Health Care for Youth With Neurodevelopmental Disabilities: A Consensus Statement.

Individuals with a neurodevelopmental disability (NDD) face significant health care barriers, disparities in health outcomes, and high rates of foregone and adverse health care experiences. The Supporting Access for Everyone (SAFE) Initiative was developed to establish principles of health care to improve equity for youth with NDDs through an evidence-informed and consensus-derived process. With the Developmental Behavioral Pediatric Research Network, the SAFE cochairs convened a consensus panel composed of diverse professionals, caregivers, and adults with NDDs who contributed their varied expertise related to SAFE care delivery. A 2-day public forum (attended by consensus panel members) was convened where professionals, community advocates, and adults with NDDs and/or caregivers of individuals with NDDs presented research, clinical strategies, and personal experiences. After this, a 2-day consensus conference was held. Using nominal group technique, the panel derived a consensus statement (CS) on SAFE care, an NDD Health Care Bill of Rights, and Transition Considerations. Ten CSs across 5 topical domains were established: (1) training, (2) communication, (3) access and planning, (4) diversity, equity, inclusion, belonging, and anti-ableism, and (5) policy and structural change. Relevant and representative citations were added when available to support the derived statements. The final CS was approved by all consensus panel members and the Developmental Behavioral Pediatric Research Network steering committee. At the heart of this CS is an affirmation that all people are entitled to health care that is accessible, humane, and effective.

Optimizing Care for Autistic Patients in Health Care Settings: A Scoping Review and Call to Action.

OBJECTIVE: We conducted a scoping review of interventions designed to improve the health care experiences of autistic individuals and assessed the methodology and outcomes used to evaluate them. METHODS: Literature from January 2005 to October 2020 was searched using PubMed, Excerpta Medica dataBASE (EMBASE), Cumulated Index to Nursing and Allied Health Literature (CINAHL), PsycINFO as well as hand searching. Studies included described an intervention for autistic individuals in inpatient or outpatient settings and evaluated the intervention using standardized methodology. Results were exported to Covidence software. Ten reviewers completed abstract screening, full text review, and then systematic data extraction of the remaining articles. Two reviewers evaluated each article at each stage, with a third reviewer arbitrating differences. RESULTS: A total of 38 studies, including three randomized controlled trials (RCTs) were included. Twenty-six (68%) took place in dental, psychiatric, or procedural settings. Interventions primarily focused on visit preparation and comprehensive care plans or pathways (N = 29, 76%). The most frequent outcome was procedural compliance (N = 15), followed by intervention acceptability (N = 7) and parent satisfaction (N = 6). Two studies involved autistic individuals and caregivers in study design, and no studies assessed racial/ethnic diversity on intervention impact. CONCLUSIONS: Well-designed evaluations of interventions to support autistic individuals in pediatric health care settings are limited. There is a need to conduct large multi-site intervention implementation studies.

Lifetime Earning Potential and Workforce Distribution in Developmental and Behavioral Pediatrics.

OBJECTIVES: Compare lifetime earning potential (LEP) for developmental and behavioral pediatrics (DBP) to general pediatrics and other pediatric subspecialties. Evaluate association between LEP for DBP and measures of workforce distribution. METHODS: Using compensation and debt data from 2018 to 2019 and a net present value analysis, we estimated LEP for DBP compared to general pediatrics and other pediatric subspecialties. We evaluated potential effects of eliminating educational debt, shortening length of fellowship training, and implementing loan repayment or forgiveness programs for pediatric subspecialists. We evaluated the association between LEP for DBP and measures of workforce distribution, including distance to subspecialists, percentage of hospital referral regions (HRRs) with a subspecialist, ratio of subspecialists to regional child population, and fellowship fill rates. RESULTS: LEP was lower for DBP than for general private practice pediatrics ($1.9 million less), general academic pediatrics ($1.1 million less), and all other pediatric subspecialties. LEP of DBP could be improved by shortening fellowship training or implementing loan repayment or forgiveness programs. LEP for subspecialists, including DBP, was associated with distance to subspecialists (-0.5 miles/$100,000 increase in LEP, 95% confidence interval [CI] -0.98 to -0.08), percentage of HRRs with a subspecialist (+1.1%/$100,000 increase in LEP, 95% CI 0.37-1.83), ratio of subspecialists to regional child population (+0.1 subspecialists/100,000 children/$100,000 increase in LEP, 95% CI 0.04-0.17), and average 2014 to 2018 fellowship fill rates (+1% spots filled/$100,000 increase in LEP, 95% CI 0.25-1.65). CONCLUSIONS: DBP has the lowest LEP of all pediatric fields and this is associated with DBP workforce shortages. Interventions to improve LEP may promote workforce growth.

International Interprofessional Collaborative Office Rounds (iiCOR): Addressing Children's Developmental, Behavioral, and Emotional Health Using Distance Technology.

Developmental, behavioral, and emotional issues are highly prevalent among children across the globe. Among children living in low- and middle-income countries, these conditions are leading contributors to the global burden of disease. A lack of skilled professionals limits developmental and mental health care services to affected children globally. Collaborative Office Rounds are interprofessional groups that meet regularly to discuss actual cases from the participants' practices using a non-hierarchical, peer-mentoring approach. In 2017, International Interprofessional Collaborative Office Rounds was launched with several goals: to improve the knowledge and skills of practicing child health professionals in high and low resourced settings regarding developmental and mental health care, to support trainees and clinicians in caring for these children, and to promote best practice in diagnosis and management of these conditions. Five nodes, each comprised of 3-4 different sites with an interprofessional team, from 8 countries in North America, Africa, Asia, and South America met monthly via videoconferencing. This report describes and evaluates the first 2 years' experience. Baseline surveys from participants (N = 141) found that 13 disciplines were represented. Qualitative analysis of 51 discussed cases, revealed that all cases were highly complex. More than half of the cases (N = 26) discussed children with autism or traits of autism and almost all (N = 49) had three or more themes discussed. Frequently occurring themes included social determinants of health (N = 31), psychiatric co-morbidity (N = 31), aggression and self-injury (N = 25), differences with the healthcare provider (N = 17), cultural variation in accepting diagnosis or treatment (N = 19), and guidance on gender and sexuality issues (N = 8). Participants generally sought recommendations on next steps in clinical care or management. A survey of participants after year 1 (N = 47) revealed that 87% (N = 41) had expectations that were completely or mostly met by the program. Our experience of regular meetings of interprofessional groups from different countries using distance-learning technology allowed participants to share on overlapping challenges, meet continuing educational needs while learning about different approaches in high- and low-resourced settings. International Interprofessional Collaborative Office Rounds may prove a useful strategy for increasing the work force capacity for addressing developmental, behavioral, and emotional conditions worldwide. More systematic studies are needed.

A mixed-methods process evaluation of Family Navigation implementation for autism spectrum disorder.

There is growing interest in Family Navigation as an approach to improving access to care for children with autism spectrum disorder, yet little data exist on the implementation of Family Navigation. The aim of this study was to identify potential failures in implementing Family Navigation for children with autism spectrum disorder, using a failure modes and effects analysis. This mixed-methods study was set within a randomized controlled trial testing the effectiveness of Family Navigation in reducing the time from screening to diagnosis and treatment for autism spectrum disorder across three states. Using standard failure modes and effects analysis methodology, experts in Family Navigation for autism spectrum disorder (n = 9) rated potential failures in implementation on a 10-point scale in three categories: likelihood of the failure occurring, likelihood of not detecting the failure, and severity of failure. Ratings were then used to create a risk priority number for each failure. The failure modes and effects analysis detected five areas for potential "high priority" failures in implementation: (1) setting up community-based services, (2) initial family meeting, (3) training, (4) fidelity monitoring, and (5) attending testing appointments. Reasons for failure included families not receptive, scheduling, and insufficient training time. The process with the highest risk profile was "setting up community-based services." Failure in "attending testing appointment" was rated as the most severe potential failure. A number of potential failures in Family Navigation implementation-along with strategies for mitigation-were identified. These data can guide those working to implement Family Navigation for children with autism spectrum disorder.

Promoting optimal development: screening for behavioral and emotional problems.

By current estimates, at any given time, approximately 11% to 20% of children in the United States have a behavioral or emotional disorder, as defined in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. Between 37% and 39% of children will have a behavioral or emotional disorder diagnosed by 16 years of age, regardless of geographic location in the United States. Behavioral and emotional problems and concerns in children and adolescents are not being reliably identified or treated in the US health system. This clinical report focuses on the need to increase behavioral screening and offers potential changes in practice and the health system, as well as the research needed to accomplish this. This report also (1) reviews the prevalence of behavioral and emotional disorders, (2) describes factors affecting the emergence of behavioral and emotional problems, (3) articulates the current state of detection of these problems in pediatric primary care, (4) describes barriers to screening and means to overcome those barriers, and (5) discusses potential changes at a practice and systems level that are needed to facilitate successful behavioral and emotional screening. Highlighted and discussed are the many factors at the level of the pediatric practice, health system, and society contributing to these behavioral and emotional problems.

Need and unmet need for care coordination among children with mental health conditions.

OBJECTIVE: To determine prevalence and correlates of need and unmet need for care coordination in a national sample of children with mental health conditions. METHODS: Using data from the 2007 National Survey of Children's Health, we identified children aged 2 to 17 years with ≥1 mental health condition (attention-deficit/hyperactivity disorder, anxiety disorder, conduct disorder, or depression) who had received ≥2 types of preventive or subspecialty health services in the past year. We defined 2 outcome measures of interest: (1) prevalence of need for care coordination; and (2) prevalence of unmet need for care coordination in those with a need. Logistic regression models were used to estimate associations of clinical, sociodemographic, parent psychosocial, and health care characteristics with the outcome measures. RESULTS: In our sample (N = 7501, representing an estimated 5,750,000 children), the prevalence of having any need for care coordination was 43.2%. Among parents reporting a need for care coordination, the prevalence of unmet need was 41.2%. Higher risk of unmet need for care coordination was associated with child anxiety disorder, parenting stress, lower income, and public or no insurance. Parents reporting social support and receipt of family-centered care had a lower risk of unmet need for care coordination. CONCLUSIONS: Approximately 40% of parents of children with mental health conditions who reported a need for care coordination also reported that their need was unmet. Delivery of family-centered care and enhancing family supports may help to reduce unmet need for care coordination in this vulnerable population.

Epidemiology and management of infectious diseases in international adoptees.

International adoptees represent a group of children with unique health care needs. Data from published studies, along with the recent experience of the Yale International Adoption Clinic, suggest that the risk of serious infections in adoptees is low, although infections associated with institutionalization still occur commonly. Interpretation of these data must be undertaken with caution, however, since many, if not most, international adoptees are not evaluated in specialty clinics. Thus, prospective studies designed to minimize selection and referral bias are needed in order to accurately define the risk of infectious and noninfectious diseases in all international adoptees.

More evidence for reach out and read: a home-based study.

OBJECTIVE: Reach Out and Read (ROR), a clinic-based literacy program, has been shown to improve literacy outcomes in impoverished children. No study has used direct observation to assess a child's home literacy environment or to control for important confounders, such as the quality of the home environment. The objective of this study was to determine the relationship between the frequency of ROR encounters that a family receives during well-child visits and a child's home literacy profile, while accounting for important confounders, such as the quality of the home environment. METHODS: A cross-sectional study was conducted of 137 children (aged 18-30 months) who received pediatric well-child care at the Yale-New Haven Hospital Primary Care Center. The number of ROR encounters that the family received was determined though parent interview, direct observation, and a review of the medical record. After a brief waiting room interview, a home visit was conducted. An assessment of the child's home literacy environment was completed on the basis of 10 variables that were obtained from parent report and direct observation within the home. These variables were summed to form a Child Home Literacy Index. The Home Observation for Measurement of the Environment, a standardized measure of the nurturing quality of the home environment, was also administered. Hierarchical linear regression was conducted to determine the significance of ROR on a child's home literacy environment. RESULTS: A total of 100 families completed both a waiting room interview and a home visit. Families received between 0 and 6 books in the ROR program. A total of 93% of families reported reading to their children, but only 35% of parents identified reading as a favorite activity of their child and 45% of parents reported that this was a favorite joint activity. Hierarchical linear regression demonstrated that increasing frequency of ROR encounters contributed a small but significant portion of the variance explaining a child's home literacy profile (5%), with this model accounting for a total of 19% of the variance. CONCLUSIONS: A modest literacy intervention, such as ROR, can have a significant impact on a child's home literacy environment.