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Burkholderia cepacia complex (BCC) has been increasingly implicated in local and multistate outbreaks in both adult and pediatric healthcare settings. However, a lack of source identification may be common for BCC outbreak investigations. We describe, in detail, the investigation of an outbreak of BCC (B. contaminans) among pediatric patients at a large quaternary-care children’s hospital and our system-level changes and outcomes.

Objective To determine if differences in patient characteristics, treatments, and outcomes exist between children with sepsis who arrive by emergency medical services (EMS) versus their own mode of transport (self-transport). Methods Retrospective cohort study of patients who presented to the Emergency Department (ED) of two large children's hospitals and treated for sepsis from November 2013 to June 2017. Presentation, ED treatment, and outcomes, primarily time to first bolus and first parental antibiotic, were compared between those transported via EMS versus patients who were self-transported. Results Of the 1813 children treated in the ED for sepsis, 1452 were self-transported and 361 were transported via EMS. The EMS group were more frequently male, of black race, and publicly insured than the self-transport group. The EMS group was more likely to have a critical triage category, receive initial care in the resuscitation suite (51.9 vs. 22%), have hypotension at ED presentation (14.4 vs. 5.4%), lactate >2.0 mmol/L (60.6 vs. 40.8%), vasoactive agents initiated in the ED (8.9 vs. 4.9%), and to be intubated in the ED (14.4 vs. 2.8%). The median time to first IV fluid bolus was faster in the EMS group (36 vs. 57 min). Using Cox LASSO to adjust for potential covariates, time to fluids remained faster for the EMS group (HR 1.26, 95% CI 1.12, 1.42). Time to antibiotics, ICU LOS, 3- or 30-day mortality rates did not differ, yet median hospital LOS was significantly longer in those transported by EMS versus self-transported (6.5 vs. 5.3 days). Conclusions Children with sepsis transported by EMS are a sicker population of children than those self-transported on arrival and had longer hospital stays. EMS transport was associated with earlier in-hospital fluid resuscitation but no difference in time to first antibiotic. Improved prehospital recognition and care is needed to promote adherence to both prehospital and hospital-based sepsis resuscitation benchmarks.

Adolescents with autism spectrum disorder (ASD) without an intellectual disability have daily living skills (DLS) impairments. An initial feasibility pilot of Surviving and Thriving in the Real World (STRW), a group intervention that targets DLS, demonstrated significant improvements. A pilot RCT of STRW was conducted to extend these findings. Twelve adolescents with ASD were randomized to the treatment or waitlist groups. The treatment group had significant DLS improvements on the Vineland Adaptive Behavior Scales, 3(rd) Edition and the DLS goal attainment scale. Four adolescents from the waitlist crossed over and completed STRW. Entire sample analyses with 10 participants demonstrated large DLS gains. Results provide further evidence of the efficacy of STRW for closing the gap between DLS and chronological age.

To determine if time to tracheostomy decannulation differs among children by socioeconomic status.Case series with chart review.Tertiary pediatric medical center.Patients (≤21 years old) who underwent tracheostomy from January 1, 2011, to December 31, 2016. Patients were divided into 2 groups based on their socioeconomic status (SES), low SES and high SES. Principal components analysis was used to create an index for SES using census data obtained by the US Census Bureau's American Community Survey 5 year data profile from 2013 to 2017. Statistical analysis was performed using a χIn total, 215 patients were included; of these patients, 111 patients (52%) were included in the high-SES group and 104 patients (48%) were included in the low-SES group. There was a significant difference in the time to decannulation for children based on SES status, with those children in the low-SES group taking on average 10 months longer to decannulate (38.7 vs 28.0 months,Health care disparities appear to exist among children undergoing decannulation of their tracheostomy tube. Patients with lower SES had a significantly longer time to decannulation than those with higher SES.

Background:Infants with single ventricle congenital heart disease demonstrate increasing head growth after bidirectional Glenn; however, the expected growth trajectory has not been well described.Aims:1) We will describe the pattern of head circumference growth in the first year after bidirectional Glenn. 2) We will determine if head growth correlates with motor developmental outcomes approximately 12 months after bidirectional Glenn.Methods:Sixty-nine single ventricle patients underwent bidirectional Glenn between 2010 and 2016. Patients with structural brain abnormalities, grade III–IV intra-ventricular haemorrhage, significant stroke, or obstructive hydrocephalus were excluded. Head circumference and body weight measurements from clinical encounters were evaluated. Motor development was measured with Psychomotor Developmental Index of the Bayley Scales of Infant Development, Third Edition. Generalised estimating equations assessed change in head circumference z-scores from baseline (time of bidirectional Glenn) to 12 months post-surgery.Results:Mean age at bidirectional Glenn was 4.7 (2.3) months and mean head circumference z-score based on population-normed data was −1.13 (95% CI −1.63, −0.63). Head circumference z-score increased to 0.35 (95% CI −0.20, 0.90) (p < 0.0001) 12 months post-surgery. Accelerated head growth, defined as an increase in z-score of >1 from baseline to 12 months post-surgery, was present in 46/69 (66.7%) patients. There was no difference in motor Psychomotor Developmental Index scores between patients with and without accelerated head growth.Conclusion:Single ventricle patients demonstrated a significant increase in head circumference after bidirectional Glenn until 10–12 months post-surgery, at which time growth stabilised. Accelerated head growth did not predict sub-sequent motor developmental outcomes.

To determine the optimal timing of the first posttracheostomy microlaryngoscopy and bronchoscopy (MLB).Case series with chart review.Tertiary pediatric medical center.Patients (21 years of age) who underwent tracheostomy placement from January 1, 2011, to December 31, 2016. Patients were divided into early and late posttracheostomy surveillance groups (6 weeks vs 6 to 14 weeks, respectively) based on the timing of their first posttracheostomy MLB. The primary outcome was to ascertain the clinical yield of the initial posttracheostomy MLB by documenting whether a medical or surgical treatment decision was made based on MLB findings.In total, 202 patients were included; of these patients, 162 met criteria for placement in the early group and 40 met criteria for the late group. There was no significant difference between the early and late groups regarding whether a medical or surgical decision was made at the time of the first MLB (21.5% vs 19%, respectively;The presence of tracheostomy-related symptoms was predictive of a medical or surgical decision being made using information obtained at the time of the first posttracheostomy MLB. We thus recommend that surveillance endoscopy be initiated when tracheotomized children start to develop tracheostomy-related symptoms.

Children who are deaf and hard of hearing (DHH) often demonstrate pragmatic language difficulties which can impact academic and social outcomes. This randomized control trial for DHH children, ages 3–12 years, explored the Technology-Assisted Language Intervention (TALI), incorporating augmentative and alternative communication technology (AAC) into traditional speech/language therapy, compared to treatment-as-usual (TAU) to determine impact on pragmatics. Pragmatic outcome measures included parent reported Pragmatics Profile of the CELF-5 (for children age ≥5 years) and CELF-P Descriptive Pragmatics Profile (for children

OBJECTIVE Literacy skill development in deaf or hard of hearing (DHH) children is essential for success in school and beyond. Our objective was to evaluate the association between age of early intervention (EI) enrollment for DHH children and emergent literacy in preschool. METHODS This was a population-based study that leveraged state public health and education data on all children identified with hearing loss. The sample included children born between 2008 and 2014 enrolled in EI for hearing loss who received preschool supports (years 2011-2014) through the Ohio Department of Education. The Get it! Got it! Go!, measuring emergent literacy domains of picture naming, rhyming, and alliteration, was administered during preschool in fall and spring. Exposure was enrollment into EI before age 6 months (early) versus at/after 6 months (later). Propensity score matching and mixed model analyses were used to examine associations between EI enrollment and outcomes over time. Model least square means with 95% confidence intervals (CIs) were reported. RESULTS One hundred two successful matches were made for 256 preschoolers. Children enrolled in EI early had significantly higher mean scores (mean [95% CI]) over time for emerging literacy domains of picture naming (2.42 [0.47-4.37]), rhyming (1.2 [0.35-2.06]), and alliteration (0.61 [0.15-1.07]) compared with later enrolled children. Children enrolled early had significantly higher emergent literacy scores at entry, although literacy development was similar between groups. CONCLUSION Children enrolled in EI before age 6 months had consistently higher scores in emergent literacy components over time compared with children enrolled at/after age 6 months.

PURPOSE: There is a gap in knowledge regarding the use of emergency services by pediatric spina bifida patients. The goal of this study was to describe Emergency Department utilization patterns in this population. METHODS: Through a retrospective observational study, patients with spina bifida who visited the emergency department during a four-year period were identified; medical and demographic information was obtained though the Centers for Disease Control National Spina Bifida Patient Registry. Chief complaints and final diagnoses of visits were classified and related to medical needs of spina bifida to determine the appropriate care level. RESULTS: Among 303 children within the registry, 161 patients (53%) accounted for 579 visits. 70% of visits were for spina bifida-related complaints. Approximately half (51.7%) had a shunt-related chief complaint, although final diagnosis was largely unrelated to the shunt. Admission rate was 39%, higher than institutional baseline, and largely represented by genitourinary (GU) complaints. CONCLUSION: Pediatric patients with spina bifida presenting to a single center emergency department were most likely to present with shunt and urinary concerns; these patients were most likely to be admitted. This potentially suggests that improving outpatient care for bladder management may decrease emergency department use among this population.

OBJECTIVE Posttonsillectomy hemorrhage can be life-threatening, so we investigated whether patients are at increased risk with an inexperienced surgeon. There is scant information on how surgical experience affects outcomes in pediatric tonsillectomy. We hypothesized that supervised residents would have longer operative times but no difference in complication rates compared to attending surgeons. STUDY DESIGN Retrospective case series of children who underwent tonsillectomy from July 2014 to April 2017 at a tertiary pediatric medical center. METHODS We assessed outcomes and operative times, based on the primary surgeon's level of training, for children (14 months to 22 years) who underwent tonsillectomy. RESULTS A total of 7,606 children were included (mean age 7.0 ± 4.1 years, 51% female) with a mean body mass index (BMI) of 18.6 ± 5.48 kg/m2 ; 76% were white; and 13% were black. Residents assisted with tonsillectomy in 43% of cases. The readmission rate (5%-6%) was not different (P = 0.48) by level of experience. Similarly, return to the operating room for control of hemorrhage (3.3%-3.5%) did not differ by level of experience (P = 0.95). The median procedure time for adenotonsillectomy was shortest for attendings (9 minutes), followed by fellows (13 minutes), and residents (14 minutes, P

Background Smart pumps have been widely adopted but there is limited evidence to understand and support their use in pediatric populations. Our objective was to assess whether smart pumps are effective at reducing medication errors in the neonatal population and determine whether they are a source of alert burden and alert fatigue in an intensive care environment. Methods Using smart pump records, over 370,000 infusion starts for continuously infused medications used in neonates and infants hospitalized in a level IV NICU from 2014 to 2016 were evaluated. Attempts to exceed preset soft and hard maximum limits, percent variance from those limits, and pump alert frequency, patterns and salience were evaluated. Results Smart pumps prevented 160 attempts to exceed the hard maximum limit for doses that were as high as 7–29 times the maximum dose and resulted in the reprogramming or cancellation of 2093 infusions after soft maximum alerts. While the overall alert burden from smart pumps for continuous infusions was not high, alerts clustered around specific patients and medications, and a small portion (17%) of infusions generated the majority of alerts. Soft maximum alerts were often overridden (79%), consistent with low alert salience. Conclusions Smart pumps have the ability to improve neonatal medication safety when compliance with dose error reducing software is high. Numerous attempts to administer high doses were intercepted by dosing alerts. Clustered alerts may generate a high alert burden and limit safety benefit by desensitizing providers to alerts. Future efforts should address ways to improve alert salience.

We quantified the intensity of early intervention (EI) services allocated to 1262 children who were deaf or hard of hearing (DHH) within a state program and identified factors associated with intervention intensity. Child specific data were collected on children born between 2008 and 2014. Data from Individualized Family Service Plans of children enrolled in Part C EI programming were evaluated for the type and duration of services during their EI enrollment. Associations between EI intensity and child/family variables were examined. Median age of EI enrollment was 5.3 months. The most frequently received services included primary service coordination, specialized DHH service, special instruction, language therapy, and family training; 60% of children received 4 or more different EI services. The median service intensity was 138.1 min per month across all EI years. The factors associated with higher EI intensity included severe hearing loss, bilateral hearing loss and presence of a disability. Children enrolled in EI at later ages received higher intensity of specialized DHH services, suggesting a need to “catch up” due to late acquisition of services. Evaluating EI service intensity broadens our understanding of effective components of state-based programs that support the developmental needs of children who are DHH.

BACKGROUND: Youth in protective custody (e.g.. foster care) are at higher risk for poorer physical and mental health outcomes compared with those who are not in custody. These differences may be due in part to the lack of research on the population to create evidence-based recommendations for health care delivery. A potential contributor to this lack of research is difficulties in obtaining informed consent for empirical studies in this population. The objective of this study was to describe the approaches to obtaining informed consent in minimal risk studies of foster youth and provide recommendations for future requirements. METHODS: We conducted a systematic review of the literature to characterize the informed consent approaches in published minimal risk research involving youth in foster care. We searched PubMed, CINAHL, PsychINFO, Embase, ERIC, Scopus, and EBMR. Inclusion criteria were: studies conducted in the United States, included current foster youth, minimal risk, peer reviewed, and published in English. Full text was reviewed, and individuals required to consent and assent were extracted. RESULTS: Forty-nine publications from 33 studies were identified. Studies required 0 to 3 individuals to consent. Individuals required to give consent included case workers (16, 48%), foster caregivers (12, 36%), biological parents (7, 21%), judges (5, 15%), and guardian ad litems (2, 6%). Twenty-nine (88%) studies required the youth’s assent. The studies used 14 different combinations of individuals. One (3%) study utilized a waiver of consent. CONCLUSIONS: There is no consistent approach for obtaining informed consent for foster youth to participate in minimal risk research. Consent should ideally involve individuals with legal authority and knowledge of the individual youth’s interests and should not be burdensome. Consensus regarding consent requirements may facilitate research involving foster youth.

Objective Cochlear implant (CI) recipient’s speech perception performance is highly variable and is influenced by temporal processing abilities. Temporal processing is commonly assessed using a behavioral task that requires the participant to detect a silent gap with the pre- and post-gap stimuli of the same frequency (within-frequency gap detection) or of different frequencies (across-frequency gap detection). The purpose of the study was to evaluate behavioral and electrophysiological measures of within- and across-frequency temporal processing and their correlations with speech perception performance in CI users. Design Participants included 11 post-lingually deafened adult CI users (n = 15 ears; Mean Age = 50.2 yrs) and 11 age- and gender-matched normal hearing (NH) individuals (n = 15 ears; Mean Age = 49.0 yrs). Speech perception was assessed with Consonant-Nucleus-Consonant Word Recognition (CNC), Arizona Biomedical Sentence Recognition (AzBio), and Bamford-Kowal-Bench Speech-in-Noise Test (BKB-SIN) tests. Within- and across-frequency behavioral gap detection thresholds (referred to as the GDTwithin and GDTacross) were measured using an adaptive, two-alternative, forced-choice procedure. Cortical auditory evoked potentials (CAEPs) were elicited using within- and across-frequency gap stimuli under four gap duration conditions (no gap, GDT, sub-threshold GDT, and supra-threshold GDT). Correlations among speech perception, GDTs, and CAEPs were examined. Results CI users had poorer speech perception scores compared to NH listeners (p < 0.05), but the GDTs were not different between groups (p > 0.05). Compared to NH peers, CI users showed increased N1 latency in the CAEPs evoked by the across-frequency gap stimuli (p < 0.05). No group difference was observed for the CAEPs evoked by the within-frequency gap (p > 0.05). Three CI ears showing the longest GDTwithin also showed the poorest performance in speech in noise. The within-frequency CAEP increased in amplitude with the increase of gap duration; while the across-frequency CAEP displayed a similar amplitude for all gap durations. There was a significant correlation between speech scores and within-frequency CAEP measures for the supra-threshold GDT condition, with CI users with poorer speech performance having a smaller N1-P2 amplitude and longer N1 latency. No correlations were found among GDTacross, speech perception, and across-frequency CAEP measures. Conclusions Within- and across-frequency gap detection may involve different neural mechanisms. The within-frequency gap detection task can help identify CI users with poor speech performance for rehabilitation. The within-frequency CAEP is a better predictor for speech perception performance than the across-frequency CAEP.

OBJECTIVES. To compare the percentage and mean age of children with Down syndrome (DS) who underwent polysomnography (PSG) to evaluate for obstructive sleep apnea (OSA) before and after the introduction of the American Academy of Pediatrics guidelines recommending universal screening by age 4 years. STUDY DESIGN. Retrospective cohort study. SETTING. Single tertiary pediatric hospital. METHODS. This study is a review of patients with DS seen in a subspecialty clinic. Children born preguidelines (2000-2006) were compared with children born postguidelines (2007-2012) regarding percentage receiving PSG, age at first PSG, and rate of OSA. RESULTS. We included 766 children with DS; 306 (40%) were born preguidelines. Overall, 61% (n = 467) underwent PSG, with a mean ± SD age of 4.2 ± 2.9 years at first PSG; 341 (44.5%) underwent first PSG by age 4 years. The rate of OSA (obstructive index ≥1 event/hour) among children undergoing first PSG was 78.2%. No difference was seen in the percentage receiving PSG preguidelines (63.4%) versus postguidelines (59.4%, P = .26). The mean age at the time of first PSG was 5.3 ± 3.5 years preguidelines versus 3.4 ± 2.0 years postguidelines (P < .0001). Children in the postguidelines cohort were more likely to undergo first PSG during the ages of 1 through 4 years (67.4% vs 52.1%, P < .0001). There was no difference in rates of OSA between the pre- and postguidelines cohorts (79.8% vs 75.9%, P = .32). CONCLUSIONS. Nearly two-thirds of children with DS (61%) underwent PSG overall, with a significant shift toward completion of PSG at an earlier age after the introduction of the American Academy of Pediatrics guidelines for universal screening for OSA.

Objective: To inform the future development of a pediatric prehospital sepsis tool, we sought to 1) describe the characteristics, emergent care, and outcomes for children with septic shock who are ...

OBJECTIVES. To compare the demographic and clinical characteristics of children with Down syndrome who did and did not receive polysomnography to evaluate for obstructive sleep apnea after publication of the American Academy of Pediatrics’ guidelines recommending universal screening by age 4 years. STUDY DESIGN. Retrospective cohort study. SETTING. Single tertiary pediatric hospital. METHODS. Review was conducted of children with Down syndrome born between 2007 and 2012. Children who obtained polysomnography were compared with children who did not, regarding demographic data, socioeconomic status, and comorbidities. RESULTS. We included 460 children with Down syndrome; 273 (59.3%) received at least 1 polysomnogram, with a median age of 3.6 years (range, 0.1–8.9 years). There was no difference in the distribution of sex, insurance status, or socioeconomic status between children who received polysomnography and those who did not. There was a significant difference in race distribution (P = .0004) and distance from home to the medical center (P < .0001) between groups. Among multiple medical comorbidities, only children with a history of hypothyroidism (P = .003) or pulmonary aspiration (P = .01) were significantly more likely to have obtained polysomnography. CONCLUSIONS. Overall, 60% of children with Down syndrome obtained a polysomnogram. There was no difference between groups by payer status or socioeconomic status. A significant difference in race distribution was noted. Proximity to the medical center and increased medical need appear to be associated with increased likelihood of obtaining a polysomnogram. This study illustrates the need for improvement initiatives to increase the proportion of patients receiving guideline-based screening.

Although major strides have been made in supporting the linguistic development of deaf and hard of hearing (DHH) children, a high risk of pragmatic delay persists and often goes unrecognized. Pragmatic development (the growing sensitivity to one’s communication partner when producing and comprehending language in context) is fundamental to children’s social-cognitive development and to their well-being. We review the reasons why DHH children are vulnerable to pragmatic developmental challenges and the potential to create positive change. In this call to action, we then urge (1) medical providers to recognize the need to monitor for risk of pragmatic difficulty and to refer for timely intervention (beginning in infancy), (2) allied health professionals involved in supporting DHH children to incorporate development of pragmatic abilities into their work and to foster awareness among caregivers, and (3) the research community to deepen our understanding of pragmatics in DHH children with investigations that include pragmatics and with longitudinal studies that chart the paths to positive outcomes while respecting the diversity of this population. By working together, there is substantial potential to make rapid progress in lifting developmental outcomes for DHH children.

Machine learning (ML) provides the ability to examine massive datasets and uncover patterns within data without relying on a priori assumptions such as specific variable associations, linearity in relationships, or prespecified statistical interactions. However, the application of ML to healthcare data has been met with mixed results, especially when using administrative datasets such as the electronic health record. The black box nature of many ML algorithms contributes to an erroneous assumption that these algorithms can overcome major data issues inherent in large administrative healthcare data. As with other research endeavors, good data and analytic design is crucial to ML-based studies. In this paper, we will provide an overview of common misconceptions for ML, the corresponding truths, and suggestions for incorporating these methods into healthcare research while maintaining a sound study design.

ObjectiveTo study the impact of a clinical care pathway and computerised order set on short-term post-operative outcomes for patients undergoing head and neck free tissue transfer.MethodsIn this retrospective cohort study, patients who underwent head and neck free tissue transfer by a single reconstructive surgeon between January 2007 and July 2009 were assigned to one of two cohorts based on the timing of their surgery: pre- or post-clinical care pathway implementation. Measured outcomes included peri-operative complications and mortality, length of hospital stay and costs, unplanned reoperations, and readmissions within 30 days of discharge.ResultsThe pre-clinical care pathway cohort included 81 patients and the post-clinical care pathway cohort comprised 46. Implementation of the clinical care pathway was associated with decreased variability in length of hospital stay (median (interquartile range) = 8 (6, 11) vs 7 (6, 9) days). The post-clinical care pathway cohort also had a significantly lower unplanned reoperation rate (15.2 vs 35.8 per cent, p = 0.01).ConclusionA clinical care pathway is a successful means of standardising and improving complex patient care. In this study, care pathway implementation in head and neck free tissue transfer patients improved efficiency and the quality of patient care.

Objectives The purpose of this study was to describe how pediatric cardiac intensive care clinicians assess and manage delirium in patients following cardiac surgery. Design Descriptive self-report survey. Setting A web-based survey of pediatric cardiac intensive care clinicians who are members of the Pediatric Cardiac Intensive Care Society. Patient or subjects Pediatric cardiac intensive care clinicians (physicians and nurses). Interventions None. Measurement and main results One-hundred seventy-three clinicians practicing in 71 different institutions located in 13 countries completed the survey. Respondents described their clinical impression of the occurrence of delirium to be approximately 25%. Most respondents (75%) reported that their ICU does not routinely screen for delirium. Over half of the respondents (61%) have never attended a lecture on delirium. The majority of respondents (86%) were not satisfied with current delirium screening, diagnosis, and management practices. Promotion of day/night cycle, exposure to natural light, deintensification of care, sleep hygiene, and reorientation to prevent or manage delirium were among nonpharmacologic interventions reported along with the use of anxiolytic, antipsychotic, and medications for insomnia. Conclusions Clinicians responding to the survey reported a range of delirium assessment and management practices in postoperative pediatric cardiac surgery patients. Study results highlight the need for improvement in delirium education for pediatric cardiac intensive care clinicians as well as the need for systematic evaluation of current delirium assessment and management practices.

Objectives/hypothesis Over the past decade, thoracic slide tracheoplasty (TST) has become the principal operation in the management of congenital tracheal stenosis. The purpose of this report was to describe our experience with revision TST following unsuccessful prior tracheal reconstruction. Study design Retrospective analysis at an academic children's hospital. Methods Patients undergoing TST on cardiopulmonary bypass between January 2005 and May 2014 were reviewed. Patients with a history of prior airway surgery were extracted for further analysis. Preoperative patient variables and postoperative outcomes were evaluated and compared between patients undergoing revision slide tracheoplasty (RTST) and a control group of 26 matched patients undergoing primary surgery TST. Results Twenty-six revision patients (25 referrals, one primary patient) of 162 patients reviewed over the study period met inclusion criteria. Twenty-three patients had a history of complete tracheal rings, and three patients had cartilaginous deficiency. A total of 41 airway reconstruction procedures had been performed prior to RTST. When compared to primary TST, patients undergoing RTST required fewer cardiac procedures intraoperatively, and fewer mean ventilator hours (P = .01) postoperatively. There was no significant difference in the median length of stay, requirement of >48 hours ventilation, or postoperative complications between groups. There was one nonsurgical postoperative mortality following RTST. Conclusions Despite some differences in the postoperative management when compared to nonrevision cases, revision TST can be successfully performed after prior tracheal reconstruction with good postoperative outcomes. Level of evidence 4. Laryngoscope, 128:2181-2186, 2018.

OBJECTIVE To describe the characteristics of treatment decisions to address challenging behaviors in children with autism spectrum disorder (ASD). METHODS Parents of children aged 4 to 15 years with ASD seen in a developmental behavioral pediatric (DBP) clinic completed validated measures to characterize their child's behaviors and their own level of stress. Parents reported their treatment priority before the visit. During the visit, we assessed shared decision making (SDM) using the Observing Patient Involvement (OPTION) scale and alignment of the clinician's treatment plan with the parent's priority. Before and after the visit, parents rated their uncertainty about the treatment plan using the Decisional Conflict Scale (DCS). We calculated descriptive statistics for the measures. RESULTS Fifty-four families participated. Children were a mean (SD) age of 8.8 (3.3) years, and 87% were male. Children had a variety of behavioral challenges, and parents reported high levels of stress. Commonly reported parent treatment priorities were hyperactivity, tantrums, anxiety, and poor social skills. Levels of SDM were low, with a mean (SD) OPTION score of 24.5 (9.7). Parent priorities were addressed in 65% of treatment plans. Approximately 69% of parents had elevated DCS scores before the visit. Although levels of decisional conflict were lower after the visit compared with before the visit (p < 0.03), 46% of parents continued to report high scores on the DCS. CONCLUSION Parents leave DBP visits with feelings of uncertainty about treatment decisions and with treatment plans that do not always address their priorities. SDM interventions hold promise to improve the quality of ASD treatment decisions.

There is a significant lack of evidence guiding our understanding of the needs of families of children who are deaf/hard of hearing (Deaf/HH) with an autism spectrum disorder (ASD). Much of our current knowledge is founded in case report studies with very small numbers of children with the dual diagnosis.The purpose of this study was to gain an understanding of the factors relating to caregiver stress and needs (i.e., supports and interventions) in families of children who are Deaf/HH with ASD.Comparison groups of families of children who were Deaf/HH, families with a hearing child with ASD, and families of children who were Deaf/HH with ASD were administered standardized questionnaires of stress with brief qualitative questionnaires focusing on family-identified needs.Six families of children with the dual diagnosis, four families of children who were Deaf/HH, and three families of children with ASD.Surveys included demographic and support questionnaires, the Parenting Stress Index (PSI), the Pediatric Hearing Impairment Caregiver Experience, and a qualitative questionnaire.Families of children who were Deaf/HH with ASD had a higher median total stress score on the PSI as compared to families of children who were Deaf/HH only (58.5 versus 41.5, respectively; p = 0.02) and higher Child Domain scores (60 versus 43, respectively; p = 0.02), indicating higher levels of stress in families of children with the dual diagnosis. The families of children who were Deaf/HH with ASD reported similar levels of stress as families of children with ASD.Families of children who are Deaf/HH with an ASD experience stress and describe similar needs and priorities as families of hearing children with ASD. This suggests the needs related to having an autism spectrum disorder are of high priority in families of children with the dual diagnosis.

Objective Little is known about developmental outcomes in neonatal abstinence syndrome (NAS). We hypothesized that children treated for NAS would score lower than the normative sample on the Bayley Scales of Infant Development, 3rd edition. Study design We performed a retrospective cohort study of 87 infants treated for NAS and evaluated at 2 years of age. Results Children treated for NAS scored significantly lower than the norm (mean 100) on all 3 subscales (cognitive mean 96.5, language mean 93.8, motor mean 94.0, all p

Objectives To determine whether participation in a home visiting program increases and expedites utilization of early intervention services for suspected developmental delays. Methods Children participating in Every Child Succeeds (ECS), a large home visiting (HV) program serving greater Cincinnati, between 2006 and 2012, were propensity score matched to a sample of children identified from birth records who did not receive services from ECS. Data were linked to early intervention (EI) data acquired from the Ohio Department of Health. Descriptive statistics were employed to evaluate success of the matching. Chi square and log-rank tests evaluated whether the proportion of children accessing EI and the time to EI services differed for families participating in HV compared to eligible children not participating. Logistic regression and Cox proportional hazards regression modeled the associations. Results Among 3574 HV and 3574 comparison participants, there was no difference in the time to EI service utilization; however a higher percentage of HV participants accessed services. Overall, 6% of the HV group and 4.3% of the comparison group accessed services (p = 0.001). Modeling revealed an odd ratio = 1.43 [95% confidence interval (CI) 1.16-1.78, p value = 0.001] and hazard ratio = 1.42 [95% CI 1.15-1.75, p value = 0.001]. Differences in utilization were greatest directly after birth and between approximately 2 and 3 years. Conclusions for Practise Participation in home visiting was associated with greater utilization of EI services during two important developmental time points, demonstrating that home visiting may serve as an important resource for facilitating access to early intervention services.

Objective Home oximetry is commonly used to screen for obstructive sleep apnea (OSA) in children; however, normal oxygen desaturation levels by disease severity are not well known. It was our objective to determine if oxygen saturation levels differed by OSA severity category in children and if these differences were similar for preteen children and adolescents. Study Design Retrospective case series of children undergoing polysomnography from September 2011 to July 2015. Setting Tertiary pediatric hospital. Subjects and Methods Six- to 18-year-olds (preteen, 6-12 years old; adolescent, 13-18 years old). Chi-square, Wilcoxon rank sum test, and Kruskal-Wallis testing were used to compare variables between age groups. Results The study included 342 children with a mean age of 11.3 ± 2.4 years (range, 6.5-17.5) and a mean body mass index of 25.6 ± 9.2 kg/m2 (78 ± 29 percentile); 61% were white, 35% were black, and 4% were other or unknown. Of the children, 48% were female, and this was not a significant difference between age groups ( P = .81). Overall, 50% of the children had no OSA, 32% mild, 10% moderate, and 8% severe. When compared with the younger children, the adolescents had a longer sleep time ( P = .014) and a higher mean obstructive apnea-hypopnea index (3.53 ± 5.1 vs 3.03 ± 6.1 events per hour, P = .02). The 3% and 4% oxygen desaturation indices were not significantly different between age groups when accounting for OSA severity. Conclusion Adolescents have longer sleep times and higher obstructive apnea-hypopnea indexes than preteens, but oxygen saturations and desaturation indices were similar. This supports current triage algorithms for children with OSA, as we found no significant age-based differences.

OBJECTIVE Determine if overnight stenting is warranted after pharyngeal flap for management of velopharyngeal insufficiency (VPI) in pediatric patients METHODS: This is a retrospective age-matched cohort study from a single tertiary pediatric facility. Patients who underwent a posterior pharyngeal flap for VPI from January 1, 2013, to December 31, 2016, were included. Two equal groups were constructed based on when their nasal stents were removed, that is, postoperative day (POD) 0 or POD 1. Primary outcome measure was oxygen desaturation after surgery. Secondary outcome measures were total length of stay, need for narcotics, and oral intake based on POD. Additional information was gathered and evaluated as possible prognostic variables. RESULTS There were 27 matched pairs included in the study. One patient from each group required supplemental oxygen during the night of surgery. No escalation of care was needed in either case. The group whose stents were removed on POD 0 were discharged earlier than the group whose stents were removed on POD 1, P < 0.0001. The POD 0 group took significantly more oral intake on POD 0 than the POD 1 group, P = 0.03. The POD 0 group had significantly more genetic syndromes than the POD 1 group, P = 0.02. CONCLUSION There was no benefit with overnight stenting. Earlier discharge from the hospital was achieved in the POD 0 group. No patient experienced need for reintubation, escalation of clinical care, postoperative hemorrhage, or death. LEVEL OF EVIDENCE 4. Laryngoscope, 128:750-755, 2018.

OBJECTIVE Psychotropic medications are frequently prescribed to children with autism spectrum disorder (ASD), but little is known about the prescribing practices of developmental-behavioral pediatricians (DBPs). Our objective was to determine whether clinical site, age, insurance, or comorbidities influenced DBPs prescribing psychotropic medication for children with ASD. METHODS A retrospective analysis was performed using electronic health record data of all patients with ASD seen at 3 academic developmental-behavioral pediatrics (DBP) clinical programs from January 2010 to December 2011. Data included age, diagnoses, primary insurance, and medications prescribed. Factors associated with prescribing psychotropic medication were examined using generalized estimating equations. RESULTS Sites varied in the frequency with which they prescribed psychotropic medication for children with ASD (site 1: 33.1%, site 2: 49.3%, site 3: 4.0%; p < .001). We found that the following factors predicted prescribing of psychotropic medications: comorbidities (odds ratio [OR]: 2.87; 95% confidence interval [CI], 2.58-3.18), age, and primary insurance. However, the impact of insurance depended on age. For 3- to 5-year-old children, those on Medicaid were more likely to be prescribed psychotropic medications than those with private insurance (OR: 1.65; 95% CI, 1.29-2.12). This was particularly true for alpha-2-adrenergic agonists (OR: 2.48; 95% CI, 1.56-3.92) and atypical antipsychotics (OR: 2.57; 95% CI, 1.46-4.55). CONCLUSION There are large variations in prescribing psychotropic medication to children with ASD at 3 academic DBP programs. Further research is needed to understand factors that contribute to higher use of psychotropic medication in young children with Medicaid.

Objective To determine common polysomnographic (PSG) diagnoses for children referred by otolaryngologists. Study Design Retrospective case series with chart review. Setting Single tertiary pediatric hospital (2010-2015). Subjects and Methods Review of the medical records of 1258 patients undergoing PSG by otolaryngology referral. Patients who underwent previous otolaryngologic surgery were excluded. Data distributions were evaluated using means with standard deviations for continuous variables and frequencies with percentages for categorical variables. Results A total of 1258 patients were included; 55.9% were male, 64.5% were Caucasian, 16.6% had Down syndrome, and 48% had public insurance. The median age at the time of PSG was 5.2 years (range = 0.2-18.94). Indications for PSG were sleep-disordered breathing (SDB; 69.4%), restless sleep (12.7%), airway anomalies (7.5%), and laryngomalacia (7.2%). SDB was seen in 73.4%, obstructive sleep apnea (OSA) in 53.2%, OSA + central sleep apnea (CSA) in 4.5%, CSA in 0.9%, and non-OSA snoring in 15%. Other diagnoses included periodic limb movements of sleep (PLMS; 7.4%), hypoventilation (6.8%), and nonapneic hypoxemia (2.6%). SDB was more common in younger children and seen in 91.4% of children

Objectives/Hypothesis Tracheotomy is a common procedure. A reliable method of securing the tracheotomy tube is essential to minimize accidental decannulation. However, skin breakdown has been reported in ∼30% of patients. We sought to evaluate rates of skin-related complications and accidental decannulation with the use of Velcro ties compared to twill ties. Study Design A nonblinded, randomized controlled trial comparing Velcro versus twill ties in patients undergoing tracheotomy between July 1, 2014 and January 31, 2016. Methods Patients ≤21 years of age were recruited and randomized to receive either Velcro or twill ties. The primary outcome measure was skin-related complications. The secondary outcome measure was accidental decannulation. Outcome measures were followed through postoperative day 5. Results Ninety-three patients were eligible, and 63 were enrolled. No patients were withdrawn. Fifty-seven patients were included in the analysis. Twenty-seven (47.4%) received Velcro, and 30 (52.6%) received twill. Five enrolled patients did not undergo tracheotomy (one Velcro, four twill). One was diagnosed with a genetic skin condition after enrollment but prior to undergoing tracheotomy. Patient characteristics were similar between groups. No significant differences were found with respect to skin-related complications (P = .59). Six patients (20%) with twill ties required early tie change compared to two (7.4%) with Velcro ties (P = .5). Two accidental decannulations occurred in the twill group compared to one in the Velcro group (P = 1.0). Conclusions Our study demonstrated no differences in skin-related complications or accidental decannulation between Velcro and twill tracheotomy ties in the immediate postoperative period following tracheotomy. Our study suggests that Velcro ties are a viable alternative to twill ties. Level of Evidence 1b Laryngoscope, 127:1996–2001, 2017

Objectives (1) Describe longitudinal trends in annual prevalence of hospital admission for pediatric acute otitis media (AOM) and complications of AOM (CAOM) since introduction of pneumococcal vaccination in 2000 and (2) describe the longitudinal trend of prevalence of hospital admission for pneumococcal meningitis in children with AOM-related diagnoses in the postvaccination era. Study Design Retrospective analysis of Kids' Inpatient Database from 2000 to 2012. Setting Community, nonrehabilitation hospitals. Subjects and Methods To determine annual prevalence of admission for AOM/CAOM, nationally weighted frequencies of children aged

Pilot study to assess the effect of augmentative and alternative communication technology to enhance language development in children who are deaf or hard-of-hearing.Five children ages 5-10 years with permanent bilateral hearing loss who were identified with language underperformance participated in an individualized 24-week structured program using the application TouchChat WordPower on iPadsThe baseline median mean length of utterance was 2.41 (range 1.09-6.63; mean 2.88) and significantly increased over time (p = 0.002) to a median of 3.68 at final visit (range 1.97-6.81; mean 3.62). At baseline, the median total number of words spoken per language sample was 251 (range 101-458), with 100 (range 36-100) different words spoken. Total words and different words significantly increased over time (β = 26.8 (7.1), p = 0.001 for total words; β = 8.0 (2.7), p = 0.008 for different words). Mean turn length values also slightly increased over time.Using augmentative and alternative communication technology on iPads

Background Despite early identification and intervention, many children who are deaf/hard of hearing (D/HH) demonstrate significant gaps in language development which can directly impact social interactions. Aims The objective of this pilot study was to determine whether integrating augmentative and alternative communication (AAC) core word language strategies into a speech-language therapy program for young children who are D/HH improves spoken language outcomes. Methods Eleven young children, median age 5 years 7 months (range 3y;11 m to 10y;8 m) with bilateral hearing loss were enrolled in a single-case experimental design and completed a 24-week intervention that incorporated high-tech AAC strategies into a traditional speech-language therapy model (technology-assisted language intervention or TALI). The goal of the TALI was to improve spoken language development in children who were D/HH. Language samples were collected throughout the study and pragmatic language was assessed pre and post intervention. Results At the end of 24 weeks, children demonstrated a significant increase in their mean length of utterance, number of words spoken, and mean turn length according to language samples. Children also made gains in their pragmatic skills pre to post intervention. Conclusions Results of this study suggest that using AAC core word language strategies delivered via iPad technology may support continued and rapid spoken language skill growth among young school-age children who are D/HH. By leveraging AAC technology, we are pioneering a structured and dynamic approach to language learning, building an effective foundation for concepts and grammar for children who are D/HH.

Enhancing Patient and Family Experience (PFE) is vital to the delivery of quality healthcare services. Sociodemographic differences affect health outcomes and experiences, but research is limited on biases in PFE survey methodology. We sought to assess survey participation rates across sociodemographic characteristics. This retrospective study analyzed a health system’s ambulatory PFE survey data, collected January 1 – July 31, 2019. Outcomes of interest were rates of survey response, completion, and comments. Predictors included respondent-reported race, ethnicity, language, and measure of social deprivation attached to a respondent’s home address. Addresses were geocoded to census tracts. The tract’s degree of socioeconomic deprivation was defined using the Deprivation Index (DPI). Associations between outcomes and predictors were assessed using the Chi square test. 77,627 unique patient encounters were analyzed. Patients were predominantly White (76%); 5% were Hispanic; and 1% were Spanish-speaking. The overall response, completion, and comment rates were 20.1%, 17.6%, and 4.1%, respectively. There were significant differences across assessed sociodemographic characteristics in response, completion, and comment rates. White patients were most likely to respond, complete, and leave a comment. Spanish-speaking respondents and those living in the most deprived areas were more likely to respond and complete the survey, but less likely to comment than English-speaking respondents and those living in less deprived areas, respectively. PFE survey participation differs across a range of sociodemographic characteristics, potentially introducing noteworthy biases. Health systems should minimize differences in how they collect feedback and account for potential biases when responding to experience data. Experience Framework This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens.

Objectives/Hypothesis Lingual tonsil hypertrophy is a common cause of persistent airway obstruction in patients with Down syndrome (DS) following adenotonsillectomy (TA however, little is known about the effect of lingual tonsillectomy (LT) on polysomnographic outcomes in these patients. Our objective was to describe changes in sleep-related respiratory outcomes following LT in children with DS and persistent obstructive sleep apnea (OSA) following T&A. Study Design Retrospective case series. Methods We included all children with DS who underwent polysomnography before and after LT at a tertiary care center from 2003 to 2013. Nonparametric analysis of variables was performed. Results Forty patients with DS underwent LT; 21 met inclusion criteria. The mean age at surgery was 9.3 ± 4.3 years and 47.6% were female. The median apnea-hypopnea index (AHI) was 9.1 events/hour (range, 3.8 to 43.8 events/hour) before surgery and 3.7 events/hour (range, 0.5 to 24.4 events/hour) after surgery. The median improvement in overall AHI and the obstructive AHI (oAHI) were 5.1 events/hour (range, −2.9 to 41) and 5.3 events/hour (range, −2.9 to 41), respectively (P 50 mm Hg, central index, and percentage of rapid eye movement sleep were not significantly different. After surgery, the oAHI was

Aim Premature infants and those with brain injury often suffer from feeding intolerance and vomiting in the first several years of life. Cyproheptadine is a medication with antihistaminergic, antiserotonergic and anticholinergic effects, thought to increase gastric accommodation. We aimed to retrospectively review our experience using cyproheptadine for feeding intolerance and/or vomiting in children under the age of three. Methods This is a retrospective chart review of 39 patients less than three years of age who were prescribed cyproheptadine for feeding intolerance or vomiting and had follow-up information available. Results Starting dose ranged widely (from 0.069 to 0.825 mg/kg/day). Side effects such as sleepiness and constipation were rare. The medication had a significant positive effect, defined as resolution of vomiting, improved feeding tolerance or improved comfort with feeds, in 67% of children. An additional 28% showed possible improvement, defined as some improvement in vomiting or improvement in vomiting or feeding tolerance in conjunction with other changes in addition to cyproheptadine. Conclusion In our experience, cyproheptadine appears to be safe and effective in decreasing vomiting and feeding intolerance in children less than three years of age. A trial of cyproheptadine could be considered before invasive testing in infants with feeding issues.

BACKGROUND AND PURPOSE: Infants with congenital diaphragmatic hernia are reported to have evidence of brain MR imaging abnormalities. Our study aimed to identify perinatal clinical factors in infants with congenital diaphragmatic hernia that are associated with evidence of brain injury on MR imaging performed before hospital discharge. MATERIALS AND METHODS: MRIs performed before hospital discharge in infants with congenital diaphragmatic hernia were scored for brain injury by 2 pediatric neuroradiologists. Perinatal variables and clinical variables from the neonatal intensive care unit stay were analyzed for potential associations with brain MR imaging findings. RESULTS: Fifty-three infants with congenital diaphragmatic hernia (31 boys) were included. At least 1 abnormality was seen on MR imaging in 32 infants (60%). The most common MR imaging findings were enlarged extra-axial spaces (36%), intraventricular hemorrhage (23%), ventriculomegaly (19%), white matter injury (17%), and cerebellar hemorrhage (17%). The MR imaging brain injury score was associated with extracorporeal membrane oxygenation ( P = .0001), lack of oral feeding at discharge ( P = .012), use of inotropes ( P = .027), and gastrostomy tube placement before hospital discharge ( P = .024). The MR imaging brain injury score was also associated with a large diaphragmatic defect size ( P = .011). CONCLUSIONS: Most infants with congenital diaphragmatic hernia have at least 1 abnormality identified on MR imaging of the brain performed before discharge. The main predictors of brain injury in this population are a requirement for extracorporeal membrane oxygenation, large diaphragmatic defect size, and lack of oral feeding at discharge.