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Ultraviolet radiation (UVR) exposure is the most important modifiable risk factor for skin cancer development. Although sunscreen and sun-protective clothing are essential tools to minimize UVR exposure, few studies have compared the two modalities head-to-head. This study evaluates the UV-protective capacity of four modern, sun-protective textiles and two broad-spectrum, organic sunscreens (SPF 30 and 50). Sun Protection Factor (SPF), Ultraviolet Protection Factor (UPF), Critical Wavelength (CW), and % UVA- and % UVB-blocking were measured for each fabric. UPF, CW, % UVA- and % UVB-blocking were measured for each sunscreen at 2 mg/cm2 (recommended areal density) and 1 mg/cm2 (simulating real-world consumer application). The four textiles provided superior UVR protection when compared to the two sunscreens tested. All fabrics blocked erythemogenic UVR better than the sunscreens, as measured by SPF, UPF, and % UVB-blocking. Each fabric was superior to the sunscreens in blocking full-spectrum UVR, as measured by CW and % UVA-blocking. Our data demonstrate the limitations of sunscreen and UV-protective clothing labeling and suggest the combination of SPF or UPF with % UVA-blocking may provide more suitable measures for broad-spectrum protection. While sunscreen remains an important photoprotective modality (especially for sites where clothing is impractical), these data suggest that clothing should be considered the cornerstone of UV protection.

Objective Children with invasive home mechanical ventilation (HMV) are a growing population with complex health service needs. Single institution studies provide insight into successful program structures and outcomes. Our study objectives were to assess health service structures, providers, and programs caring for this population throughout the U.S., and to understand barriers to high-quality care. Design Using purposeful sampling with capture-recapture and snowball sampling methods, we identified key informants for care of the U.S. pediatric HMV population. Informants received web-based surveys with two reminders. Survey domains included respondent characteristics, HMV team composition, and barriers to care. Results Survey response was 71% with 101 completed. Respondents caring for patients in 45 states included physicians (61%), nurses (20%), therapists (12%), case managers (4%), and social workers (2%). Half (53%) of physicians were fellowship trained, most commonly pulmonology (22%) and critical care medicine (13%). The majority (65%) of providers described a dedicated HMV service. The majority (61%) of respondents from a HMV service provided both inpatient and outpatient care. Nearly all respondents (96%) described an inadequate supply of home nurses and 88% reported inadequate respite facilities. Conclusions Children with HMV assistance receive care from a diverse group of providers with varied team structure. Heterogeneity may reflect patient diversity and provider interest, increasing efficacy but challenging standardization nationwide. Despite team structure variability, similar home care difficulties were universally experienced. Data suggest that the home nursing shortage is a national impediment to quality and efficient discharge with limited community-based support for this vulnerable population.

This Viewpoint presents and discusses the development of the first core principles and standards for effective, personalised care of children living with complex care needs in Europe. These principles and standards emerged from an analysis of data gathered on several areas, including the integration of care for the child at the acute-community interface, the referral-discharge interface, the social care interface, nursing preparedness for practice, and experiences of the child and family. The three main principles, underpinned by a child-centric approach, are access to care, co-creation of care, and effective integrated governance. Collectively, the principles and standards offer a means to benchmark existing services for children living with complex care needs, to influence policy in relation to service delivery for these children, and to provide a suite of indicators with which to assess future service developments in this area.

The Healthy People 2020 (HP2020) Midcourse Review (MCR) presents an opportunity for professionals in the disability and health field to contemplate preliminary progress toward achieving specific health objectives. The MCR showed notable progress in access to primary care, appropriate services for complex conditions associated with disability, expansion of health promotion programs focusing on disability, improving mental health, and reducing the unemployment rate among job seekers with disabilities. This commentary presents potential considerations, at least in part, for such progress including increased access to health care, greater awareness of appropriate services for complex conditions, and opportunities for societal participation. Additional considerations are provided to address the lack of progress in employment among this population -- a somewhat different measure than that for unemployment. Continuing to monitor these objectives will help inform programs, policies, and practices that promote the health of people with disabilities as measured by HP2020.

Hospitalizations for ambulatory care-sensitive conditions (ACSC) are measured to indicate health care system quality, with the premise that fewer hospitalizations would occur with better preceding outpatient care. Our objectives were to identify outpatient care received in the 7 days preceding acute pediatric hospitalizations and to compare receipt of outpatient care by hospitalization type (ACSC vs non-ACSC).This retrospective observational study used a 10-state database of Medicaid claims to identify outpatient visits within 7 days before acute unplanned hospitalization for children aged 0 to 17 years. We used logistic regression to assess the relationship between hospitalization type and occurrence of a preceding outpatient clinic visit, controlling for patient age, race/ethnicity, type of Medicaid, and complex chronic conditions.Of 254,902 hospitalizations, 28.6% had a preceding outpatient visit. Thirty-five percent of hospitalizations were for ACSC. A greater percentage of ACSC versus non-ACSC hospitalizations had a preceding outpatient visit (31.1% vs 27.3%, P .001). In multivariable analysis, characteristics associated with a preceding outpatient visit were age1 versus 13 to 17 years (adjusted odds ratio [aOR] 2.4; 95% confidence interval [CI] 2.3-2.5), ≥2 vs 0 complex chronic conditions (aOR 1.9; 95% CI 1.8-2.0), Medicaid managed care versus fee for service (aOR 1.2; 95% CI 1.2-1.3), and ACSC versus non-ACSC hospitalization (aOR 1.2; 95% CI 1.1-1.2).Although receipt of outpatient care was modestly higher in children hospitalized with an ACSC, most hospitalized children did not receive preceding outpatient care. Further investigation is needed to assess why such a large proportion of children do not receive outpatient care before acute unplanned hospitalization, especially for ACSC.

A rectangular single-expansion ramp nozzle (SERN) with an aft deck is used to model the exhaust from a three-stream engine. At the nozzle exit two unmixed streams exist. The first is assumed to be ...

Objectives Interventions to reduce frequent emergency department (ED) use in children are often limited by the inability to predict future risk. We sought to develop a population-based model for predicting Medicaid-insured children at risk for high frequency (HF) of low-resource-intensity (LRI) ED visits. Methods We conducted a retrospective cohort analysis of Medicaid-insured children (aged 1–18 years) included in the MarketScan Medicaid database with ≥1 ED visit in 2013. LRI visits were defined as ED encounters with no laboratory testing, imaging, procedures, or hospitalization; and HF as ≥3 LRI ED visits within 365 days of the initial encounter. A generalized linear regression model was derived and validated using a split-sample approach. Validity testing was conducted examining model performance using 3 alternative definitions of LRI. Results Among 743,016 children with ≥1 ED visit in 2013, 5% experienced high-frequency LRI ED use, accounting for 21% of all LRI visits. Prior LRI ED use (2 visits: adjusted odds ratio = 3.5; 95% confidence interval, 3.3, 3.7; and ≥3 visits: adjusted odds ratio = 7.7; 95% confidence interval, 7.3, 8.1) and presence of ≥3 chronic conditions (adjusted odds ratio = 1.7; 95% confidence interval, 1.6, 1.8) were strongly associated with future HF-LRI ED use. A model incorporating patient characteristics and prior ED use predicted future HF-LRI ED utilization with an area under the curve of 0.74. Conclusions Demographic characteristics and patterns of prior ED use can predict future risk of HF-LRI ED use in the following year. Interventions for reducing low-value ED use in these high-risk children should be considered.

Those in hospitals and health care systems, when designing clinical programs for children with medical complexity, often talk about needing to develop and implement a system of risk stratification. In this article, we use the framework of an ethical evaluation of a health care program to examine what this task of risk stratification might entail by identifying specific and detailed issues that require particular attention and making a series of recommendations to help ensure that programs for children with medical complexity avoid potentially ethically problematic situations and practices.

Discourse about childhood chronic conditions has transitioned in the last decade from focusing primarily on broad groups of children with special health care needs to concentrating in large part on smaller groups of children with medical complexity (CMC). Although a variety of definitions have been applied, the term CMC has most commonly been defined as children and youth with serious chronic conditions, substantial functional limitations, increased health and other service needs, and increased health care costs. The increasing attention paid to CMC has occurred because these children are growing in impact, represent a disproportionate share of health system costs, and require policy and programmatic interventions that differ in many ways from broader groups of children with special health care needs. But will this change in focus lead to meaningful changes in outcomes for children with serious chronic diseases, or is the pediatric community simply adopting terminology with resonance in adult-focused health systems? In this article, we will explore the implications of the rapid emergence of pediatric complex care in child health services practice and research. As an emerging field, pediatric care systems should thoughtfully and rapidly develop evidence-based solutions to the new challenges of caring for CMC, including (1) clearer definitions of the target population, (2) a more appropriate incorporation of components of care that occur outside of hospitals, and (3) a more comprehensive outcomes measurement framework, including the recognition of potential limitations of cost containment as a target for improved care for CMC.

To describe health-care spending and utilization for infants discharged from the neonatal intensive care unit (NICU). Retrospective cohort analysis of 4973 NICU graduates in the Truven MarketScan Medicaid database, with follow-up to the third birthday. Health-care spending and utilization after NICU discharge were assessed. Using logistic regression, we assessed clinical characteristics associated with hospitalization and emergency department (ED) visits. Most (69.5%) post-NICU spending occurred within the first year [$33,276 per member per year]. Inpatient care accounted for most (71.6%) of the 3-year spending. The percentages of infants with a 1-year readmission or ED visit were 36.8% and 63.7%, respectively. Medical technology was associated with the highest likelihoods of hospital [aOR 17.8 (95%CI 12.2–26.0)] and ED use [aOR 2.3 (95%CI 1.8–3.0)]. Hospital care accounts for the majority of spending for NICU graduates. Infants with medical technology have the highest risk of hospital and ED use.

OBJECTIVE: Identify characteristics associated with hospital readmission due to bacterial respiratory tract infections (bRTI) after tracheotomy. STUDY DESIGN: Retrospective study of 8009 children 0–17 years undergoing tracheotomy from 2007–2013 at 48 children’s hospitals in the Pediatric Health Information System database. The primary outcome was first hospital admission after tracheotomy for bRTI (i.e. primary diagnosis of bRTI or a primary diagnosis of bRTI symptom and secondary diagnosis of bRTI). We used Cox-proportional hazard modeling to assess associations between patient demographic and clinical characteristics and bRTI hospital readmission. RESULTS: Median age at tracheotomy admission was 5 months [interquartile range (IQR): 1–50 months]. Thirty-six percent (n=2,899) had at least one bRTI admission. Median time-to-readmission for bRTI was 275 days (IQR: 141–530). Factors independently associated with increased risk for bRTI readmission were younger age [e.g., age 2 complex chronic conditions (vs. zero; aHR 1.96; 95% CI: 1.34–2.86) and discharge to home (vs. post-acute care setting; aHR 1.19; 95% CI: 1.08–1.32). Trauma diagnosis at tracheotomy (aHR 0.83; 95% CI: 0.69–1) and ventilator dependency (aHR 0.88; 95% CI: 0.81–0.97) were associated with decreased risk. CONCLUSIONS: Young, Hispanic children with multiple complex chronic conditions who use Medicaid insurance and are not discharged to post-acute care are at the highest risk for hospital readmission for bRTI post-tracheotomy. Future research should investigate strategies to mitigate this risk for these children.

Purpose Maintenance of immunosuppression in lung transplant recipients (LTx) is integral for preventing allograft rejection, with tacrolimus as a mainstay drug. Prior research from our group showed significantly poorer outcomes for Non-European Ancestry patients (Non-EA) as compared to those of European Ancestry (EA) and that donor-derived cell-free DNA (ddcfDNA) predicts molecular allograft injury in LTx. This study examines differences in immunosuppression between EA and Non-EA LTx in the context of disparate outcomes. Methods 453 LTx within two multicenter cohorts were analyzed based on self-identified race. Serial post-transplant tacrolimus blood levels and dosages were collected. Tacrolimus trough levels were dichotomized as “therapeutic” or “non-therapeutic” based on goal trough level ranges and were analyzed over 6-month periods up to 18 months post-transplant. Serial plasma samples were assayed for %ddcfDNA by shotgun sequencing and log-transformed to adjust for skewness. Results The study cohort was 80.1% EA and 19.9% Non-EA. The odds and mean number of therapeutic trough levels were similar between EA and Non-EA within the 0-6 (OR=0.98 95% CI 0.71 - 1.35, p=0.91), 6-12 (OR=2.25 95% CI 0.93 - 5.45, p=0.07), and 12-18-month (OR= 1.41 95% CI 0.73 - 2.71, p=0.31) intervals. However, non-EA patients required twofold higher median tacrolimus dosages to reach therapeutic trough levels as compared to EA patients (Fig. 1a). Furthermore, non-EA patients had significantly higher ddcfDNA levels as compared to non-EA (Fig. 1b). Conclusion Despite disparities in post-transplant outcomes, non-EA achieve similar therapeutic levels of tacrolimus as compared to EA but require significantly higher doses to do so. At a molecular level, non-EA showed significantly higher levels of molecular allograft injury as assessed by ddcfDNA despite equivalent immunosuppression trough levels. Further research is needed to investigate racial outcome disparities and use of ddcfDNA to augment immunosuppressive monitoring in minority LTx.

Objectives To compare emergency department (ED) visit rates for suicidal ideation and/or self-harm among youth by urban-rural location of residence. Study design This is a retrospective analysis of ED visits for suicidal ideation and/or self-harm by youths aged 5-19 years (n = 297 640) in the 2016 Nationwide Emergency Department Sample, a representative sample of all US ED visits. We used weighted Poisson generalized linear models to compare population-based visit rates by urban–rural location of patient residence, adjusted for age, sex, and US Census region. For self-harm visits, we compared injury mechanisms by urban-rural location. Results Among patients with ED visits for suicidal ideation and/or self-harm, the median age was 16 years, 65.9% were female, 15.9% had a rural location of patient residence, and 0.1% resulted in mortality. The adjusted ED visit rate for suicidal ideation/or and self-harm did not differ significantly by urban-rural location. For the subset of visits for self-harm, the adjusted visit rate was significantly higher in small metropolitan (adjusted incidence rate ratio [aIRR], 1.39; 95% CI, 1.01-1.90), micropolitan (aIRR, 1.46; 95% CI, 1.10-1.93), and noncore areas (aIRR, 1.39; 95% CI, 1.03-1.87) compared with large metropolitan areas. When stratified by injury mechanism, ED visit rates for self-inflicted firearm injuries were higher among youths living in rural areas compared with those in urban areas (aIRR, 3.03; 95% CI, 1.32-6.74). Conclusions Compared with youths living in urban areas, youths living in rural areas had higher ED visit rates for self-harm, including self-inflicted firearm injuries. Preventive approaches for self-harm based in community and ED settings might help address these differences.

OBJECTIVES: Of all hospitalized children, those with medical complexity have the highest likelihood of hospital readmission. Post-acute hospital care could potentially help stabilize the health of these children. We examined the frequency of acute care hospital admissions after discharge home from a post-acute care hospital (PACH). METHODS: A retrospective cohort analysis of 448 children with medical complexity discharged from a PACH from January 1, 2010, to December 31, 2015, with the main outcomes of acute care hospital readmissions 0 to 30 and 31 to 90 days after discharge home from a PACH. Demographic and clinical characteristics were compared between children with and without acute care readmission and between the 2 readmission groups. RESULTS: Ninety-nine children (22%) had a readmission to the acute care hospital. Of these readmissions, 61 (62%) occurred between 0 and 30 days and 38 (38%) between 31 and 90 days after PACH discharge. A higher percentage of children readmitted had high medical severity (>3 systems involved or ventilator dependent) compared with children not readmitted (68% vs 31%, P = .04). No differences were found between children who were readmitted and those who were not by sex, race, payer, length of stay, or age at PACH discharge. Additionally, no differences were found between children readmitted within 30 days and children readmitted 31 to 90 days after PACH discharge. CONCLUSIONS: The majority of children discharged home from a PACH do not require an acute care hospitalization within the first 3 months. Children with greater medical severity are readmitted more often than others.

Under pressure to avoid readmissions, hospitals are increasingly employing hospital-initiated postdischarge interventions (HiPDI), such as home visits and follow-up phone calls, to help patients after discharge. This study was conducted to assess the effectiveness of HiPDI on reducing hospital readmissions using a systematic review of clinical trials published between 1990 and 2014. We analyzed twenty articles on HiPDI (from 503 reviewed abstracts) containing 7,952 index hospitalizations followed for a median 3 months (range 1-24) after discharge for readmission. The two most common HiPDI included follow-up phone calls (n = 14, 70%) or home visits (n = 11, 55%); eighty-five percent (n = 17) of studies had multiple HiPDI. In meta-analysis, exposure to HiPDI was associated with a lower likelihood of readmission (odds ratio [OR], 0.8 [95% CI, 0.7-0.9]). Patients receiving ≥2 postdischarge home visits or ≥2 follow-up phone calls had the lowest likelihood of readmission (OR, 0.5 [95% CI, 0.4-0.8]). Hospital-initiated postdischarge interventions seem to have an effect on reducing hospital readmissions. Together, multiple home visits and follow-up phone calls may be the most effective HiPDI to reduce hospital readmission.

Time-resolved schlieren measurements were conducted on a supersonic rectangular multi-stream nozzle used for three-stream engines. The jet utilizes a single expansion ramp nozzle (SERN) configuration along with an bypass stream, operating at an ideally expanded bulk flow of M j , 1 = 1.6 and bypass stream of M j , 3 = 1.0 . Experiments were conducted with and without an aft deck to model airframe integration. Schlieren imaging was acquired up to 100 kHz in two different orientations. Proper orthogonal decomposition (POD) and dynamic mode decomposition (DMD) were applied to the schlieren data to identify flow structures. Comparisons were made between the two decomposition methods in the form of spatial correlations.

Few previous studies have explored how pediatric palliative care (PPC) influences hospital utilization. We evaluated this among PPC recipients in a single center.This is a retrospective cohort study of 109 patients ≥2 years of age who received PPC consultation at a large quaternary children's hospital from April 2009 to September 2010. We assessed frequencies of hospital admissions and emergency department (ED) visits, use of intensive interventions, and hospital costs. Generalized estimating equations were used to compare outcomes in the two years before and after PPC consultation, stratifying by whether a patient survived two or more years following PPC enrollment.Median age at PPC consultation was 13 years (interquartile range 6-18); 56.0% were male (n = 61), 69.7% white non-Hispanic (n = 76). Fifty-nine percent (n = 64) of patients died during the study period. Overall, annual hospital admission rates decreased from 4.6 (95% confidence interval [CI] 4.0-5.4) before PPC consultation to 3.7 (95% CI 3.4-4.4) after (p = 0.025). Annual ED visits decreased from 0.9 (95% CI 0.7-1.2) to 0.6 (95% CI 0.4-0.8) (p = 0.030). Survivors had significantly decreased hospital admissions [rate ratio (RR) 0.57 (95% CI 0.45-0.73), p 0.001] and ED visits [RR 0.33 (95% CI 0.20-0.54), p 0.001]. Decedents had increased intensive care unit use (p = 0.029) but decreased operations (p = 0.002); survivors experienced no change in these outcomes after PPC consultation. Hospital costs remained stable for all (p = 0.929).PPC involvement may contribute to decreased hospital and ED use, without escalating costs. These outcomes are most evident in survivors. Hence, PPC may have a measurable long-term impact on hospital use in seriously ill children.

Between 1980 and 2009 young adults in non-metro areas of the United States faced unfavorable structural changes in the global macroeconomy, spatial concentrations of poverty in non-metro areas, and shifts in family and household structure; however, little existing scholarship explores poverty specifically with reference to non-metro or rural young adults. We argue that young adulthood provides a strategic window in which to examine the intersection of these varied risk factors for economic hardship since young adults are especially vulnerable to poverty and are the most likely to experience changes in family or household structure. Using data from the Panel Study of Income Dynamics (PSID) this paper examines non-metro versus metro variation in the risk of falling into poverty between the ages 25–30. Time-varying covariates are utilized in order to accurately model changes in residential status and family structure over time. Results indicate that, while poverty is unevenly distributed across non-metro and metro areas, residence itself is not a significant predictor of poverty when family background and individual-level characteristics are taken into account. Family socioeconomic status, service-sector occupation, and living in a single-parent household with children are found to be the most significant risk factors for poverty in the transition to adulthood.

Time-resolved schlieren measurements were conducted on a supersonic rectangular multi-stream nozzle used for three-stream engines. The jet utilizes a single expansion ramp nozzle (SERN) configuration along with an bypass stream, operating at an ideally expanded bulk flow of M j , 1 = 1.6 and bypass stream of M j , 3 = 1.0 . Experiments were conducted with and without an aft deck to model airframe integration. Schlieren imaging was acquired up to 100 kHz in two different orientations. Proper orthogonal decomposition (POD) and dynamic mode decomposition (DMD) were applied to the schlieren data to identify flow structures. Comparisons were made between the two decomposition methods in the form of spatial correlations.

Purpose Hospital discharge for children with medical complexity (CMC) can be challenging for families. Home visits could potentially benefit CMC and their families after leaving the hospital. We assessed the utility of post-discharge home visits to identify and address health problems for recently hospitalized CMC. Design and Methods A prospective study of 36 CMC admitted to a children's hospital from 4/15/2015 to 4/14/2016 identified with a possible high risk of hospital readmission and offered a post-discharge home visit within 72 h of discharge. The visit was staffed by a hospital nurse familiar with the child's admission. The home visit goals were to reinforce education of the discharge plan, assess the child's home environment, and identify and address any problems or issues that emerged post-discharge. Results The children's median age was 6 years [interquartile range (IQR) 2–18]. The median distance from hospital to their home was 38 miles (IQR 8–78). All (n = 36) children had multiple chronic conditions; 89% (n = 32) were assisted with medical technology. The nurse identified and helped with a post-discharge problem during every (n = 36) visit. Of the 147 problems identified, 26.5% (n = 39) pertained to social/family issues (e.g., financial instability), 23.8% (n = 35) medications (e.g., wrong dose), 20.4% (n = 30) durable medical equipment (e.g., insufficient supply or faulty function), 20.4% (n = 30) child's home environment (e.g., unsafe sleeping arrangement), and 8.8% (n = 13) child's health (e.g., unresolved health problem). Conclusions Home visits helped identify and address post-discharge issues that occurred for discharged CMC. Practical Implications Hospitals should consider home visits when optimizing discharge care for CMC.

BACKGROUND. Minimizing emergency department (ED) use is a common goal of emerging population health initiatives. Our objective was to assess the impact of chronic conditions on children’s ED use. METHODS. Retrospective analysis of 1,850,027 ED visits in 2010 by 3,250,383 children ages 1-21 years continuously enrolled in Medicaid from 10 states included in the Truven Marketscan Medicaid Database. The main outcome was the annual ED visit rate not resulting in hospitalization per 1,000 enrollees. We compared rates by enrollees’ characteristics, including type and number of chronic conditions, and medical technology (e.g., gastrostomy, tracheostomy), using Poisson regression. To assess chronic conditions, we used AHRQ’s Chronic Condition Indicator system, assigning chronic conditions with ED visit rates ≥75(th) percentile as having the “highest” visit rates. RESULTS. The overall annual ED visit rate was 569 per 1000 enrollees. As the number of the children’s chronic conditions increased from 0 to ≥3, visit rates increased by 180% (from 376 to 1053 per 1000 enrollees, p

Objectives The aim of the study was to examine the prevalence of diagnosis and treatment for constipation among children receiving Medicaid and to compare healthcare utilization and spending for constipation among children based on number of complex chronic conditions (CCCs). Methods Retrospective cohort study of 4.9 million children ages 1 to 17 years enrolled in Medicaid from 2009 to 2011 in 10 states in the Truven Marketscan Database. Constipation was identified using International Classification of Disease, 9th revision codes for constipation (564.0x), intestinal impaction (560.3x), or encopresis (307.7). Outpatient and inpatient utilization and spending for constipation were assessed. CCC status was identified using validated methodology. Results A total of 267,188 children (5.4%) were diagnosed with constipation. Total constipation spending was $79.5 million. Outpatient constipation spending was $66.8 million (84.1%) during 406,814 visits, mean spending $120/visit. Among children with constipation, 1363 (0.5%) received inpatient treatment, accounting for $12.2 million (15.4%) of constipation spending, mean spending $7815/hospitalization. Of children hospitalized for constipation, 552 (40.5%) did not have an outpatient visit for constipation before admission. Approximately 6.8% of children in the study had ≥1 CCC; these children accounted for 33.5% of total constipation spending, 70.3% of inpatient constipation spending, and 19.8% of emergency department constipation spending. Constipation prevalence was 11.0% for children with 1 CCC, 16.6% with 2 CCCs, and 27.1% with ≥3 CCCs. Conclusions Although the majority of pediatric constipation treatment occurs in the outpatient setting, inpatient care accounts for a sizable percentage of spending. Children with CCCs have a higher prevalence of constipation and account for a disproportionate amount of constipation healthcare utilization and spending.

Aim To assess a total population of school‐age children with cerebral palsy (CP) for autism and attention‐deficit/hyperactivity disorder (ADHD) with a view to determining their prevalence and to relate findings to motor function, intellectual disability, and other associated impairments. Method Of 264 children, born between 1999 and 2006, from the CP register of western Sweden, 200 children (109 males, 91 females, median age at assessment 14y, range 7–18y) completed comprehensive screening and further neuropsychiatric clinical assessments. Results Ninety children (45%) were diagnosed with autism, ADHD, or both, 59 (30%) were diagnosed with autism, and 60 (30%) were diagnosed with ADHD. Intellectual disability was present in 51%. Two‐thirds had autism, ADHD, and/or intellectual disability. In regression models, autism was mainly predicted by intellectual disability (odds ratio [OR]=4.1) and ADHD (OR=3.2), and ADHD was predicted by intellectual disability (OR=2.3) and autism (OR=3.0). Autism was more common in children born preterm (OR=2.0). Gross motor function was not associated with autism. ADHD prevalence was low in children with severe motor impairment, possibly due to diagnostic limitations. Interpretation Autism and ADHD were common in this population of children with CP and were mainlyindependent of motor severity and CP type. The strongest predictor of autism/ADHD was intellectual disability. Assessment for autism and ADHD is warranted as part of the evaluation in CP. What this paper adds Forty‐five percent of the children with cerebral palsy also had autism, attention‐deficit/hyperactivity disorder (ADHD), or both.Autism and ADHD were predicted mainly by intellectual disability.Established diagnostic instruments worked well for all but the most disabled group of children., What this paper adds Forty‐five percent of the children with cerebral palsy also had autism, attention‐deficit/hyperactivity disorder (ADHD), or both.Autism and ADHD were predicted mainly by intellectual disability.Established diagnostic instruments worked well for all but the most disabled group of children. This article is commented on by Gecz and Berry on pages 247–248 of this issue.

Purpose African American patients (AA) have poorer outcomes than White patients (W) after heart and kidney transplant. Little is known about differential outcomes in lung transplantation (LTx). This study compares allograft injury and chronic allograft dysfunction (CLAD) in AA and W LTx. Methods The 469 LTx enrolled in two multicenter prospective cohort studies were categorized by self-reported race. Outcomes: Time from transplant to CLAD-free survival adjudicated by a committee using ISHLT standard definitions. Measure: Serial post-transplant plasma samples (n=2152) were assayed for %ddcfDNA by shotgun sequencing. Analyses : Baseline characteristics, post-transplant %ddcfDNA trends, tacrolimus trough levels and CLAD-free survival were compared between AA and W. Results LTx recipients were 79% W and 14 % AA. Donor-recipient race mismatch was more commonly observed for AA than for W (75.0% vs. 27.3%, p Conclusion AA LTx show higher allograft injury and poorer CLAD-free survival than W LTx despite equivalent tacrolimus blood levels. Studies to understand the mechanisms of allograft injury and poor outcomes in AA are warranted across all solid organ transplants.

Purpose African American (AA) patients are at risk for increased rates of rejection after heart transplantation (HT).We compared cell-free DNA (cf-DNA) levels after HT by recipient race. Methods This was a retrospective analysis of 96 HT recipients from the Genomic Research Alliance for Transplantation (GRAFT) Registry, of which 63 patients had cf-DNA values. Cf-DNA values were compared by race withan exponential decay model and Kaplan-Meier (KM) analysis was performed to compare time-to-first rejection. Results Compared to non-AA patients, AA recipients had a similar prevalence of diabetes and hypertension,proportion of males, and donor characteristics. AA recipients had higher cf-DNA values compared to non-AA recipients for the first five days following transplant (8.3% vs. 3.2% p=0.001 Table 1/figure 1). The stable state cf-DNA values decayed rapidly for AA patients and equalized to non-AA patients over the first 7 days (0.46% vs 0.45%, p=0.8 Table 1). Cellular rejection did not differ by race (HR [CI]=1.4 [0.62,3.2], p=0.4). However AA were at higher risk of antibody mediated rejection (HR [CI]=3.8 [1.3,10.9], p=0.01). Conclusion African American patients had increased cf-DNA values in the first week following heart transplant. This may be a marker of early injury contributing to increased rates of allograft rejection in AA patients. Further analysisadjusting for confounding variables and determining predictors of clinical outcomes will be included at the time of presentation once follow-up of the GRAFT registry is complete.

Purpose Donor specific antibodies(DSA) are a major risk factor for antibody mediated rejection (AMR) and allograft failure in lung transplant recipients (LTs). The trajectory from DSA to AMR and its association with allograft injury remains poorly defined. Thus, we detailed DSA and their trajectory to AMR. Methods 417 LTs from three prospective cohort studies were included. LTs had pre-transplant DSA testing, post transplantation surveillance and clinically indicated DSA testing. An AMR Working Group reviewed clinical data and used ISHLT criteria to adjudicate AMR. Allograft injury was assessed by %ddcfDNA in serially collected plasma samples via shotgun sequencing. Positive DSA: preformed or de novo if DSA was first detected before or after 14 days post-transplant. The interval from DSA detection to AMR or no AMR was computed. Preformed and de novo DSA was subcategorized in +AMR and -AMR subgroups based on whether or not DSA was associated with clinical AMR. %ddcfDNA levels were compared for these subgroups. Treated LTs prior to allograft dysfunction or AMR were removed. Results 185 subjects had positive HLA DSA (54.73%) detected at a median of 33 days post-transplantation. (IQR 9.0-236.8) DSA was predominantly de novo (n=119, 64.3%) than preformed (n=66, 35.7%), class II than Class I (76.44% vs. 20.24%, p Conclusion De novo and preformed DSA showed greater allograft injury than non-rejection DSA- timepoints. De novo DSA progresses to AMR at a higher rate than preformed DSA. Preformed or de novo DSA that progresses to AMR causes more lung injury than DSA with no AMR. %ddcfDNA could be used to identify and treat high-risk DSA.

The opportunistic pathogen Pseudomonas aeruginosa employs the type III secretion system (T3SS) and four effector proteins, ExoS, ExoT, ExoU, and ExoY, to disrupt cellular physiology and subvert the host’s innate immune response. Of the effector proteins delivered by the T3SS, ExoU is the most toxic. In P. aeruginosa infections, where the ExoU gene is expressed, disease severity is increased with poorer prognoses. This is considered to be due to the rapid and irreversible damage exerted by the phospholipase activity of ExoU, which cannot be halted before conventional antibiotics can successfully eliminate the pathogen. This review will discuss what is currently known about ExoU and explore its potential as a therapeutic target, highlighting some of the small molecule ExoU inhibitors that have been discovered from screening approaches.

Background In patients with acute respiratory distress syndrome (ARDS), low tidal volume ventilation has been associated with reduced mortality. Driving pressure (tidal volume normalized to respiratory system compliance) may be an even stronger predictor of ARDS survival than tidal volume. We sought to study whether these associations hold true in acute respiratory failure patients without ARDS. Methods This is a retrospectively cohort analysis of mechanically ventilated adult patients admitted to ICUs from 12 hospitals over 2 years. We used natural language processing of chest radiograph reports and data from the electronic medical record to identify patients who had ARDS. We used multivariable logistic regression and generalized linear models to estimate associations between tidal volume, driving pressure, and respiratory system compliance with adjusted 30-day mortality using covariates of Acute Physiology Score (APS), Charlson Comorbidity Index (CCI), age, and PaO2/FiO2 ratio. Results We studied 2641 patients; 48% had ARDS (n = 1273). Patients with ARDS had higher mean APS (25 vs. 23, p p = 0.6) scores. For non-ARDS patients, tidal volume was associated with increased adjusted mortality (OR 1.18 per 1 mL/kg PBW increase in tidal volume, CI 1.04 to 1.35, p = 0.010). We observed no association between driving pressure or respiratory compliance and mortality in patients without ARDS. In ARDS patients, both ΔP (OR1.1, CI 1.06–1.14, p p = 0.007) were associated with mortality. Conclusions In a large retrospective analysis of critically ill non-ARDS patients receiving mechanical ventilation, we found that tidal volume was associated with 30-day mortality, while driving pressure was not.

OBJECTIVES: In this study, we sought to establish priorities for a national research agenda for children and youth with special health care needs (CYSHCN) through a structured, multistakeholder, mixed-methods approach. METHODS: Using surveys, we solicited responses from >800 members of expert-nominated stakeholder organizations, including CYSHCN families, health care providers, researchers, and policymakers, to identify what research with or about CYSHCN they would like to see in a national research agenda. From 2835 individual free-text responses, 96 research topics were synthesized and combined. Using an adapted RAND/UCLA Appropriateness Method (a modified Delphi approach), an expert panel rated research topics across 3 domains: need and urgency, research impact, and family centeredness. Domains were rated on 9-point Likert scales. Panelist ratings were used to sort research topics into 4 relative-priority ranks. Rank 1 (highest priority) research topics had a median of ≥7 in all domains. RESULTS: The RAND/UCLA Appropriateness Method was used to prioritize CYSHCN research topics and depict their varying levels of stakeholder-perceived need and urgency, research impact, and family centeredness. In the 15 topics that achieved rank 1, social determinants of health (disparities and rurality), caregiving (family resilience and care at home), clinical-model refinement (effective model elements, labor divisions, telemedicine, and system integration), value (stakeholder-centered value outcomes, return on investment, and alternative payment models), and youth-adult transitions (planning, insurance, and community supports) were emphasized. CONCLUSIONS: High-priority research topics identified by CYSHCN experts and family leaders underscore CYSHCN research trends and guide important directions. This study is the first step toward an efficient and cohesive research blueprint to achieve highly-effective CYSHCN health systems.

Globally recognised botulinum neurotoxin is known primarily for its aesthetic effects. It seems to attract a negative media slant disproportionate to its wealth of clinically documented attributes in fields as disparate as paediatrics, urology, ophthalmology and, most recently, neurology for its treatment of migraine. This chapter introduces some of its important facts, fundaments of physiology and basic pharmacology.

A growing body of evidence points to a considerable and heterogeneous genetic aetiology of cerebral palsy (CP). To identify recurrently variant CP genes, we designed a custom gene panel of 112 candidate genes. We tested 366 clinically unselected singleton cases with CP, including 271 cases not previously examined using next-generation sequencing technologies. Overall, 5.2% of the naïve cases (14/271) harboured a genetic variant of clinical significance in a known disease gene, with a further 4.8% of individuals (13/271) having a variant in a candidate gene classified as intolerant to variation. In the aggregate cohort of individuals from this study and our previous genomic investigations, six recurrently hit genes contributed at least 4% of disease burden to CP: COL4A1, TUBA1A, AGAP1, L1CAM, MAOB and KIF1A. Significance of Rare VAriants (SORVA) burden analysis identified four genes with a genome-wide significant burden of variants, AGAP1, ERLIN1, ZDHHC9 and PROC, of which we functionally assessed AGAP1 using a zebrafish model. Our investigations reinforce that CP is a heterogeneous neurodevelopmental disorder with known as well as novel genetic determinants.

Sulfotransferases (STs) catalyse the transfer of a sulfonyl group (‘sulfation’) from the enzyme co-factor 3ʹ-phosphoadenosine 5ʹ-phosphosulfate (PAPS) to a variety of biomolecules. Tyrosine sulfation of proteins and carbohydrate sulfation play a crucial role in many protein-protein interactions and cell signalling pathways in the extracellular matrix. This is catalysed by several membrane-bound STs, including tyrosylprotein sulfotransferase 1 (TPST1) and heparan sulfate 2-O-sulfotransferase (HS2ST1). Recently, involvement of these enzymes and their post-translational modifications in a growing number of disease areas has been reported, including inflammation, cancer and Alzheimer’s disease. Despite their growing importance, the development of small molecules to probe the biological effect of TPST and carbohydrate ST inhibition remains in its infancy. We have used a structure-based approach and molecular docking to design a library of adenosine 3',5'-diphosphate (PAP) and PAPS mimetics based upon 2'-deoxyadenosine and using 2'-deoxy-PAP as a benchmark. The use of allyl groups as masked methyl esters was exploited in the synthesis of PAP-mimetics, and click chemistry was employed for the divergent synthesis of a series of PAPS-mimetics. A suite of in vitro assays employing TPST1 and HS2ST, and a kinase counter screen, were used to evaluate inhibitory parameters and relative specificity for the STs.

A new porous and flexible metal–organic framework (MOF) has been synthesized from the flexible asymmetric linker N-(4-carboxyphenyl)succinamate (CSA) and heptanuclear zinc oxo-clusters of formula [Zn7O2(carboxylate)10DMF2] involving two coordinated terminal DMF ligands. The structural response of this MOF to the removal or exchange of its guest molecules has been probed using a combination of experimental and computational approaches. The topology of the material, involving double linker connections in the a and b directions and single linker connections along the c axis, is shown to be key in the material’s anisotropic response. The a and b directions remain locked during guest removal, whereas the c axis linker undergoes large changes significantly reducing the material’s void space. The changes to the c axis linker involve a combination of a hinge motion on the linker’s rigid side and conformational rearrangements on its flexible end, which were probed in detail during this process despite the presence of crystallographic disorder along this axis, which prevented accurate characterization by experimental methods alone. Although inactive during guest removal, the flexible ends of the a and b axis linkers are observed to play a prominent role during DMF to DMSO solvent exchange, facilitating the exchange reaction arising in the cluster., The synthesis and flexibility of a new zinc-carboxylate MOF (ZnCSA) is reported via a combination of crystallographic and computational approaches. The anisotropic structural response exhibited during exchange or removal of the guest species in the pore reveals that the behavior is linked to both the framework’s topology and the nature of the asymmetric flexible linker used in its construction.

Transfer hydrogenation of acetophenone from formic acid/triethylamine mixtures catalysed by the Ikariya–Noyori complex [(mesitylene)RuCl(R,R)-(TsDPEN)] has been investigated using simultaneous high-resolution FlowNMR and FlowUV-Vis spectroscopies coupled with on-line sampling head-space mass spectrometry and chiral high-performance liquid chromatography using an integrated, fully automated recirculating flow setup. In line with previous observations, the combined results show a gradual switch from formic acid dehydrogenation to hydrogen transfer mediated by the same Ru-hydride complex, and point to a Ru-formate species as the major catalyst intermediate. Hydrogen bonding in the formic acid/triethylamine mixture emerges as a sensitive 1H NMR probe for the transfer hydrogenation activity of the system and can be used to locate optimum reaction conditions.

Among older adults who have recently sustained a fracture, there is substantial adoption of mobile technology. Furthermore, health and eHealth literacy level reported by participants supports the development of interactive eHealth interventions toward fostering better patient engagement in skeletal health management.Electronic health resources are increasingly used in the self-management of medical conditions. We aimed to identify the current level of technology adoption, health, and eHealth literacy among older adults with a recent fracture, to determine if the use of electronic interventions would be feasible and acceptable in this population.Adults ≥ 50 years with recent fractures were invited to complete a self-administered survey composed of 21 questions, including an 8-item perceived eHealth literacy scale.A total of 401 participants completed the survey (women, 64%; ≥ 65 years, 59%; university education, 32%). Most participants reported no difficulty in reading printed health material (67%) and felt confident in filling out medical forms (65%). Younger age and higher levels of education were associated with higher health literacy. Most respondents (81%) owned at least one mobile device (smartphone, 49%; tablet, 45%). eHEALS scores were similar among men (29, IQR 24-32) and women (29, IQR 25-33), and between younger age group categories (50-64 years, 30; IQR 26-33; and 65-74 years, 29; IQR 25-32), but lower in the oldest age group (≥ 75 years, 24; IQR 21-29; p 0.05). Compared with the youngest group, those ≥ 75 years had higher odds of an eHEALS 26 (odds ratio, 4.2; 95% confidence interval 2.0-8.9) after adjusting for sex and education level.There is significant adoption of mobile technology among older adults. Health and eHealth literacy reported by this study population supports the development of interactive eHealth interventions toward fostering better patient engagement in skeletal health management.

[Image: see text] A series of 2-pyrazolyl quinolones has been designed and synthesized in 5–7 steps to optimize for both in vitro antimalarial potency and various in vitro drug metabolism and pharmacokinetics (DMPK) features. The most potent compounds display no cross-resistance with multidrug resistant parasite strains (W2) compared to drug sensitive strains (3D7), with IC(50) (concentration of drug required to achieve half maximal growth suppression) values in the range of 15–33 nM. Furthermore, members of the series retain moderate activity against the atovaquone-resistant parasite isolate (TM90C2B). The described 2-pyrazoyl series displays improved DMPK properties, including improved aqueous solubility compared to previously reported quinolone series and acceptable safety margin through in vitro cytotoxicity assessment. The 2-pyrazolyl quinolones are believed to bind to the ubiquinone-reducing Q(i) site of the parasite bc(1) complex, which is supported by crystallographic studies of bovine cytochrome bc(1) complex.

This cross-sectional study describes and evaluates the effectiveness of a refined coding system for distinguishing children with high-intensity neurological impairment from those with lower-intensity neurological conditions.

Introduction: Children dependent on Long-Term Ventilation (LTV) need the planning, provision and monitoring of complex services generally provided at home by professionals belonging to different settings. The collaboration among professionals improves the efficiency and the continuity of care especially when treating children with complex needs. In this paper patterns of collaboration have been analysed across the 30 EU/EEA countries of the MOCHA project using Unified Modelling Language (UML). Methods: The level of collaboration was defined analysing the answers provided by local Country Agents (CAs) in a questionnaire adapted from standards of care for children with complex care needs. Particular attention was given to: management of the personalized plan, organization of the transition from the hospital to the child’s home, provision of general and preventive services and access to specialized services. Responses of the CAs were summarized using UML to capture: the professionals involved in each activity and their configuration in a multidisciplinary team (MDT) (Use case diagram); the flow of activities performed and the messages exchanged by the different actors/teams taking into account the location and the timeline of each activity (Activity diagram). Results: Twenty-three CAs responded to the questionnaire. Within a high variety of patterns of collaboration, primary care professionals are involved in the majority of countries providing general services, while specialists continue to be a reference point also when the child is discharged at home. Moreover, the presence of a social worker within a MDT indicates a trend of including the social component for the children and their families. The adoption of a personalized plan is one of the optimum features in the treatment of complex care, in particular considering that it should include the procedures to access care in case of medical crisis. Discussion: This approach provides important indications on the efficiency in performing and organizing health-related activities. The association of identified activities with data, such as number and cost of professionals, health outcomes and waiting times, could provide an in-depth analysis indicating best practices in the provision of care. Conclusions: The adoption of a business process analysis allowed us to identify different patterns of collaboration that may be distributed along a continuum of integration. Moreover, the use UML made it possible to represent the different organizational features in place in the MOCHA countries to manage children with LTV in a comparable way. Lessons learned: The adoption of a business process analysis contributed to the analysis of the integration of care among the primary, secondary and social level. It captured the patterns of care delivery in the highly dynamic, complex and multi-disciplinary nature of healthcare processes. Limitations: The description of the care process is provided by a single CA that describes the actual situation in his/her country. Further analysis can help to capture regional variations, differences in terms of services provided in urban and rural areas or changes depending on the severity. Suggestions for future research: Compare the results obtained for LTV with other complex care needs analysed in MOCHA such as, traumatic brain injury, intractable epilepsy.

BACKGROUND The American Society of Anesthesiologists physical status (ASA-PS) classification system is used worldwide to classify patients based on comorbid conditions before general anesthesia. Despite its popularity, the ASA-PS classification system has been shown to have poor interrater reliability due to its subjective definitions, especially when applied to the pediatric population. We hypothesized that the clarification of ASA-PS definitions to better reflect pediatric conditions would improve the accuracy of ASA-PS applied to this population. METHODS A stratified, randomized sample of 120 pediatric surgical cases was collected from a tertiary-care pediatric hospital. A team of senior anesthesiologists reclassified ASA-PS within this patient sample using the suggested pediatric-specific ASA-PS definitions. Interrater reliability was measured using intraclass correlation (ICC) and Fleiss κ statistic. In addition, a qualitative study component using small focus groups of senior anesthesiologists identified areas of ambiguity within the ASA-PS system. RESULTS Among the 90 reclassifications within each ASA-PS group, 42.2% (n = 38) of ASA-PS I were upgraded to ASA-PS II, and 36.7% (n = 33) of ASA-PS II were upgraded to ASA-PS III. In addition, 28.9% (n = 26) of ASA-PS III were upgraded to ASA-PS IV, and 24.4% (n = 22) of ASA-PS IV were downgraded to III. ICC across the reclassified ASA-PS categories was 0.77 (95% confidence interval [CI], 0.71-0.83; P < .001) demonstrating strong overall agreement. Fleiss κ statistic was lowest in ASA-PS II and III patients (κ = 0.41 and κ = 0.30, respectively) indicating lower agreement beyond chance within these subgroups. Focus groups revealed common themes such as active sequelae of disease, active versus well-controlled presence of comorbidities, and the possible inclusion of functional limitations as important considerations. CONCLUSIONS The ASA-PS classification system has several benefits including ease-of-use, simplicity, and flexibility. However, revising the ASA-PS system to provide better guidance for pediatric patients could be valuable. While this study demonstrates good interrater reliability with the included ASA-PS pediatric definitions, further work is needed to clarify accurate assignment of ASA-PS within the midrange of the scale (ASA-PS II and III) and explore its implementation in other institutions.

Cerebral palsy (CP) is the most frequent movement disorder of childhood affecting 1 in 500 live births in developed countries. We previously identified likely pathogenic de novo or inherited single nucleotide variants (SNV) in 14% (14/98) of trios by exome sequencing and a further 5% (9/182) from evidence of outlier gene expression using RNA sequencing. Here, we detected copy number variants (CNV) from exomes of 186 unrelated individuals with CP (including our original 98 trios) using the CoNIFER algorithm. CNV were validated with Illumina 850 K SNP arrays and compared with RNA-Seq outlier gene expression analysis from lymphoblastoid cell lines (LCL). Gene expression was highly correlated with gene dosage effect. We resolved an additional 3.7% (7/186) of this cohort with pathogenic or likely pathogenic CNV while a further 7.7% (14/186) had CNV of uncertain significance. We identified recurrent genomic rearrangements previously associated with CP due to 2p25.3 deletion, 22q11.2 deletions and duplications and Xp monosomy. We also discovered a deletion of a single gene, PDCD6IP, and performed additional zebrafish model studies to support its single allele loss in CP aetiology. Combined SNV and CNV analysis revealed pathogenic and likely pathogenic variants in 22.7% of unselected individuals with CP., Neurodevelopment: Copy number variants underlie cases of cerebral palsy At least 23% of cerebral palsy has a genetic basis, due to either point mutations or large chromosomal abnormalities. Using sequence data from 186 unrelated patients, a team led by Mark Corbett from the University of Adelaide, Australia, searched the protein-coding portion of the genome for disease-causing duplications or deletions, types of mutations collectively known as copy number variants, or CNVs. The researchers singled out 7 pathogenic CNVs that they corroborated through microarray profiling and gene expression analyses. Using a zebrafish model, the researchers identified a new gene “PDCD6IP” associated with cerebral palsy and epilepsy. They also flagged another 14 CNVs that were likely pathogenic but could not be confirmed. The work highlights the need for comprehensive genetic testing to be considered early in the diagnosis of cerebral palsy.

A new porous and flexible metal-organic framework (MOF) has been synthesised from the flexible asymmetric linker N-(4-Carboxyphenyl)succinamate (CSA) and heptanuclear zinc oxo-clusters of formula [Zn7O2(Carboxylate)10DMF2] involving two coordinated terminal DMF ligands. The structural response of this MOF to the removal or exchange of its guest molecules has been probed using a combination of experimental and computational approaches. The topology of the material, involving double linker connections in the a and b directions and single linker connections along the c axis, is shown to be key in the materials anisotropic response. The a and b directions remain locked during guest removal, while the c axis linker undergoes large changes significantly reducing the material’s void space. The changes to the c axis linker involve a combination of a hinge motion on the linker’s rigid side and conformational rearrangements on its flexible end, which were probed in detail during this process despite the presence of crystallographic disorder along this axis which prevented accurate characterisation by experimental methods alone. While inactive during guest removal, the flexible ends of the a and b axis linkers are observed to play a prominent role during DMF to DMSO solvent exchange, facilitating the exchange reaction arising in the cluster.

OBJECTIVE: To examine how characteristics vary between children with any mental health (MH) diagnosis who have typical spending and the highest spending; to identify independent predictors of highest spending; and to examine drivers of spending groups. METHODS: This retrospective analysis utilized 2016 Medicaid claims from 11 states and included 775,945 children ages 3–17 years with any MH diagnosis and at least 11 months of continuous coverage. We compared demographic characteristics and Medicaid expenditures based on total healthcare spending: the top 1% (highest-spending) and remaining 99% (typical-spending). We used chi-squared tests to compare the 2 groups and adjusted logistic regression to identify independent predictors of being in the top 1% highest-spending group. RESULTS: Children with MH conditions accounted for 55% of Medicaid spending among 3- to 17-year-olds. Patients in the highest-spending group were more likely to be older, have multiple MH conditions, and have complex chronic physical health conditions (p

OBJECTIVES: To examine the incidence, mortality, and health care use related to neonatal herpes simplex virus (HSV) infection. METHODS: A retrospective longitudinal cohort study using a multistate Medicaid claims database. We identified neonates hospitalized with HSV infection from 2009 to 2015 by using discharge diagnosis codes and managed them for 6 months after discharge. Incidence rates were corrected for the imperfect sensitivity and specificity of thediagnosis codes for identifying HSV infection. RESULTS: Of 2 107 124 births from 2009 to 2015, 900 neonates were identified with HSV infection, with a corrected incidence rate of 4.5 (95% confidence interval [CI]: 4.2–4.8) per 10 000 births. The yearly disease incidence increased by 56%, from 3.4 (95% CI: 2.8–4.2) per 10 000 births (or 1 in 2941 births) in 2009 to 5.3 (95% CI: 4.6–6.1) per 10 000 births (or 1 in 1886 births) in 2015 (P < .001). Of the 900 neonates with HSV infection, 54 (6.0% [95% CI: 4.4%–7.6%]) died during the index hospitalization; there was no increase in the yearly mortality rate. Of the 692 (81.2%) infants with follow-up data, 316 (45.7%) had an emergency department visit, and 112 (16.2%) had a hospital readmission. Total payments at 6 months amounted to $60 620 431, a median of $87 602 per case of neonatal HSV infection. CONCLUSIONS: We observed an increase in neonatal HSV infection incidence over a recent 7-year period in a Medicaid population. Associated health care use and payments were substantial. Public health interventions targeting disease prevention and early diagnosis are needed.

BACKGROUND AND OBJECTIVES:Although potentially dangerous, little is known about outpatient opioid exposure (OE) in children and youth with special health care needs (CYSHCN). We assessed the prevalence and types of OE and the diagnoses and health care encounters proximal to OE in CYSHCN.METHODS:This is a retrospective cohort study of 2 597 987 CYSHCN aged 0-to-18 years from 11 states, continuously enrolled in Medicaid in 2016, with ≥1 chronic condition. OE included any filled prescription (single or multiple) for opioids. Health care encounters were assessed within 7 days before and 7 and 30 days after OE.RESULTS:Among CYSHCN, 7.4% had OE. CYSHCN with OE versus without OE were older (ages 10–18 years: 69.4% vs 47.7%), had more chronic conditions (≥3 conditions: 49.1% vs 30.6%), and had more polypharmacy (≥5 other medication classes: 54.7% vs 31.2%), P < .001 for all. Most (76.7%) OEs were single fills with a median duration of 4 days (interquartile range: 3–6). The most common OEs were acetaminophen-hydrocodone (47.5%), acetaminophen-codeine (21.5%), and oxycodone (9.5%). Emergency department visits preceded 28.8% of OEs, followed by outpatient surgery (28.8%) and outpatient specialty care (19.1%). Most OEs were preceded by a diagnosis of infection (25.9%) or injury (22.3%). Only 35.1% and 62.2% of OEs were associated with follow-up visits within 7 and 30 days, respectively.CONCLUSIONS:OE in CYSHCN is common, especially with multiple chronic conditions and polypharmacy. In subsequent studies, researchers should examine the appropriateness of opioid prescribing, particularly in emergency departments, as well as assess for drug interactions with chronic medications and reasons for insufficient follow-up.

Objectives To convey advice from families whose children recently underwent spinal fusion to families whose children are under consideration for initial spinal fusion for neuromuscular scoliosis and to providers who counsel families on this decision. Study design We interviewed 18 families of children who underwent spinal fusion between August 2017 and January 2019 at a freestanding children's hospital. We conducted phone interviews a median of 65 (IQR 51-77) days after surgery. We audio recorded, transcribed, and coded (line-by-line) interviews using grounded theory by 2 independent reviewers, and discussed among investigators to induce themes associated with surgical decision making and preparation. Results Six themes emerged about decision making and preparation for spinal fusion: (1) simplify risks and benefits; it is easy to get lost in the details; (2) families prolonging the decision whether or not to pursue spinal fusion surgery may not benefit the child; (3) anticipate anxiety and fear when making a decision about spinal fusion; (4) realize that your child might experience a large amount of pain; (5) anticipate a long recovery and healing process after spinal fusion; and (6) be engaged and advocate for your child throughout the perioperative spinal fusion process. Conclusions Parents of children who had recently undergone spinal fusion had strong perceptions about what information to convey to families considering surgery, which may improve communication between future parents and physicians. Further investigation is needed to assess how best to incorporate the wisdom and experiences of parent peers into shared decision making and preparation for spinal fusion in children with neuromuscular scoliosis.

Background Caregivers are essential for assisting people with disabilities to fully participate in their communities. Past research has primarily focused on family caregivers in the U.S. providing care to older adults rather than children and adults with disabilities. Objective This paper examines the demographic and health characteristics of caregivers of children and adults with disabilities across the lifespan using data from the 2017 Health Information National Trends Survey (HINTS). Methods Chi square, t-test, linear and logistic regression analyses show differences between caregivers and non-caregivers related to gender, age, employment, and specific health outcomes. Results Of 3285 respondents, 18% self-identified as caregivers of children or adults with disabilities (n = 546). Almost one-third of all caregivers reported being diagnosed with depression or an anxiety disorder as compared to one-fifth of non-caregivers. Psychological distress was associated with an increased risk for a diagnosis of depression/anxiety. We also found that distress decreased with age when controlling for other factors. Conclusion This paper increases knowledge of a growing segment of family caregivers providing care for members with disabilities across the lifespan. Research and policy needs are discussed.