Qualitative inquiry from multiple perspectives of barriers and facilitators of oral health care for adults with disabilities.

AIMS: Adults with special health care needs (ASHCN) face significant disparities in access to oral health care and subsequent health outcomes, resulting from several etiologies. This study investigated perspectives of patients, caregivers, and providers to better understand care barriers and facilitators for ASHCN. METHODS: We conducted 26 semi-structured interviews with a purposive sample from an academic clinic specializing in oral health care for ASHCN with disabilities [patients (N = 4), caregivers (N = 8), and providers (N = 14)], and thematically analyzed transcripts for care barriers and facilitators. RESULTS: Three overarching themes that encompassed overlapping barriers and facilitators of oral health care for ASHCN emerged: relational aspects, provider training/experience, and infrastructure aspects. Themes include intersecting perceptions of factors that hinder or help oral health care and management of ASHCN. CONCLUSIONS: Building relationships with patients, inherent empathetic provider characteristics, and accommodating clinical infrastructure are imperative to facilitate oral health care for ASHCN. The primary themes revealed in this study are facilitators to care when they are present, and barriers to care when they are absent. No individual theme stands alone as a single contributor to quality care, and the provision of care for ASHCN relies on coordination of providers, patients, caregivers, and the overarching infrastructure.

Pilot Trial of a Peer-to-Peer Psychoeducational Intervention for Parents of Black Children Awaiting a Developmental Evaluation.

OBJECTIVE: This study examined the short-term impact on child, family, and parent outcomes of a peer-to-peer psychoeducational intervention, Parents Taking Action (PTA) for Black families of children awaiting developmental-behavioral pediatric evaluations. METHODS: We targeted parents and other primary caregivers of Black children aged 8 years or younger awaiting a developmental or autism evaluation at an academic tertiary care hospital. Using a single-arm design, we recruited participants directly from the appointment waitlist and used flyers in local pediatric and subspecialty clinics. Eligible participants received a version of PTA adapted for Black children in two 6-week modules delivered synchronously online. In addition to initial baseline demographic data, we collected 4 standardized measures of parent stress and depression, family outcomes (e.g., advocacy), and child behavior at preintervention, midintervention, and postintervention. We calculated effect sizes and used linear mixed models to examine changes over time. RESULTS: Fifteen participants completed PTA, the majority of whom were Black mothers with annual household incomes <$50,000. All children were Black and mostly boys, with an average age of 4.6 years. Parent depression, the family outcome total score, and 3 family outcomes (understanding child's strengths, needs, and abilities; knowing rights and advocating for child; and helping child develop and learn) significantly improved pre-post intervention, with medium to large effect sizes. Furthermore, the family outcome total score and "knowing rights and advocating for child" outcome significantly increased by midintervention ( d = 0.62-0.80). CONCLUSION: Peer-delivered interventions can result in positive outcomes for families awaiting diagnostic evaluations. Further research is needed to confirm findings.

The diagnostic odyssey of autism: a cross-sectional study of 3 age cohorts of children from the 2016-2018 National Survey of Children's Health.

BACKGROUND: Autism prevalence has increased rapidly in recent years, however, nationally representative estimates on the ages of first identification and intervention are out of date. Objectives: (1) To estimate the ages at which children with autism receive their first diagnosis, intervention plan, and developmental services; and (2) To evaluate differences in ages at events by birth cohort and sociodemographic characteristics. METHODS: Using cross-sectional data from the 2016-2018 National Survey of Children's Health (NSCH), we examined associations via linear regression among a sample of 2303 children aged 2-17 years old, who had ever been diagnosed with autism and either (1) ever had a plan for special education or early intervention, or (2) ever received special services to meet developmental needs. Exposures included age cohort, child, household and healthcare provider characteristics. RESULTS: Most children in the study sample (n = 2303) were over age 6 years, male, of non-Hispanic white race/ethnicity and had mild/moderate autism. Mean ages (years) at first diagnosis was 4.56 (SE = 0.13); first plan was 4.43 (SE = 0.11); and first services was 4.10 (SE = 0.11). After adjustment for exposures and survey year, the middle childhood cohort was 18 months older at first intervention (ß = 1.49, 95% CI, 1.18-1.81), and adolescents were 38 months older at first diagnosis (ß = 3.16, 95% CI, 2.72-3.60) compared to those in early childhood. Younger ages at events were observed among: Hispanic/Latinx as compared to white children, those with moderate or severe symptoms as compared to mild symptoms, and children who received their diagnosis from a specialist as compared to psychologists or psychiatrists. CONCLUSIONS: Children with autism receive their first diagnosis, intervention plans and developmental services at younger ages than they had in the past. Future research is needed to identify the mechanisms for these improvements in early identification and intervention to accelerate additional progress.

First-Year Outcomes of Critical Congenital Heart Disease Screening in Maryland.

Objectives. Newborn screening for critical congenital heart disease (CCHD) was added to the Recommended Uniform Screening Panel in 2011, and states have been gradually adding pulse oximetry as point-of-care screening to panels. Few data are available on the effectiveness of pulse oximetry as a mandated screening. This study describes outcomes of the first year of screening in Maryland. Methods. A web-based data collection tool for screening results and outcomes, eScreener Plus, was utilized. Data collected from the start of screening from September 1, 2012, to December 31, 2013, were analyzed. Well-baby nursery data were evaluated separately from neonatal intensive care unit (NICU) data to determine whether setting influenced effectiveness. Results. In the first 15 months of newborn screening for CCHD in Maryland, 4 asymptomatic infants were diagnosed with a critical cardiac condition by newborn screening. Eleven infants passed but were later identified with a primary or secondary target condition. Seventy-one percent of infants with CCHD were identified prenatally or by clinical signs and symptoms. Pulse oximetry screening for CCHD had a specificity of more than 99% in both the well-baby nursery and the NICU. Sensitivity in the well-baby nursery was 10% and 60% in the NICU. Conclusion. Further investigation and interpretation of specific protocols that were used and outcomes of screening is needed for continued refinement of the well-baby algorithm and NICU protocol development. Pulse oximetry screening in newborns provides valuable clinical information, but many infants with CCHD are still not identified with current protocols.

Newborn Screening Long Term Follow-Up in the Medical Home.

This demonstration project explored the feasibility of utilizing data from pediatric primary care providers to evaluate the long-term outcomes of children with disorders identified by newborn screening (NBS). Compliance with national guidelines for care and the morbidity for this population was also examined. Primary care practices were recruited and patients with sickle cell disease or who were deaf/hard of hearing were given the opportunity to enroll in the study. Data were collected on the quality of the medical home with practice data compared to family responses. Clinical outcomes for each patient were assessed by review of medical records and patient surveys. These data sources were compared to determine accuracy of primary care data, morbidity, and receipt of preventive care. Electronic data sharing was explored through transmission of Clinical Document Architecture (CDA) files. Care coordination was a challenge, even in highly accredited medical homes. Providers did not have complete information regarding clinical outcomes and children were not consistently receiving recommended preventive care. Electronic data sharing with public health departments encountered interface challenges. Primary care providers in the USA should not currently be used as a sole source to evaluate long-term outcomes of children with disorders identified by NBS.