.

Ready for Children: Assessing Pediatric Care Coordination and Psychomotor Skills Evaluation in the Prehospital Setting.

Objective: Pediatric patients represent low frequency but potentially high-risk encounters for emergency medical services (EMS) providers. Scant information is available from EMS agencies on the frequency of pediatric skill evaluation and the presence of pediatric emergency care coordination, both which may help EMS systems optimize care for children. The objective of our study was to assess the frequency and type of methods used to assess psychomotor skills competency using pediatric-specific equipment and pediatric care coordination in EMS ground transport agencies. Methods: A web-based assessment was sent to EMS agency directors in 58 states/territories to determine the presence of pediatric care coordination defined as an individual who oversees pediatric issues (Pediatric Care Coordinator or PECC) and the process for evaluating psychomotor skills of EMS providers using of pediatric equipment. Basic demographic information of each agency was collected. Descriptive statistics, odds ratios, and 95% confidence intervals were used for analyses. Results: The response rate was 78% (8,166/10,463 agencies). Almost 80% of agencies respond to fewer than 100 pediatric calls a year; over half of the agencies are located in urban areas and provide Advanced Life Support care. Twenty-three percent (23%) of EMS agency administrators report having a PECC and 28% have plans or interest in adding one. Of those agencies with a PECC, 26% report sharing the position among several agencies. Almost half (47%) of EMS agencies evaluate pediatric psychomotor skills at least twice a year. Agencies with a PECC, those with a medium to medium high pediatric call volume and agencies located in urban areas are more likely to evaluate psychomotor skills at least twice a year. Conclusions: Although few EMS agencies currently have a PECC, there is interest among EMS agency administrators to integrate one into their system. Pediatric-specific psychomotor skills testing is more common in EMS agencies that respond to a higher pediatric call volume and have a PECC. For EMS agencies that infrequently treat children, the presence of a PECC may enhance the frequency of pediatric psychomotor skills evaluation. The presence of a PECC can potentially increase provider confidence and safety for all pediatric prehospital patients regardless of volume and location.

Transitions of Care: The Presence of Written Interfacility Transfer Guidelines and Agreements for Pediatric Patients.

OBJECTIVE: Every year, emergency medical services agencies transport approximately 150,000 pediatric patients between hospitals. During these transitions of care, patient safety may be affected and contribute to adverse events when important clinical information is missing, incomplete, or inaccurate. Written interfacility transfer policies are one way to standardize procedures and facilitate communication between the hospitals leading to improved patient safety and satisfaction for children and families. METHODS: We assessed the presence and components of written interfacility transfer guidelines and agreements for pediatric patients via a survey sent to US hospital emergency department (ED) nurse managers during 2010 and 2013. RESULTS: Although there was an increase in the presence of written interfacility transfer guidelines and agreements, a third of hospitals did not have either by 2013, and only 50% had guidelines with all recommended pediatric components. Hospitals with medium and low ED pediatric patient volumes were less likely to have written guidelines or agreements compared with hospitals with high volume. Hospitals with advanced pediatric resources, such as a pediatric emergency care coordinator or EDs designated approved for pediatrics, were more likely to have guidelines or agreements than less resourced hospitals. CONCLUSIONS: Although there was improvement over time, opportunities exist for increasing the presence of written interfacility transfer guidelines as well as agreements for pediatric patients. Further studies are needed to demonstrate whether improved delivery of patient care is associated with the presence of written interfacility transfer guidelines and agreements and to identify other elements in the process to ensure optimal pediatric patient care.

Access to High Pediatric-Readiness Emergency Care in the United States.

OBJECTIVE: To determine the geographic accessibility of emergency departments (EDs) with high pediatric readiness by assessing the percentage of US children living within a 30-minute drive time of an ED with high pediatric readiness, as defined by collaboratively developed published guidelines. STUDY DESIGN: In this cross-sectional analysis, we examined geographic access to an ED with high pediatric readiness among US children. Pediatric readiness was assessed using the weighted pediatric readiness score (WPRS) of US hospitals based on the 2013 National Pediatric Readiness Project (NPRP) survey. A WPRS of 100 indicates that the ED meets the essential guidelines for pediatric readiness. Using estimated drive time from ZIP code centroids, we determined the proportions of US children living within a 30-minute drive time of an ED with a WPRS of 100 (maximum), 94.3 (90th percentile), and 83.6 (75th percentile). RESULTS: Although 93.7% of children could travel to any ED within 30 minutes, only 33.7% of children could travel to an ED with a WPRS of 100, 55.3% could travel to an ED with a WPRS at or above the 90th percentile, and 70.2% could travel to an ED with a WPRS at or above the 75th percentile. Among children within a 30-minute drive of an ED with the maximum WPRS, 90.9% lived closer to at least 1 alternative ED with a WPRS below the maximum. Access varied across census divisions, ranging from 14.9% of children in the East South Center to 56.2% in the Mid-Atlantic for EDs scoring a maximum WPRS. CONCLUSION: A significant proportion of US children do not have timely access to EDs with high pediatric readiness.

A survey of antiepileptic drug responses identifies drugs with potential efficacy for seizure control in Wolf-Hirschhorn syndrome.

Seizures are present in over 90% of infants and children with Wolf-Hirschhorn syndrome (WHS). When present, they significantly affect quality of life. The goal of this study was to use caregiver reports to describe the comparative efficacies of commonly used antiepileptic medications in a large population of individuals with WHS. A web-based, confidential caregiver survey was developed to capture seizure semiology and a chronologic record of seizure treatments as well as responses to each treatment. Adverse events for each drug were also cataloged. We received 141 complete survey responses (47% response rate) describing the seizures of individuals ranging in age from 4months to 61years (90 females: 51 males). Using the Early Childhood Epilepsy Severity Scale (E-Chess), WHS-associated seizures are demonstrably severe regardless of deletion size. The best-performing antiepileptic drugs (AEDs) for controlling seizures in this cohort were broad spectrum drugs clobazam, levetiracetam, and lamotrigine; whereas, the three commonly used carboxamide class drugs: carbamazepine, phenytoin, and oxcarbazepine, were reported to have little effect on, or even exacerbate, seizures. The carboxamide class drugs, along with phenobarbital and topiramate, were also associated with the highest rate of intolerance due to cooccurrence of adverse events. Levetiracetam, clobazam, and clonazepam demonstrated higher tolerability and comparatively less severe adverse events (Wilcoxon rank sum comparison between performance of levetiracetam and carboxamide class drugs gives a p<0.0001 after multiple comparison adjustment). This is the largest survey to date assessing WHS seizures. This study design is susceptible to possible bias, as the data are largely drawn from caregiver report and investigators had limited access to medical records. Despite this, our data suggest that the genetic etiology of seizures, together with an accurate electroclinical delineation, are important components of drug selection, even in contiguous gene syndromes which may have complex seizure etiologies.

Perceived social risk in medical decision-making for physical child abuse: a mixed-methods study.

BACKGROUND: The medical literature reports differential decision-making for children with suspected physical abuse based on race and socioeconomic status. Differential evaluation may be related to differences of risk indicators in these populations or differences in physicians' perceptions of abuse risk. Our objective was to understand the contribution of the child's social ecology to child abuse pediatricians' perception of abuse risk and to test whether risk perception influences diagnostic decision-making. METHODS: Thirty-two child abuse pediatrician participants prospectively contributed 746 consultations from for children referred for physical abuse evaluation (2009-2013). Participants entered consultations to a web-based interface. Participants noted their perception of child race, family SES, abuse diagnosis. Participants rated their perception of social risk for abuse and diagnostic certainty on a 1-100 scale. Consultations (n = 730) meeting inclusion criteria were qualitatively analyzed for social risk indicators, social and non-social cues. Using a linear mixed-effects model, we examined the associations of social risk indicators with participant social risk perception. We reversed social risk indicators in 102 cases whilst leaving all injury mechanism and medical information unchanged. Participants reviewed these reversed cases and recorded their social risk perception, diagnosis and diagnostic certainty. RESULTS: After adjustment for physician characteristics and social risk indicators, social risk perception was highest in the poorest non-minority families (24.9 points, 95%CI: 19.2, 30.6) and minority families (17.9 points, 95%CI, 12.8, 23.0). Diagnostic certainty and perceived social risk were associated: certainty increased as social risk perception increased (Spearman correlation 0.21, p < 0.001) in probable abuse cases; certainty decreased as risk perception increased (Spearman correlation (-)0.19, p = 0.003) in probable not abuse cases. Diagnostic decisions changed in 40% of cases when social risk indicators were reversed. CONCLUSIONS: CAP risk perception that poverty is associated with higher abuse risk may explain documented race and class disparities in the medical evaluation and diagnosis of suspected child physical abuse. Social risk perception may act by influencing CAP certainty in their diagnosis.