Incidence of pediatric narcolepsy diagnosis and management: evidence from claims data.

STUDY OBJECTIVES: To characterize the incidence of pediatric narcolepsy diagnosis, subsequent care, and potential sociodemographic disparities in a large US claims database. METHODS: Merative MarketScan insurance claims (n=12,394,902) were used to identify youth (6-17 years) newly diagnosed with narcolepsy (ICD-10 codes). Narcolepsy diagnosis and care 1-year post-diagnosis included polysomnography (PSG) with Multiple Sleep Latency Test (MSLT), pharmacological care, and clinical visits. Potential disparities were examined by insurance coverage and child race and ethnicity (Medicaid-insured only). RESULTS: The incidence of narcolepsy diagnosis was 10:100,000, primarily type 2 (69.9%). Most diagnoses occurred in adolescents with no sex differences, but higher rates in Black versus White youth with Medicaid. Two-thirds had a prior sleep disorder diagnosis and 21-36% had other co-occurring diagnoses. Only half (46.6%) had a PSG with MSLT (± 1-year post-diagnosis). Specialty care (18.9% pulmonary, 26.9% neurology) and behavioral health visits were rare (34.4%), although half were prescribed stimulant medications (51.0%). Medicaid-insured were 86% less likely than commercially insured youth to have any clinical care and 33% less likely to have a PSG with MSLT. CONCLUSIONS: Narcolepsy diagnoses occurred in 0.01% of youth, primarily during adolescence, and at higher rates for Black versus White children with Medicaid. Only half had evidence of a diagnostically required PSG with MSLT, underscoring potential misdiagnosis. Many patients had co-occurring conditions, but specialty and behavioral health care were limited. Results suggest misdiagnosis, underdiagnosis, and limited narcolepsy treatment, as well as possible insurance-related disparities. Results highlight the need to identify determinants of evidence-based pediatric narcolepsy diagnosis and management.

Association of the social disorganization index with time to first septic shock event in children with acute myeloid leukemia.

BACKGROUND: Pediatric acute myeloid leukemia (AML) chemotherapy increases the risk of life-threatening complications, including septic shock (SS). An area-based measure of social determinants of health, the social disorganization index (SDI), was hypothesized to be associated with SS and SS-associated death (SS-death). METHODS: Children treated for de novo AML on two Children's Oncology Group trials at institutions contributing to the Pediatric Health Information System (PHIS) database were included. The SDI was calculated via residential zip code data from the US Census Bureau. SS was identified via PHIS resource utilization codes. SS-death was defined as death within 2 weeks of an antecedent SS event. Patients were followed from 7 days after the start of chemotherapy until the first of end of front-line therapy, death, relapse, or removal from study. Multivariable-adjusted Cox regressions estimated hazard ratios (HRs) comparing time to first SS by SDI group. RESULTS: The assembled cohort included 700 patients, with 207 (29.6%) sustaining at least one SS event. There were 233 (33%) in the SDI-5 group (highest disorganization). Adjusted time to incident SS did not statistically significantly differ by SDI (reference, SDI-1; SDI-2: HR, 0.84 [95% confidence interval (CI), 0.51-1.41]; SDI-3: HR, 0.70 [95% CI, 0.42-1.16]; SDI-4: HR, 0.97 [95% CI, 0.61-1.53]; SDI-5: HR, 0.72 [95% CI, 0.45-1.14]). Nine patients (4.4%) with SS experienced SS-death; seven of these patients (78%) were in SDI-4 or SDI-5. CONCLUSIONS: In a large, nationally representative cohort of trial-enrolled pediatric patients with AML, there was no significant association between the SDI and time to SS.

Differences in Cost of Care by Palliation Strategy for Infants With Ductal-Dependent Pulmonary Blood Flow.

BACKGROUND: In infants with ductal-dependent pulmonary blood flow, initial palliation with patent ductus arteriosus (PDA) stent or modified Blalock-Taussig (BT) shunt have comparable mortality but discrepant length of stay, procedural complication rates and reintervention burdens, which may influence cost. The relative economic impact of these palliation strategies is unknown. METHODS AND RESULTS: Retrospective study of infants with ductal-dependent pulmonary blood flow palliated with PDA stent (n=104) or BT shunt (n=251) from 2008 to 2015 at 4 centers of the Congenital Catheterization Research Collaborative. Inflation-adjusted inpatient hospital costs were calculated for first year of life using Pediatric Health Information System data. Costs derived from outpatient catheterizations not in Pediatric Health Information System were imputed. Costs were compared using propensity score-adjusted multivariable models, to account for baseline differences between groups. After propensity score adjustment, first year of life costs were significantly lower in PDA stent ($215 825 [190 644-244 333]) than BT shunt ($249 855 [230 693-270 609]) patients ( P=0.05). After addition of imputed costs, first year of life costs were not significantly different between PDA stent ($226 403 [200 274-255 941]) and BT shunt ($252 072 [232 955-272 759]) groups ( P=0.15). Patient characteristics associated with higher costs included: younger gestational age, genetic syndrome, noncardiac diagnoses, procedural complications, extracorporeal membrane oxygenation, duration of ventilation, intensive care unit and hospital length of stay and reintervention ( P≤0.02 for all). CONCLUSIONS: In this first multicenter comparative cost study of PDA stent or BT shunt as palliation for infants with ductal-dependent pulmonary blood flow, adjusted for baseline differences, PDA stent was associated with lower to equivalent costs over the first year of life. Combined with previous evidence suggesting clinical noninferiority, these findings suggest that PDA stent provides competitive health care value.

Association Between Variation in Preoperative Care Before Arterial Switch Operation and Outcomes in Patients With Transposition of the Great Arteries.

BACKGROUND: The arterial switch operation (ASO) is the gold standard operative correction of neonates with transposition of the great arteries and intact ventricular septum, with excellent operative survival. The associations between patient and surgeon characteristics and outcomes are well understood, but the associations between variation in preoperative care and outcomes are less well studied. METHODS: A multicenter retrospective cohort study of infants undergoing neonatal ASO between January 2010 and September 2015 at hospitals contributing data to the Pediatric Health Information Systems database was performed. The association between preoperative care (timing of ASO, preoperative use of balloon atrial septostomy, prostaglandin infusion, mechanical ventilation, and vasoactive agents) and operative outcomes (mortality, length of stay, and cost) was studied with multivariable mixed-effects models. RESULTS: Over the study period, 2159 neonates at 40 hospitals were evaluated. Perioperative mortality was 2.8%. Between hospitals, the use of adjuvant therapies and timing of ASO varied broadly. At the subject level, older age at ASO was associated with higher mortality risk (age >6 days: odds ratio, 1.90; 95% CI, 1.11-3.26; P=0.02), cost, and length of stay. Receipt of a balloon atrial septostomy was associated with lower mortality risk (odds ratio, 0.32; 95% CI, 0.17-0.59; P<0.001), cost, and length of stay. Later hospital median age at ASO was associated with higher odds of mortality (odds ratio, 1.15 per day; 95% CI, 1.02-1.29; P=0.03), longer length of stay ( P<0.004), and higher cost ( P<0.001). Other hospital factors were not independently associated with the outcomes of interest. CONCLUSIONS: There was significant variation in preoperative care between hospitals. Some potentially modifiable aspects of perioperative care (timing of ASO and septostomy) were significantly associated with mortality, length of stay, and cost. Further research on the perioperative care of neonates is necessary to determine whether modifying practice on the basis of the observed associations translates into improved outcomes.

Inaccuracies in the 2020 Census Enumeration Could Create a Misalignment Between States' Needs.

As the most accurate reflection of the United States population, the US decennial census is vital to health policymakers and others at all levels of government. Competing priorities related to cost containment and the introduction of new reforms raise concerns about the resources available to the US Census Bureau to conduct an accurate population enumeration in 2020. We examined the state of the Census Bureau's preparations for the 2020 Census and how inaccuracies in the coming census enumeration could influence public health and health equity in the coming decade. The results of the 2020 Census will be used to allocate trillions of dollars in federal funding to states, including support for programs vital to public health such as Medicaid and the Special Supplemental Nutrition Program for Women, Infants, and Children. Inaccuracies in the census enumeration could create a misalignment between states' needs and allocation of federal resources. Also, a census miscount of the population could create challenges for public health surveillance and research activities that inform public health policies and interventions.

Family Characteristics Associated With Child Maltreatment Across the Deployment Cycle of U.S. Army Soldiers.

OBJECTIVE: Soldier deployment can create a stressful environment for U.S. Army families with young children. Prior research has identified elevated rates of child maltreatment in the 6 months immediately following a soldier's return home from deployment. In this study, we longitudinally examine how other child- and family-level characteristics influence the relationship of deployment to risk for maltreatment of dependent children of U.S. Army soldiers. METHODS: We conducted a person-time analysis of substantiated reports and medical diagnoses of maltreatment among the 73,404 children of 56,087 U.S. Army soldiers with a single deployment between 2001 and 2007. Cox proportional hazard models estimated hazard rates of maltreatment across deployment periods and simultaneously considered main effects for other child- and family-level characteristics across periods. RESULTS: In adjusted models, maltreatment hazard was highest in the 6 months following deployment (hazard ratio [HR] = 1.63, p < 0.001). Children born prematurely or with early special needs independently had an increased risk for maltreatment across all periods (HR = 2.02, p < 0.001), as well as those children whose soldier-parent had been previously diagnosed with a mental illness (HR = 1.68, p < 0.001). In models testing for effect modification, during the 6 months before deployment, children of female soldiers (HR = 2.22, p = 0.006) as well as children of soldiers with a mental health diagnosis (HR = 2.78, p = 0.001) were more likely to experience maltreatment, exceeding the risk at all other periods. CONCLUSIONS: Infants and children are at increased risk for maltreatment in the 6 months following a parent's deployment, even after accounting for other known family- and child-level risk factors. However, the risk does not appear to be the same for all soldiers and their families in relation to deployment, particularly for female soldiers and those who had previously diagnosed mental health issues, for whom the risk appears most elevated before deployment. Accounting for the unique needs of high-risk families at different stages of a soldier's deployment cycle may allow the U.S. Army to better direct resources that prevent and address child maltreatment.

Under-ascertainment from healthcare settings of child abuse events among children of soldiers by the U.S. Army Family Advocacy Program.

In cases of maltreatment involving children of U.S. Army service members, the U.S. Army Family Advocacy Program (FAP) is responsible for providing services to families and ensuring child safety. The percentage of cases of maltreatment that are known to FAP, however, is uncertain. Thus, the objective of this retrospective study was to estimate the percentage of U.S. Army dependent children with child maltreatment as diagnosed by a military or civilian medical provider who had a substantiated report with FAP from 2004 to 2007. Medical claims data were used to identify 0-17year old child dependents of soldiers who received a medical diagnosis of child maltreatment. Linkage rates of maltreatment medical diagnoses with corresponding substantiated FAP reports were calculated. Bivariate and multivariable analyses examined the association of child, maltreatment episode, and soldier characteristics with linkage to substantiated FAP reports. Across 5945 medically diagnosed maltreatment episodes, 20.3% had a substantiated FAP report. Adjusting for covariates, the predicted probability of linkage to a substantiated FAP report was higher for physical abuse than for sexual abuse, 25.8%, 95% CI (23.4, 28.3) versus 14.5%, 95% CI (11.2, 17.9). Episodes in which early care was provided at civilian treatment facilities were less likely to have a FAP report than those treated at military facilities, 9.8%, 95% CI (7.3, 12.2) versus 23.6%, 95% CI (20.8, 26.4). The observed low rates of linkage of medically diagnosed child maltreatment to substantiated FAP reports may signal the need for further regulation of FAP reporting requirements, particularly for children treated at civilian facilities.

Use of social media across US hospitals: descriptive analysis of adoption and utilization.

BACKGROUND: Use of social media has become widespread across the United States. Although businesses have invested in social media to engage consumers and promote products, less is known about the extent to which hospitals are using social media to interact with patients and promote health. OBJECTIVE: The aim was to investigate the relationship between hospital social media extent of adoption and utilization relative to hospital characteristics. METHODS: We conducted a cross-sectional review of hospital-related activity on 4 social media platforms: Facebook, Twitter, Yelp, and Foursquare. All US hospitals were included that reported complete data for the Centers for Medicare and Medicaid Services Hospital Consumer Assessment of Healthcare Providers and Systems survey and the American Hospital Association Annual Survey. We reviewed hospital social media webpages to determine the extent of adoption relative to hospital characteristics, including geographic region, urban designation, bed size, ownership type, and teaching status. Social media utilization was estimated from user activity specific to each social media platform, including number of Facebook likes, Twitter followers, Foursquare check-ins, and Yelp reviews. RESULTS: Adoption of social media varied across hospitals with 94.41% (3351/3371) having a Facebook page and 50.82% (1713/3371) having a Twitter account. A majority of hospitals had a Yelp page (99.14%, 3342/3371) and almost all hospitals had check-ins on Foursquare (99.41%, 3351/3371). Large, urban, private nonprofit, and teaching hospitals were more likely to have higher utilization of these accounts. CONCLUSIONS: Although most hospitals adopted at least one social media platform, utilization of social media varied according to several hospital characteristics. This preliminary investigation of social media adoption and utilization among US hospitals provides the framework for future studies investigating the effect of social media on patient outcomes, including links between social media use and the quality of hospital care and services.