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Supplemental Security Income (SSI) expansions for disabled children in the early 1990s provoked criticism that eligibility criteria were too lax and motivated the subsequent retraction of benefits for many children. However, little evidence exists on whether the clinical needs of SSI children declined during this period. The authors used Medicaid data to examine changes in average expenditures between 1989 and 1992, using an Aid to Families with Dependent Children (AFDC) comparison group to control for confounding time trends (e.g., in access). Results showed declines in average expenditures in Georgia and Tennessee but increases in California and Michigan, which are thought to have started with more liberal eligibility policies.

To examine the role of psychological distress in accessing routine periodic health examinations among U.S. women of reproductive age, we examined data on 9,166 women aged 18-49 years from the 1998 National Health Interview Survey. In multivariate regression, women with psychological distress were more likely than non-distressed women to report delayed routine care, not having insurance, and lack of a usual source of care. Among women without a usual source of care, distressed women were more than six and one-half times more likely to delay care compared with non-distressed women. Women with psychological distress report delays in receiving routine care. EDITORS' STRATEGIC IMPLICATIONS: The findings suggest that, for distressed women in particular, continuity of care is vital in accessing routine care and obtaining timely and effective preventive services. [ABSTRACT FROM AUTHOR]

Background: Racial and ethnic disparities in health and health care have been well documented, but few studies have addressed how disparities may change over time.Objective: We sought to determine the change in relative rates over time of corticosteroid metered dose inhaler (MDI) use in minority and nonminority populations with asthma.Design and Setting: We used a cross-sectional survey for 5 periods of 2 years' each (1989-1990, 1991-1992, 1993-1994, 1995-1996, 1997-1998) using the National Ambulatory Medical Care Surveys (NAMCS).Participants: A total of 3671 visits by adults and children with asthma to U.S. office-based physicians comprised our sample.Main Outcome Measure: We sought to measure differences in inhaled corticosteroid use for minority and nonminority adults and children controlling for gender, specialty, U.S. region, and type of insurance.Results: Minority patients with asthma were less than half as likely as nonminority patients to have had a steroid MDI prescribed during 1989-1990. By 1995-1996, minority and nonminority patients with asthma were equally likely to have had a steroid MDI prescribed. Although differences between black and white patients resolved, differences between white and Hispanic patients persisted even after adjusting for insurance. Children initially were less likely than adults with asthma to have steroid MDI prescribed, and this difference persisted. Minority children had the greatest delay in adoption of steroid MDIs.Conclusion: Steroid MDIs diffused into minority and nonminority adult and child populations at different rates. [ABSTRACT FROM AUTHOR]

Background: Risk adjustment is useful for adjusting health care payments based on patients' health status.Objective: This work seeks to examine how well pharmacy- and diagnosis-based risk adjusters predict child health expenditures in Medicaid populations.Research Design: We used 1994-1995 Medicaid claims files for all children ages 0-18 years who were not covered by managed care in 3 states: Georgia, New Jersey, and Wisconsin. We examined separately 6 risk adjustment methods, 2 pharmacy-based and 4 diagnosis-based. We compared predictive accuracy of the methods for the whole sample and stratified by state and Medicaid enrollment category.Findings: Models with risk adjustment (either diagnosis- or pharmacy-based) had better predictive accuracy than demographic models. The pharmacy and diagnosis-based models had similar predictive accuracy. Risk adjuster performance differed by Medicaid enrollment category and state. Risk-adjusted models generally underpredict expenditures in populations with worse health status (eg, those in the Supplemental Security Income program [SSI]). The pharmacy-based models performed well for children in SSI relative to children in foster care.Conclusions: Both pharmacy- and diagnosis-based risk adjustment improved the prediction of health expenditures compared models without risk adjustment. No single risk adjuster performed best in all situations, suggesting that optimal choices of risk adjusters may differ by purpose and context. [ABSTRACT FROM AUTHOR]

OBJECTIVE: This study determined rates of breastfeeding advice given to African American and white women by medical providers and WIC nutrition counselors, and sought to determine whether racial differences in advice contributed to racial differences in rates of breastfeeding. METHODS: The study used data from the 1988 National Maternal and Infant Health Survey, a cross-sectional survey of a nationally representative sample of mothers with a live birth, infant death, or fetal death in 1988. The authors compared white women (n=3,966) and African American women (n=4,791) with a live birth in 1988 on self-reported rates of medical provider and WIC advice to breastfeed, WIC advice to bottlefeed, and breastfeeding. RESULTS: Self-reported racial identification did not predict medical provider advice. However, being African American was associated with less likelihood of breastfeeding advice and greater likelihood of bottlefeeding advice from WIC nutrition counselors. In multivariate analyses controlling for differences in advice, being African American was independently associated with lower breastfeeding rates (odds ratio [OR] = 0.41, 95% CI 0.32, 0.52). CONCLUSIONS: African American women were less likely than white women to report having received breastfeeding advice from WIC counselors and more likely to report having received bottlefeeding advice from WIC counselors. However, African American and white women were equally likely to report having received breastfeeding advice from medical providers. Lower rates of breastfeeding advice from medical or nutritional professionals do not account for lower rates of breastfeeding among African American women. [ABSTRACT FROM AUTHOR]

In a sample of Detroit-area mothers of preschool-aged children interviewed in 1986, one-third reported that child care problems had constrained their employment. Such reports were relatively prevalent among poor women, those without relatives nearby, and those willing to entrust the care of their children to nonfamily members. Only one-tenth of the sample reported a similar child care constraint on fertility, a phenomenon unrelated to income but relatively prevalent among women with strong labor force attachment. The results suggest that policies to increase the supply of child care or to lower its cost could increase female labor supply by a substantial fraction, with an even greater rise among women most at risk of poverty and reliance on public assistance, but probably would not raise fertility significantly. [ABSTRACT FROM AUTHOR]

OBJECTIVE: This study examines patterns of specialist use among children and adolescents by presence of a chronic condition or disability, insurance, and sociodemographic characteristics. DESIGN: Cross-sectional analysis of national survey data, describing rates of specialist use, with logistic regressions to examine associations with having a chronic condition or disability, insurance status, and sociodemographic variables. SETTING: The 1999 National Health Interview Survey, a nationally representative household survey. PARTICIPANTS: Children and adolescents 2 to 17 years old. OUTCOME: Parental/respondent reports of specialist visits based on reports of the child having seen or talked to a medical doctor who specializes in a particular medical disease or problem about the child's health during the last 12 months. RESULTS: Thirteen percent of US children were reported as seeing a specialist in the past year. Specialist-visit rates were twice as high for children with a chronic condition or disability (26% vs 10.2%). The specialist utilization rates for children without insurance were much lower than those for insured children, but among the children who have coverage (private, Medicaid, or other), specialist-utilization rates were similar (no statistically significant difference). Results of multivariate analyses predicting the use of specialists confirm the above-mentioned findings. Additionally, they show that use of specialist care was lower among children in the middle age group, minorities, children in families between 100% and 200% of the federal poverty level, and lower parental educational levels. We found no difference in specialist-visit rates between rural- and urban-dwelling children, by family status, or by gender. Differences in specialist use by gatekeeping status are found only among subgroups. CONCLUSIONS: The results showed that, overall, 13% of children used a specialist in a year. Among the insured, a slightly greater percentage of children used such care (15%). These numbers were slightly lower than the 18% to 28% of pediatric patients referred per year in 5 US health plans, although the sources of data and definitions of specialist use differ. Our results showed that 26% of children with a chronic condition or disability who were insured by Medicaid use a specialist. Although the data are not directly comparable, this is within the range of previous findings showing annual rates by condition of use between 24% and 59%. These findings are consistent also with greater use of many different types of health care by children with special health care needs. Medicaid-utilization rates presented here were similar also to the rates found among privately insured children and children with 'other' insurance. In our earlier work examining use of specialists by children insured by Medicaid, we speculated that Medicaid-insured children might face particular difficulty with access (eg, due to transportation or language barriers). The findings presented here suggest that children insured by Medicaid had no different use of specialists than other insured children. We do not know, however, whether similar rates are appropriate. As predicted, sociodemographic differences were pronounced and followed patterns typically found for use of health services. Lower rates of specialist use by non-Hispanic blacks and Hispanics remains even, controlling for chronic condition/disability, status, insurance, and socioeconomic status. This is an important issue that not only needs to be addressed in using specialist care but also in many areas in health care. It is the near poor who seem to have difficulty accessing care (as is evidenced by lower use of specialists). In a study of access to care, similar results were found, with those between 125% and 200% of the federal poverty level being less likely to have a usual source of care. This is roughly the population targeted by the State Children's Health Insurance Programs. These findings cannot determine whether rates of use are too high or too low. Additional work on outcomes for children who do and do not use specialist care would further inform the work presented here. Extending that work to examine patterns of care including but not limited to specialists and generalists would be even better. [ABSTRACT FROM AUTHOR]

Background: Fathers of children and youth with special healthcare needs (FCYSHCN) are an overlooked population at risk for chronic stress. Mind-body practices offer a patient-centered approach to foster coping and resiliency, yet low engagement from fathers in existing programs suggests adaptation is needed. This multiphase study examines the feasibility of a synchronous, virtual mind-body intervention adapted for FCYSHCN., Methods: 31 FCYSHCN were recruited online via community partners and recruitment portals in an academic medical center in Boston, MA. Phase 1 consisted of individual interviews (N = 17) to determine fathers' stressors, coping strategies, program needs, and suggested adaptations to the intervention protocol. The Phase 2 single arm pilot feasibility trial (N = 14) consisted of eight weekly 60-minute group sessions delivered virtually. Primary feasibility metrics were attendance (benchmark: mean=6 sessions) and electronic survey completion at baseline and post-intervention. Acceptability was assessed using post-session ratings of program satisfaction (4-point Likert scale; scores ≥3 coded as helpful) and helpfulness (e.g., group structure). Exploratory outcomes included validated measures of stress coping, resiliency, parental stress, depression, anxiety, which were analyzed using paired-samples t-tests (alpha=.05) to generate effect sizes (η2)., Results: In Phase 1, FCYSHCN discussed primary stressors (e.g., perceived inadequacy as a father) and multifaceted impacts of these stressors on physical, cognitive, emotional, and social wellbeing. Fathers also described coping strategies deemed helpful (e.g., humor) and unhelpful (e.g., "shutting down" from others). Qualitative findings informed intervention modifications. In Phase 2, most FCYSHCN (79%) attended ≥ 6 intervention sessions (mean=7). Follow-up survey completion was high (86%). Session satisfaction was high, with 7/8 sessions rated as helpful by most fathers. Program components deemed most helpful were the group structure, virtual delivery, exposure to a variety of relaxation and meditation skills, and the length of sessions. Although we were not powered to observe pre-post change, stress coping improved (p = .02, η2 = 0.42) and confidence increased in applying relaxation (p = .04, η2 = 0.34) and assertiveness techniques (p = .05, η2 = 0.31)., Conclusions: The first mind-body resiliency program for FCYSHCN is feasible and acceptable. Further testing is warranted in randomized trials with diverse samples of fathers, an appropriate comparison arm, and longitudinal assessments of psychosocial and biobehavioral outcomes., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Background: Despite modest mean body mass index (BMI) improvements in pediatric weight management interventions (PWMIs), some children are more and less successful in achieving a healthier weight. We sought to understand key behavior modifications and strategies used to overcome barriers that led to success or nonresponse. Methods: Using a semistructured guide, we conducted interviews in English and Spanish to explore the perspectives of caregivers whose children responded (BMI z-score change of greater than or equal to -0.2 units over 1 year) or did not respond (≥5% increase in % of the 95th percentile for BMI over 1 year) to a PWMI. Interviews were recorded, transcribed, and then coded using the framework approach. Researchers met regularly to review coding, content, and emerging themes. Results: We reached thematic saturation after interviewing the caregivers of 14 responders and 16 nonresponders and identified 7 themes as key elements of a positive response: (1) positive parenting approach; (2) application and practice of new information; (3) higher agency for change; (4) management of unmet social needs through creative solutions; (5) promoting mindful eating; (6) family alignment on health behaviors; and (7) mitigation of weight stigma. Conclusion: The effectiveness of PWMI may be enhanced by incorporating curricular elements that specifically promote the approaches identified among responders in this study. Similarly, lessons can be learned from nonresponders, so clinicians can identify and help early on when behaviors associated with nonresponse are seen. Clinical Trial Registration number: ClinicalTrials.gov: NCT03012126.

Anxiety is a common comorbidity for individuals with ASD, and there is some preliminary data about the efficacy of physical exercise to alleviate anxiety. However, we are not aware of any studies that have compared the effects of a physical exercise program on anxiety in underserved children with ASD using a randomized controlled research design. This paper describes a method to evaluate and compare the efficacy of an 8-week physical exercise intervention with a sedentary play intervention to alleviate anxiety in young children with autism spectrum disorders (ASD) from underserved backgrounds. We assessed anxiety and its physical symptoms using the parent-rated Child Behavior Checklist DSM-5 anxiety (CBCL DSM-5) subscale, the child-rated Screen for Childhood Anxiety Related Emotional Disorder (SCARED), the parent-rated Child's Sleep Habits Questionnaire (CSHQ), and salivary cortisol. We also utilized the Physical Activity Questionnaire for Older Children (PAQ-C) to assess physical activity level and identify compounds. Unique components of this study include: •Implementation of novel physical exercise and sedentary play interventions that have been designed for children with ASD.•Recruitment of predominantly underserved and non-English speaking families., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2023 The Author(s).)

Objective: To assess the number of days that children experienced a health care encounter and associations between chronic condition types and health care encounters., Methods: Retrospective analysis of data from 5,082,231 children ages 0 to 18 years enrolled in Medicaid during 2017 in 12 US states contained in the IBM Watson Marketscan Medicaid Database. We counted and categorized enrollees' encounter days, defined as unique days a child had a health care visit, by type of health service. We used International Classification of Disease-10 diagnosis code categories from Agency for Healthcare Research and Quality's Chronic Condition Indicator System to identify chronic mental and physical health conditions., Results: Median (interquartile range [IQR]) annual encounter days was 6 (2-13). Children in the 91st to 98th and ≥99th percentiles for encounter days experienced a median of 49 (IQR 38-70) and 229 (IQR 181, 309) days, respectively; these children accounted for 52.6% of days for the cohort. As encounter days increased from the 25th to >90th percentile, the percentage of children with co-existing mental and physical health conditions increased from <0.1% to 47.4% (P < .001). Outpatient visits accounted for a total of 68.3% and 62.2% of days for children the 91st to 98th and ≥99th percentiles., Conclusion: Ten percent of children enrolled in Medicaid averaged health care encounters at least 1 day per week; 1% experienced health care encounters on most weekdays. Further investigation is needed to understand how families perceive frequent health care encounters, including how to facilitate their children's care in the most feasible way., (Copyright © 2022 Academic Pediatric Association. All rights reserved.)

By understanding health conditions, impairments, and impact on quality of life for pediatric feeding disorders, assessment and treatment approaches can target multiple levels of health-related domains that improve child health and well-being. The purpose of this study was to characterize medical diagnoses and feeding impairments for children with feeding disorders; examine child quality of life and caregiver impact; and compare quality of life differences between children with feeding disorders and children with other conditions. A cross-sectional study was conducted in the Greater Boston Area, between October 2017 and June 2018. Fifty children with a feeding disorder diagnosis, ages 2-5 years, were enrolled. Demographic and clinical data were abstracted from the electronic health record to characterize medical diagnoses and impairments. Parents completed the Pediatric Quality of Life Generic Core Scales 4.0 (PedsQL) and the Feeding/Swallowing Impact Survey (FS-IS) to understand child quality of life and caregiver impact. We calculated descriptive statistics across the medical diagnosis and impairment groups, and for the surveys. Children presented with heterogeneous medical diagnoses and feeding impairments. We found a mean (SD) total score of 72.82(19.21) on the PedsQL and 2.33(0.89) on the FS-IS demonstrating that children with feeding disorders presented with poor quality of life and their caregivers were negatively impacted by their feeding difficulties. By understanding medical diagnoses, impairments, and quality of life, assessment and treatment methods can be tailored to children's specific needs, as well as address the overall wellbeing of children and their families., (© 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Teenage siblings of children with autism spectrum disorder (ASD) are at risk of worse mental health outcomes than their peers, yet there have been few interventions focused on improving their psychosocial wellbeing. This study explored the acceptability of an 8-session virtual group mind-body resiliency intervention for teen siblings of children with ASD. We used mixed methods to assess quantitative and qualitative survey results. Participants reported that the intervention had the right amount of sessions (88%), structure (74%), and duration (89%). Most participants felt comfortable during sessions (74%), found it helpful to learn mind-body exercises (74%), and that the intervention helped in coping with stress (71%). Though participants were satisfied with the opportunity to meet peers, they desired more social connection., (© 2022. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Background: Multi-sector stakeholder engagement is essential in the successful implementation, dissemination, and sustainability of pediatric weight management interventions (PWMI), particularly in low-income settings where sustainability relies on external policies and reimbursement. The objective of this study was to engage stakeholders (1) to inform the creation of the intervention with adaptations needed for a successful PWMI in a primary care and community setting and (2) to identify barriers and facilitators to implementation and dissemination., Methods: We sought to examine the perspectives of local, state, and national clinic and community stakeholders during the pre-implementation period of a two-arm, randomized trial of a Health Weight Clinic PWMI conducted in two health centers and a modified-Healthy Weight and Your Child PWMI at two local YMCAs that serve a predominantly lower income, Hispanic community. The Consolidated Framework for Implementation Research interview guide served as a template for the study but was modified to fit the PWMIs and the various professional roles. Interviews were transcribed and analyzed using the framework analysis approach and themes were linked to the CFIR domains and constructs., Results: Twenty-six stakeholders perceived the following as needed components of a PWMI: a formal curriculum with illustrative examples, a patient- and family-centered program, group visits, and high-quality multidisciplinary personnel. These findings led to the creation of a group visit curriculum, implementation trainings and cross-site collaborative technical assistance. Additionally, creating partnerships between community and clinical organizations, and addressing patient barriers and unmet social needs (i.e., transportation, food) were identified as facilitators to successful implementation. These results led to the creation of community resource guides, connections to community organizations, and screening and referring for unmet social needs. Perceived facilitators of dissemination included proving cost-effectiveness of the PWMI to inform insurance reimbursement for long-term sustainability. Therefore, we collected cost data and engaged with Medicaid officials to discuss reimbursement., Conclusion: Findings highlight the importance of engaging multi-sector stakeholders pre-implementation to ensure the components valued are included, ensuring the program minimizes barriers to participation, considering how staff training can improve implementation and how collected outcomes can inform sustainability and dissemination of PWMIs in clinic and community settings., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2022 Persaud, Castro, Simione, Smith, O'Connor, Sharifi, Perkins, Torres, Taveras, Kuhlthau and Fiechtner.)

Background and Objective: Hospitalizations for children with complex chronic conditions (CCC) at pediatric hospitals have risen over time. Little is known about what hospital types, pediatric or adult, adolescents, and young adults (AYA) with CCCs use. We assessed the types of hospitals used by AYAs with CCCs., Methods: We performed a cross-sectional study of 856,120 hospitalizations for AYAs ages 15-to-30 years with ≥1 CCC in the 2017 National Inpatient Sample. We identified AYA with CCC by ICD-10-CM diagnosis codes using the pediatric CCC classification system version 2. Hospital types included pediatric hospitals (n = 70), adult hospitals with pediatric services (n = 277), and adult hospitals without pediatric services (n = 3975). We analyzed age trends by hospital type and CCC count in 1-year intervals and dichotomously (15-20 vs 21-30 years) with the Cochran-Armitage test., Results: The largest change in pediatric hospitals used by AYA with CCCs occurred between 15 and 20 years with 39.7% versus 7.7% of discharges respectively (P< 0.001). For older AYA (21 to 30 years), 1.0% of discharges occurred at pediatric hospitals, compared with 65.6% at adult hospitals without pediatric services (P < 0.001). Older AYA at pediatric hospitals had more technology dependence (42.5%) versus younger AYA (27.6%, p < 0.001)., Conclusions: Most discharges for AYAs ≥21 years with CCCs were from adult hospitals without pediatric services. Higher prevalence of technology dependence and neuromuscular CCCs, as well as multiple CCCs, for AYA 21-to-30 years discharged from pediatric hospitals may be related to specific care needs only found in pediatric settings and challenges transferring into adult hospital care., (Copyright © 2021 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Adolescent and young adult (AYA) siblings of individuals with autism experience unique challenges that can promote both growth and emotional maladjustment. This study explored sibling and parent reports of siblings' lived experiences and identified learning, stressors, and concerns from those experiences. 20 neurotypical (NT) AYA siblings (ages 13-24), and 21 parents were interviewed. Themes that emerged from the data analysis included: (1) learning, empathy, and compassion (2) relationship between the degree of functional impairment and the nature of the sibling relationship; (3) reluctance to share information about siblings with peers; (4) hypervigilance associated with unpredictable behavior; (5) worries and concerns about the future. These findings contribute to the existing literature on the impact and nature of neurotypical siblings' lived experience., (© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Background: Medical financial burden includes material, behavioral, and psychological hardship and has been underinvestigated among adult survivors of childhood cancer., Methods: A survey from 698 survivors and 210 siblings from the Childhood Cancer Survivor Study was analyzed. The intensity of financial hardship was estimated across 3 domains: 1) material, including conditions that arise from medical expenses; 2) behavioral, including coping behaviors to manage medical expenses; and 3) psychological hardship resulting from worries about medical expenses and insurance, as measured by the number of instances of each type of financial hardship (0, 1-2, and ≥3 instances). Multivariable logistic regressions were conducted to examine the clinical and sociodemographic predictors of experiencing financial hardship (0-2 vs ≥3 instances)., Results: The intensity of financial hardship did not significantly differ between survivors and siblings. Survivors reported more instances of material hardship than siblings (1-2 instances: 27.2% of survivors vs 22.6% of siblings; ≥3 instances: 15.9% of survivors vs 11.4% siblings; overall P = .03). In multivariable regressions, insurance was protective against all domains of financial hardship (behavioral odds ratio [OR], 0.12; 95% confidence interval [CI], 0.06-0.22; material OR, 0.37; 95% CI, 0.19-0.71; psychological OR, 0.10; 95% CI, 0.05-0.21). Survivors who were older at diagnosis, female, and with chronic health conditions generally had higher levels of hardship. Brain radiation and alkylating agents were associated with higher levels of hardship., Conclusions: Material, behavioral, and psychological financial burden among survivors of childhood cancer is common., (© 2021 American Cancer Society.)

Objective: Using standardized screening tools increases accuracy in early identification of autism. The American Academy of Pediatrics recommends systematic developmental screening at all 9-, 18-, and 24- or 30-month well-child visits (WCVs) and autism-specific screening at all 18- and 24-month WCVs. The study objectives were to examine the extent to which these guidelines have been adopted in practice among primary care providers (PCPs) and to identify potential provider-level factors associated with screening practices., Method: Participants included 94 PCPs (79% pediatricians) from 13 states enrolled in a study of an autism training program. Self-report and chart-review data collected before training were examined. Screening practices were assessed through chart review of all 9-, 18-, and 24-month WCVs within a 30-day window., Results: Sixty-four percent of PCPs administered developmental screening tools at all 9-month WCVs, and 62% at all 18-month WCVs. Fifty-one percent administered autism screening tools at all 18-month WCVs, and 41% at all 24-month WCVs. Screening practices varied by provider type (pediatrician vs other PCP), self-efficacy in screening and identification, and previous autism training (autism screening only), but not by years of experience., Conclusion: Overall, general developmental and autism-specific screenings are not being consistently administered across recommended WCVs in primary care practices. Provider self-efficacy in autism identification and screening and previous autism training were associated with increased autism screening. As such, these results suggest a need for increased training and dissemination of information on screening implementation for practicing PCPs., Competing Interests: Disclosure: The authors declare no conflict of interest., (Copyright © 2021 Wolters Kluwer Health, Inc. All rights reserved.)

Objective: Despite their complex health care needs, transition-aged youth diagnosed with autism spectrum disorder (TAY-ASD) receive few transition services and describe difficulty finding adult providers. A 12-week primary care provider (PCP) training was developed to improve the delivery of transition services for TAY-ASD [Extension for Community Healthcare Outcomes (ECHO) Autism: Transition to Adulthood program]. The current study examines the PCPs' perspectives and experiences of the program and application of the training material., Methods: This study used a qualitative descriptive framework to explore the experiences and perspectives of 10 PCPs who completed the ECHO Autism: Transition to Adulthood program. Semistructured focus groups, conducted through Zoom videoconferencing, were used to explore these topics., Results: Three overarching categories were identified: (1) beneficial and influential aspects of the ECHO, (2) perceived challenges, and (3) suggestions for improvements and adjustments. Overall, participants found the program highly beneficial, describing an increased sense of community and comprehensive recommendations from a multidisciplinary team. Challenges included difficulties participating in the program during clinical hours and difficulties meeting the educational needs of participants with a wide range of previous experience caring for TAY-ASD. Recommendations included embedding the location-specific material into the program to account for regional differences and the use of an online platform for participants to ask questions and discuss issues outside of the regular sessions., Conclusion: The study results can inform the development and implementation of new virtual PCP trainings and future ECHOs, including the revision and broad implementation of the ongoing ECHO Autism: Transition to Adulthood program., Competing Interests: Disclosure: The authors declare no conflict of interest., (Copyright © 2020 Wolters Kluwer Health, Inc. All rights reserved.)

Developmental disabilities (DDs) are prevalent and associated with health disparities among children. Family health literacy of parents and/or children is one modifiable factor associated with child health; however, little is known about family health literacy for children with DDs. This systematic review was conducted to determine evidence on associations of health literacy with health outcomes among children with DDs. Medline, CINAHL, Embase, ERIC, PsycInfo, and Web of Science were searched through August 2018. Of 2,768 unique records, 53 full text articles were reviewed and four articles were included. Associations of family health literacy with health outcomes among children with DDs were mixed. Future research should include more diverse samples, greater breadth in health outcomes assessed, and increased methodological rigor., (©AAIDD.)

Objective: Parents of children with special needs such as learning and attentional disabilities (LADs) and autism spectrum disorder (ASD) are at high risk for stress-related disorders. The demands of parenting may compete with time for self-care behaviors such as physical activity, healthy eating, and adequate sleep. The objective was to describe health behaviors among this understudied population and assess the changes after a resilience intervention., Methods: This was a secondary data analysis of a randomized controlled pilot virtual mind-body resilience intervention (Stress Management and Resiliency Training: A Relaxation Response Resiliency Program) trial for parents of children with LADs (n = 52) and ASD (n = 47). Parents completed self-report questionnaires about their weekly physical activity, eating behaviors, sleep duration, and fatigue before and after the 8-week intervention. Descriptive statistics and pre-post intervention effect sizes (Cohen's d) were calculated., Results: Both parent groups reported suboptimal levels of health behaviors at baseline, but ASD parents reported lower health behaviors than LAD parents. LAD parents improved more on physical activity, with a higher percentage meeting recommendations at postintervention follow-up (d = 0.71) than ASD parents (d = 0.01). Eating behaviors showed small effect size improvements for both groups. Although sleep duration improved only with small or medium effect sizes for both groups, ASD parents rated their fatigue lower after the intervention (d = 0.81)., Conclusion: Parents of children with special needs who participated in a virtual resilience intervention demonstrated suboptimal health behaviors. There is a need for targeted interventions for health behaviors that can promote resilience in these high-stress populations.

A mixed methods approach was used to examine perspectives of 114 primary care providers regarding barriers and needs for support in caring for children with autism. The most common barriers related to lack of knowledge and resources for diagnosing and treating children with autism, and inadequate visit time and reimbursement., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Importance: The Extension for Community Health Outcomes (ECHO) model is a widely adopted technology-based model for training primary care physicians and practitioners (PCPs) to care for patients with complex conditions. Despite its popularity, to our knowledge, direct effects of ECHO on clinical practice have not been tested in a large-scale study., Objective: To test the effectiveness of the ECHO model as applied to primary care for autism and whether it resulted in improved clinical practice, knowledge, and self-efficacy regarding autism screening and comorbidity management., Design, Setting, and Participants: Primary care physicians and practitioners were recruited to participate in a 6-month ECHO Autism program delivered by 1 of 10 academic medical center sites. A sequential, staggered rollout of ECHO Autism was delivered to 5 cohorts of participants (15 per site; 2 sites per cohort). Sites were randomized after recruitment to cohort/start time. Cohorts launched every 3 months. The ECHO Autism program used videoconferencing technology to connect community-based PCPs with interdisciplinary expert teams at academic medical centers. There were 148 participants (PCPs [family practice physicians, pediatricians, nurse practitioners, and physician assistants] providing outpatient services to underserved children) studied between December 2016 and November 2018., Interventions: The 6-month ECHO Autism program included twelve 2-hour sessions connecting PCP participants with an interdisciplinary expert team. Sessions included didactics, case-based learning, guided practice, and discussion., Main Outcomes and Measures: Coprimary outcomes were autism screening practices and comorbidity management (assessed by medical record review). Secondary outcomes were knowledge (assessed by direct testing) and self-efficacy (assessed by self-report survey). Assessments were conducted at baseline, mid-ECHO, post-ECHO, and follow-up (3 months after ECHO)., Results: Ten sites were randomized to 1 of 5 cohorts. Participants were 82% female (n = 108), 76% white (n = 100), and 6% Hispanic or Latino (n = 8); the median age was 46 years (interquartile range, 37-55 years). Significant changes in autism screening and treatment of comorbidities in children with autism were not observed. Participants demonstrated significant improvements in knowledge (9%; 95% CI, 4-13; P < .001) and self-efficacy (29%; 95% CI, 25-32; P < .001)., Conclusions and Relevance: The ECHO model was developed to increase access to high-quality health care for underserved patients with complex conditions. Study results provide support for the model in improving clinician knowledge and confidence but little support for achieving practice change., Trial Registration: ClinicalTrials.gov Identifier: NCT03677089.

Transition-age youth and young adults with autism spectrum disorder have complex healthcare needs, yet the current healthcare system is not equipped to adequately meet the needs of this growing population. Primary care providers lack training and confidence in caring for youth and young adults with autism spectrum disorder. The current study developed and tested an adaptation of the Extension for Community Healthcare Outcomes model to train and mentor primary care providers ( n = 16) in best-practice care for transition-age youth and young adults with autism spectrum disorder. The Extension for Community Healthcare Outcomes Autism Transition program consisted of 12 weekly 1-h sessions connecting primary care providers to an interdisciplinary expert team via multipoint videoconferencing. Sessions included brief didactics, case-based learning, and guided practice. Measures of primary care provider self-efficacy, knowledge, and practice were administered pre- and post-training. Participants demonstrated significant improvements in self-efficacy regarding caring for youth/young adults with autism spectrum disorder and reported high satisfaction and changes in practice as a result of participation. By contrast, no significant improvements in knowledge or perceived barriers were observed. Overall, the results indicate that the model holds promise for improving primary care providers' confidence and interest in working with transition-age youth and young adults with autism spectrum disorder. However, further refinements may be helpful for enhancing scope and impact on practice.

Objectives: In this study, we sought to establish priorities for a national research agenda for children and youth with special health care needs (CYSHCN) through a structured, multistakeholder, mixed-methods approach., Methods: Using surveys, we solicited responses from >800 members of expert-nominated stakeholder organizations, including CYSHCN families, health care providers, researchers, and policymakers, to identify what research with or about CYSHCN they would like to see in a national research agenda. From 2835 individual free-text responses, 96 research topics were synthesized and combined. Using an adapted RAND/UCLA Appropriateness Method (a modified Delphi approach), an expert panel rated research topics across 3 domains: need and urgency, research impact, and family centeredness. Domains were rated on 9-point Likert scales. Panelist ratings were used to sort research topics into 4 relative-priority ranks. Rank 1 (highest priority) research topics had a median of ≥7 in all domains., Results: The RAND/UCLA Appropriateness Method was used to prioritize CYSHCN research topics and depict their varying levels of stakeholder-perceived need and urgency, research impact, and family centeredness. In the 15 topics that achieved rank 1, social determinants of health (disparities and rurality), caregiving (family resilience and care at home), clinical-model refinement (effective model elements, labor divisions, telemedicine, and system integration), value (stakeholder-centered value outcomes, return on investment, and alternative payment models), and youth-adult transitions (planning, insurance, and community supports) were emphasized., Conclusions: High-priority research topics identified by CYSHCN experts and family leaders underscore CYSHCN research trends and guide important directions. This study is the first step toward an efficient and cohesive research blueprint to achieve highly-effective CYSHCN health systems., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2020 by the American Academy of Pediatrics.)

Objective: A child's pediatric intensive care unit (PICU) admission may have wide-ranging family implications. We assessed nonmedical out-of-pocket expenses (NMOOPEs) and disruptions in work and normal life for parents with a child admitted to the PICU for at least 2 days with acute, new onset, or exacerbation of a critical condition., Design: We conducted a prospective, single-center study; administered a daily verbal response survey on NMOOPEs; stratified families by annual income (<$50 999, $51-99 000, >$100 000); and calculated daily expenditures (DEs), estimated daily budgets (DBs), and percentage of NMOOPEs (%DE/DB). We used a modified caregiver version of the Work Productivity and Activity Impairment Scale to assess the impact of PICU admission on work-related and normal life activities., Setting: The PICU in an academic, tertiary medical center in the United States., Patients: Patients admitted to PICU., Interventions: None., Measurements and Main Results: The study included 38 families, with median length of PICU stay of 3 days (range 3-13). The mean total NMOOPE was $127 ± $107 (range $5-$511). Financial impact of DB in the 3 annual income groups ranged from 0% to 136% (median 36%), 5% to 18% (median 10%), and 4% to 39% (median 16%), respectively. Total work absenteeism for cohort was 78 days. High levels of distraction were reported in working families, and normal daily activities were interrupted or suspended., Conclusions: PICU hospitalization results in a range of direct NMOOPEs of varying burden on families and additional work productivity impact. Further research to understand the array of financial implications on families and additional mitigation strategies are needed.

Compared to the social communication domain, considerably less is known about the cause, development, and impact of restricted, repetitive behaviors interests and activities in children with autism spectrum disorder, including possible sex differences. This study examined sex differences in clinically identified (Autism Diagnostic Observation Schedule) restricted and repetitive behavior symptoms using the largest known sample (N = 1024) of age-matched and intelligence quotient-matched female and male children with autism spectrum disorder. More similarities than differences were observed; however, younger higher functioning and older lower functioning females presented reduced rates on the Autism Diagnostic Observation Schedule restricted and repetitive behavior subcategory unusually repetitive/excessive, stereotyped behaviors compared to similar males. These findings identify key restricted and repetitive behavior similarities and differences among young females and males with autism spectrum disorder and emphasize the need for a deeper understanding of the female autism phenotype.

Purpose: Survivors of childhood cancer require life-long outpatient healthcare, which may be impacted by health insurance. This study sought to understand survivors' utilization of outpatient healthcare provider services., Methods: The study examined cross-sectional survey data using an age-stratified sample from the Childhood Cancer Survivor Study of self-reported annual use of outpatient services. Multivariable logistic regression analyses were used to identify risk factors associated with utilization of services., Results: Six hundred ninety-eight survivors were surveyed, median age 36.3 years (range 22.2-62.6), median time from diagnosis 28.8 years (range 23.1-41.7). Almost all (93%) of survivors had at least one outpatient visit during the previous year; 81.3% of these visits were with a primary care providers (PCP), 54.5% were with specialty care physicians, 30.3% were with nurse practitioner/physician's assistants (NP/PA), and 14.2% were with survivorship clinic providers. Survivors with severe to life-threatening chronic health conditions had greater odds of utilizing a specialty care physician (OR = 5.15, 95% CI 2.89-9.17) or a survivorship clinic (OR = 2.93, 95% CI 1.18-7.26) than those with no chronic health conditions. Having health insurance increased the likelihood of seeking care from NP/PA (private, OR = 2.76, 95% CI 1.37-5.58; public, OR = 2.09, 95% CI 0.85-5.11), PCP (private, OR = 7.82, 95% CI 3.80-13.10; public, OR = 7.24, 95% CI 2.75-19.05), and specialty care (private, OR = 2.96, 95% CI 1.48-5.94; public, OR = 2.93, 95% CI 1.26-6.84) compared to without insurance., Conclusion: Most childhood cancer survivors received outpatient care from a PCP, but a minority received care from a survivorship clinic provider. Having health insurance increased the likelihood of outpatient care., Implications for Cancer Survivors: Targeted interventions in the primary care setting may improve risk-based, survivor-focused care for this vulnerable population.

Importance: Cancer survivors face ongoing health issues and need access to affordable health care, yet studies examining health care access and affordability in this population are lacking., Objectives: To evaluate health care access and affordability in a national sample of cancer survivors compared with adults without cancer and to evaluate temporal trends during implementation of the Affordable Care Act., Design, Setting, and Participants: We used data from the National Health Interview Survey from 2010 through 2016 to conduct a population-based study of 30 364 participants aged 18 years or older. We grouped participants as cancer survivors (n = 15 182) and those with no reported history of cancer, whom we refer to as control respondents (n = 15 182), matched on age. We excluded individuals reporting a cancer diagnosis prior to age 18 years and those with nonmelanoma skin cancers., Main Outcomes and Measures: We compared issues with health care access (eg, delayed or forgone care) and affordability (eg, unable to afford medications or health care services) between cancer survivors and control respondents. We also explored trends over time in the proportion of cancer survivors reporting these difficulties., Results: Of the 30 364 participants, 18 356 (57.4%) were women. The mean (SD) age was 63.5 (23.5) years. Cancer survivors were more likely to be insured (14 412 [94.8%] vs 13 978 [92.2%], P < .001) and to have government-sponsored insurance (7266 [44.3%] vs 6513 [38.8%], P < .001) compared with control respondents. In multivariable models, cancer survivors were more likely than control respondents to report delayed care (odds ratio [OR], 1.38; 95% CI, 1.16-1.63), forgone medical care (OR, 1.76; 95% CI, 1.45-2.12), and/or inability to afford medications (OR, 1.77; 95% CI, 1.46-2.14) and health care services (OR, 1.46; 95% CI, 1.27-1.68) (P < .001 for all). From 2010 to 2016, the proportion of survivors reporting delayed medical care decreased each year (B = 0.47; P = .047), and the proportion of those needing and not getting medical care also decreased each year (B = 0.35; P = .04). In addition, the proportion of cancer survivors who reported being unable to afford prescription medication decreased each year (B=0.66; P = .004) and the proportion of those unable to afford at least 1 of 6 services decreased each year (B = 0.51; P = .01)., Conclusions and Relevance: Despite higher rates of insurance coverage, cancer survivors reported greater difficulties accessing and affording health care compared with adults without cancer. Importantly, the proportion of survivors reporting these issues continued a downward trend throughout our observation period in the years following the implementation of the Affordable Care Act. Our findings suggest incremental improvement in health care access and affordability after recent health care reform and provide an important benchmark as additional changes are likely to occur in the coming years.

Importance: Childhood cancer survivors may be reluctant to make changes in their employment because of access to health insurance., Objective: To examine the prevalence of "job lock" (staying at a job to keep work-related health insurance) in a sample drawn from an established, multi-institutional cohort of full-time employed childhood cancer survivors compared with a random sample of siblings and to explore factors associated with job lock among cancer survivors., Design, Setting, and Participants: Cross-sectional survey of full-time employed adult survivors of childhood cancer and a random sample of siblings derived from a cohort of 25 US pediatric oncology centers., Exposures: Data collection included sociodemographic factors, insurance coverage, chronic medical conditions, and treatment., Main Outcomes and Measures: Self-report of job lock and factors associated with job lock., Results: Among the 522 participants, 394 were cancer survivors (54.5% male) and 128 were siblings (51.5% male). Job lock was reported by 23.2% (95% CI, 18.9%-28.1%) of survivors, compared with 16.9% (95% CI, 11.1%-25.0%) of siblings (P = .16). Job lock was more common among survivors reporting previous health insurance denial (relative risk [RR], 1.60; 95% CI, 1.03-2.52) and problems paying medical bills (RR, 2.43; 95% CI, 1.56-3.80). Among survivors, being female (RR, 1.70; 95% CI, 1.11-2.59; P = .01) and having a severe, disabling, or life-threatening health condition (RR, 1.72; 95% CI, 1.09-2.69; P = .02) were associated with job lock., Conclusions and Relevance: Job lock is common among long-term childhood cancer survivors who are employed full-time. A survivor's decision to remain employed at a job in order to maintain health insurance coverage may affect career trajectory, diminish potential earning power, and ultimately impact quality of life.

Background: Recent studies have demonstrated the effectiveness of family-centered, pediatric weight management programs in reducing childhood obesity. Yet, programs to optimize the care of low-income children with obesity are needed. We sought to examine the comparative effectiveness of two, potentially scalable pediatric weight management programs delivered to low-income children in a clinical or community setting., Materials and Methods: The Clinic and Community Approaches to Healthy Weight Trial is a randomized trial in two communities in Massachusetts that serve a large population of low-income children and families. The two-arm trial compares the effects of a pediatric weight management program delivered in the Healthy Weight Clinics of two federally qualified health centers (FQHC) to the Healthy Weight and Your Child programs delivered in two YMCAs. Eligible children are 6 to 12 years old with a body mass index (BMI) ≥ 85th percentile seen in primary care at the two FQHCs. Both programs are one-year in duration and have at least 30 contact hours throughout the year. Measures are collected at baseline, 6 months, and 1 year. The main outcome is 1-year change in BMI (kg/m 2 ) and percent change of the 95th percentile (%BMIp 95 )., Conclusion: The Clinic and Community Approaches to Healthy Weight Trial seeks to 1) examine the comparative effects of a clinical and community based intervention in improving childhood obesity, and 2) inform the care of >7 million children with obesity covered by the Children's Health Insurance Program or Medicaid., (Copyright © 2018 Elsevier Inc. All rights reserved.)