The Impact of Socioeconomic Status on Time to Decannulation Among Children With Tracheostomies.

OBJECTIVE: To determine if time to tracheostomy decannulation differs among children by socioeconomic status. STUDY DESIGN: Case series with chart review. SETTING: Tertiary pediatric medical center. METHODS: 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 χ2 for categorical variables and Wilcoxon rank-sum test for continuous variables. A general linear model was constructed to control for clinical factors to understand the independent effect of SES on time to decannulation. RESULTS: In 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, P = .0007). Median follow-up was 44.1 months (interquartile range, 29.6-61.3 months). CONCLUSION: 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.

Understanding the Needs of Families of Children Who Are Deaf/Hard of Hearing with an Autism Spectrum Disorder.

BACKGROUND: 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. PURPOSE: 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. RESEARCH DESIGN: 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. STUDY SAMPLE: Six families of children with the dual diagnosis, four families of children who were Deaf/HH, and three families of children with ASD. DATA COLLECTION AND ANALYSIS: Surveys included demographic and support questionnaires, the Parenting Stress Index (PSI), the Pediatric Hearing Impairment Caregiver Experience, and a qualitative questionnaire. RESULTS: 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. CONCLUSIONS: 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.

Preliminary efficacy of a daily living skills intervention for adolescents with high-functioning autism spectrum disorder.

Daily living skills deficits are strongly associated with poor adult outcomes for individuals with high-functioning autism spectrum disorder, and yet, there are no group interventions targeting daily living skills. Seven adolescents with autism spectrum disorder and their parents participated in a feasibility pilot of a 12-week manualized group treatment targeting specific daily living skills (i.e. morning routine, cooking, laundry, and money management). Outcomes included the Vineland Adaptive Behavior Scales, Second Edition (Vineland-II) age equivalence scores and four goal attainment scaling scores. Adolescents demonstrated significant improvement on two Vineland-II subdomains and on all goal attainment scaling scores at post-treatment and 6-month follow-up. The intervention has promise for improving critical daily living skills' deficits that affect independent living and employment. Limitations and implications for future studies are discussed.

Who Speaks for Me? Addressing Variability in Informed Consent Practices for Minimal Risk Research Involving Foster Youth.

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.

Factors Associated with Developmental Behavioral Pediatricians Prescribing Psychotropic Medication to Children with Autism Spectrum Disorder: A Study of Three DBPNet Sites.

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.

Influence of the WIC Program on Loss to Follow-up for Newborn Hearing Screening.

BACKGROUND: Newborn hearing screening has a high participation rate of ∼97% of infants nationally, but a high lost to follow-up of ∼32% limits the effectiveness of the program. This study tested an intervention of targeted outpatient rescreening of infants through collaboration with the Women, Infants, and Children (WIC) program to improve follow-up rates for newborn hearing screen referrals. METHODS: Controlled intervention study of WIC-eligible infants who referred on newborn hearing screens at target hospitals. Hearing rescreens were performed by using screening auditory brainstem response testing by trained research assistants, coordinated with the infant's WIC appointment. Loss to follow-up rates and age at follow-up were compared with non-WIC infants tracked via the Ohio Department of Health during the same time periods at the same hospitals and at nonintervention hospitals. RESULTS: During a 2-year period, there were 1493 hearing screen referrals at 6 hospitals in the Cincinnati region recorded by the Ohio Department of Health. Of these, 260 WIC-eligible infants were referred to the study. Among WIC-eligible intervention infants, the lost to follow-up rate over 2 years was 9.6%, compared with 28.7% for nonintervention infants in the same hospitals and 18.1% for nonintervention hospitals. The average age of hearing confirmation for the WIC intervention group was 34.8 days, compared with 63.6 days in non-WIC infants. One-third of mothers reported barriers to follow-up. CONCLUSIONS: Collaborating with WIC to provide targeted follow-up for newborn hearing screening improved loss to follow-up rates, decreased the age at hearing confirmation by 1 month, and addressed reported care barriers.

High-frequency sensorineural hearing loss in children.

OBJECTIVES/HYPOTHESIS: Determine the prevalence of high-frequency sensorineural hearing loss (HFSNHL) in our hearing loss population and a diagnostic algorithm for these patients. STUDY DESIGN: Retrospective case series. METHODS: We identified patients diagnosed with sensorineural hearing loss (SNHL) at our pediatric tertiary care institution from 1981 to 2010. Based on audiometric profiles, these patients were subdivided into those with a flat SNHL configuration and those with HFSNHL. Imaging and genetic testing data and data regarding age at diagnosis, laterality, and risk factors were obtained for both groups. Comparisons were then made between the two groups. RESULTS: Of 2,867 patients included in the study, 7.6% had HFSNHL. Age at diagnosis was significantly higher in HFSNHL patients (8.3 years vs. 6.1 years; P < .0001). These patients also had a significantly higher proportion of unilateral versus bilateral loss (49.1% vs. 26.1%; P < .0001); unilateral losses were also less severe. Genetic testing showed no significant difference between groups in the proportion of patients tested or in those who tested positive. Similarly, imaging data revealed no difference in the proportion of patients tested in the two groups; however, overall diagnostic yield was significantly higher in flat SNHL patients (29.5% vs.17.3; P = .02). CONCLUSIONS: The positive predictive value of simple genetic testing is similar to that of imaging studies. However, given cost differences between genetic testing and imaging, it is prudent to perform genetic testing as the initial diagnostic test. Determination of whether high-throughput, multigene diagnostic platforms offer an added benefit in the evaluation of children requires further study. LEVEL OF EVIDENCE: 4. Laryngoscope, 126:1236-1240, 2016.

Improving access and timeliness of care for veterans with head and neck squamous cell carcinoma: A multidisciplinary team's approach.

OBJECTIVES/HYPOTHESIS: With the prevalence of head and neck squamous cell carcinoma (HNSCC) nearly twice as high in veterans (6%) than general populations (3%), the noted problems of long waits and access to care in United States Veterans Affairs (VA) hospitals across the country are pressing. We examined primary outcome measures of timeliness and access to care for our patients with HNSCC assessing a multidisciplinary team approach at our VA hospital. STUDY DESIGN: Retrospective chart review. METHODS: Our patients newly diagnosed with HNSCC were identified from two 24-month periods: diagnosis before (group 1, 2005-2006) and after (group 2, 2008-2009) implementing our multidisciplinary team in 2007. No significant differences in age (P = .13) or disease stage (P = .18) occurred between groups. Primary and secondary outcomes (i.e., treatment modality, imaging, completion of treatment, survival) were compared. RESULTS: Timeliness to care improved for all measures. Improvement was significant for times from consult placed to seen in clinic (27.5-16.5 days; P < 0.0001) and from positive biopsy reported to date of initiating definitive treatment (35-27 days; P = 0.04). Pretreatment consults to various services represented by the multidisciplinary team increased from one to four (P < 0.0001). Two-year mortality was approximately the same between group 1 (33%) and group 2 (36%) (P = 0.035). Five-year mortality was slightly better in group 2 (50%) versus group 1 (61%), although not statistically significant. CONCLUSION: Our veteran population with HNSCC had improved timeliness and access to care with our multidisciplinary approach. LEVEL OF EVIDENCE: 4. Laryngoscope, 126:627-631, 2016.

Is the OSA-18 predictive of obstructive sleep apnea: comparison to polysomnography.

OBJECTIVES/HYPOTHESIS: To examine the ability of the OSA-18 to predict Obstructive Sleep Apnea (OSA) in a racially diverse population when compared to overnight polysomnography (PSG). STUDY DESIGN: Cross-sectional retrospective. METHODS: Children 2 to 12 years of age diagnosed with OSA who were treated at a tertiary care institution between 2008 and 2013 and had complete PSG and OSA-18 data were included. We performed logistic regression with OSA as the dependent variable and the OSA-18 total symptom score (TSS), age, gender, race, asthma, and body mass index (BMI) as independent variables. RESULTS: Seventy-nine children (32 females) were included (mean age 5.2 ± 2.4 years). The positive predictive value (PPV) was greater than 90 for an obstructive apnea-hypopnea index (oAHI) ≥ 1. The PPV and specificity were higher for white than for nonwhite children; however, sensitivity and negative predictive value (NPV) of OSA-18 TSS were low for mild, moderate, and severe OSA regardless of race. Age, race, and BMI were not significantly associated with oAHI. CONCLUSIONS: This study, conducted in a racially diverse cohort, examined the ability of the OSA-18 to predict OSA when compared to PSG-the gold standard-and found that sensitivity and NPV were extremely low for both white and nonwhite children. This suggests that the OSA-18 is not sufficiently sensitive to detect OSA nor sufficiently specific to determine the absence of OSA. The OSA-18 should be used as a quality-of-life indicator and is not a reliable substitute for PSG. LEVEL OF EVIDENCE: 4.

Cost analysis of mandibular distraction versus tracheostomy in neonates with Pierre Robin sequence.

OBJECTIVE: To evaluate costs associated with surgical treatment for neonates with Pierre Robin sequence (PRS). STUDY DESIGN: Retrospective cohort study. SETTING: Cincinnati Children's Hospital Medical Center. SUBJECTS AND METHODS: With Institutional Review Board approval, we retrospectively studied neonates with PRS treated from 2001 to 2009 with either tracheostomy (Trach), mandibular distraction (MD), or Trach with subsequent MD (Trach+MD). Actual charges over a 3-year period associated with operative costs, hospital stay, imaging and sleep studies, clinic visits, and related emergency room visits were collected. Home tracheostomy care charges were estimated individually for each patient. Charges were compared using regression and appropriate statistical analyses. RESULTS: Forty-seven neonates were included in the study (MD, n = 26; Trach, n = 12; Trach+MD, n = 9). Trach group patients had 2.6-fold higher charges than the MD group despite no difference in length of hospital stay. This difference increased to 7.3-fold when including home trach care-related costs. Trach+MD group patients had longer hospital lengths of stay and higher operation room (OR) fees, but no increased total charges compared with the Trach only group. CONCLUSIONS: For patients with severe PRS, mandibular distraction provides significant cost savings over tracheostomy ($300,000 per patient over 3 years). Increased costs with tracheostomy come from greater hospital-related charges, more frequent airway procedures, a higher incidence of gastrostomy tube feeds, and home trach care costs. A careful examination of long-term outcomes will be critical as mandibular distraction continues to gain acceptance for treatment of PRS.

The investment case for preventing NICU-associated infections.

BACKGROUND: Nosocomial [hospital-associated or neonatal intensive care unit (NICU)-associated] infections occur in as many as 10 to 36% of very low-birth-weight infants cared for in NICUs. OBJECTIVE: To determine the potentially avoidable, incremental costs of care associated with NICU-associated bloodstream infections. STUDY DESIGN: This retrospective study included all NICU admissions of infants weighing 401 to 1500 g at birth in the greater Cincinnati region from January 1, 2005, through December 31, 2007. Nonphysician costs of care were compared between infants who developed at least one bacterial bloodstream infection prior to NICU discharge or death and infants who did not. Costs were adjusted for clinical and demographic characteristics that are present in the first 3 days of life and are known associates of infection. RESULTS: Among 900 study infants with no congenital anomaly and no major surgery, 82 (9.1%) developed at least one bacterial bloodstream infection. On average, the cost of NICU care was $16,800 greater per infant who experienced NICU-associated bloodstream infection. CONCLUSION: Potentially avoidable costs of care associated with bloodstream infection can be used to justify investments in the reliable implementation of evidence-based interventions designed to prevent these infections.

Spatial analysis of preterm birth demonstrates opportunities for targeted intervention.

To develop a specific, targeted intervention strategy for reducing preterm birth through use of geographic analysis. We utilized Hamilton County, Ohio vital records and Census data from 2003 to 2006. Spatial scanning statistics allowed determination of the prevalence of preterm birth for any geographical point. Attributable risk calculations demonstrated heterogeneity of risk factors within areas of high or low preterm birth prevalence. Three geographically separate areas with high preterm birth proportions (>16%) had differing primary risk factors for preterm birth, including short interpregnancy interval, previous preterm birth, and low prepregnancy weight, despite similarities in demographics and physical location. Primary risk factors also differed when comparing areas with high and low preterm birth proportions, with diabetes and smoking having primary associations in the lower risk areas. Each local region of high preterm birth proportion as well as those with average or low proportion displayed distinct hierarchies of attributable risk. The heterogeneous distribution of preterm birth proportion within an urban county is complex and requires location specific analysis to develop targeted interventions.

Access to cochlear implant candidacy evaluations: who is not making it to the team evaluations?

The objective of this study was to investigate trends in the referral process among pediatric cochlear implant candidates. Medical and audiologic charts between 2003 and 2005 were reviewed, and children five years and younger with moderately-severe or worse sensorineural hearing loss were included. Of the 105 audiograms meeting the inclusion criteria, 69% were referred for a cochlear implant, and 52% were considered as definite candidates for an implant by audiologists with expertise in cochlear implant technology. Children referred for an implant, compared to children who were not referred, were more likely to have married parents (91% vs. 70%, p=0.02) and more likely to have private insurance (56% vs. 29%, p=0.02). Multivariable regression results were consistent with the unadjusted findings regarding marital status, but not insurance status. Children with sensorineural hearing loss are inconsistently referred to cochlear implant teams despite similar audiologic findings. To reach the Healthy People 2010 goals, this disparity should be addressed. A further understanding of the population of children not referred is important in diminishing inconsistencies and understanding barriers to care.

Use of a body proportionality index for growth assessment of preterm infants.

OBJECTIVE: To evaluate the utility of weight-for-length (defined as gm/cm(3), known as the "ponderal index") as a complementary measure of growth in infants in neonatal intensive care units (NICUs). STUDY DESIGN: This was a secondary analysis of infants (n=1214) of gestational age 26 to 29 weeks at birth, included in a registry database (1991-2003), who had growth data at birth and discharge. Weight-for-age and weight-for-length were categorized as small (<10th percentile), appropriate, or large (>90th percentile). RESULTS: Statistical agreement between the weight-for-age and weight-for-length measures was poor (kappa=0.02 at birth, 0.10 at discharge; Bowker test for symmetry, P< .0001). From birth to discharge, the percentage of small-for-age infants increased from 12% to 21%, the percentage of small-for-length infants decreased from 10% to 4%, the percentage of large-for-age infants remained similar (<1%), and the percentage of large-for-length infants increased from 5% to 17%. At discharge, 92% of the small-for-age infants were appropriate or large-for-length, and 19% of the appropriate-for-age infants were large-for-length. CONCLUSIONS: Weight-for-age and weight-for-length are complementary measures. Weight-for-length or other measures of body proportionality should be considered for inclusion in routine growth monitoring of infants in the NICU.

HIV-infected Rwandan women have a high frequency of long-term survival.

OBJECTIVES: To evaluate rates of long-term survival in a prospective, longitudinal, closed HIV cohort in Africa between 1986 and 2006. METHODS: A total of 548 HIV-infected Rwandan women were recruited from prenatal clinics in Kigali and followed at 3-6 month intervals to February 2006. Overall, 401 women (73%) were HIV positive at initial cross-sectional testing in 1986 (seroprevalent cohort) and 147 women (27%) were initially HIV negative but seroconverted during follow-up from 1986 to 1993 (seroincident cohort). Kaplan-Meier survival methods were used to calculate survival times censored in mid-2003. RESULTS: In February 2006, 109 women (20%) remained alive in the cohort. Time to 50% non-genocide mortality was 11.9 years among seroincident women and 8.9 years among seroprevalent women. Smoothed mortality rates increased with duration of follow-up to a peak of 0.12 deaths per person-year at 9.5 years of follow-up but subsequently declined. After 15 years of follow-up (pre-HAART introduction), the survival probability was 36% for seroincident women and 26% for seroprevalent women. Most survivors had virological and immunological evidence of disease progression. The median CD4 cell count of survivors declined from 447 cells/mul in 1998 to 268 cells/mul in 2003. Among survivors, 57 women (52%) met treatment criteria and initiated antiretroviral treatment by 2006. CONCLUSION: Although median survival times in this cohort were similar to those observed in high-income countries, the rates of long-term survival after 15 years of follow-up were higher than expected. A levelling off of mortality rates during the late stages of follow-up may explain this high rate of long-term survival.