What Types of Hospitals Do Adolescents and Young Adults With Complex Chronic Conditions Use?

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.

Provider Perspectives on the Extension for Community Healthcare Outcomes Autism: Transition to Adulthood Program.

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.

Health Literacy and Health Outcomes Among Children With Developmental Disabilities: A Systematic Review.

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.

Families' Experiences With Family Navigation Services in the Autism Treatment Network.

BACKGROUND AND OBJECTIVES: Families of children with autism spectrum disorder (ASD) often experience challenges navigating multiple systems to access services. Family navigation (FN) is a model to provide information and support to access appropriate services. Few studies have been used to examine FN's effectiveness for families of children with ASD. This study used mixed methods to (1) characterize FN services received by a sample of families in the Autism Treatment Network; (2) examine change in parent-reported activation, family functioning, and caregiver strain; and (3) explore families' experiences with FN services. METHODS: Family characteristics and parent outcomes including parent activation, family functioning, and caregiver strain were collected from 260 parents in the Autism Treatment Network. Descriptive statistics and linear mixed models were used for aims 1 and 2. A subsample of 27 families were interviewed about their experiences with FN services to address aim 3. RESULTS: Quantitative results for aims 1 and 2 revealed variability in FN services and improvement in parent activation and caregiver strain. Qualitative results revealed variability in family experiences on the basis of FN implementation differences (ie, how families were introduced to FN, service type, intensity, and timing) and whether they perceived improved skills and access to resources. CONCLUSIONS: Findings suggest FN adaptations occur across different health care delivery systems and may result in highly variable initial outcomes and family experiences. Timing of FN services and case management receipt may contribute to this variability for families of children with ASD.

Healthcare access and adverse family impact among U.S. children ages 0-5 years by prematurity status.

BACKGROUND: Many children and their families are affected by premature birth. Yet, little is known about their healthcare access and adverse family impact during early childhood. This study aimed to (1) examine differences in healthcare access and adverse family impact among young children by prematurity status and (2) determine associations of healthcare access with adverse family impact among young children born prematurely. METHODS: This was a secondary analysis of cross-sectional 2016 and 2017 National Survey of Children's Health data. The sample included 19,482 U.S. children ages 0-5 years including 242 very low birthweight (VLBW) and 2205 low birthweight and/or preterm (LBW/PTB) children. Prematurity status was defined by VLBW (i.e., < 1500 g at birth) and LBW/PTB (i.e., 1500-2499 g at birth and/or born at < 37 weeks with or without LBW). Healthcare access measures were adequate health insurance, access to medical home, and developmental screening receipt. Adverse family impact measures were ≥ $1000 in annual out-of-pocket medical costs, having a parent cut-back or stop work, parental aggravation, maternal health not excellent, and paternal health not excellent. The relative risk of each healthcare access and adverse family impact measure was computed by prematurity status. Propensity weighted models were fit to estimate the average treatment effect of each healthcare access measure on each adverse family impact measure among children born prematurely (i.e., VLBW or LBW/PTB). RESULTS: Bivariate analysis results showed that VLBW and/or LBW/PTB children generally fared worse than other children in terms of medical home, having a parent cut-back or stop working, parental aggravation, and paternal health. Multivariable analysis results only showed, however, that VLBW children had a significantly higher risk than other children of having a parent cut-back or stop work. Adequate health insurance and medical home were each associated with reduced adjusted relative risk of ≥$1000 in annual out-of-pocket costs, having a parent cut-back or stop work, and parental aggravation among children born prematurely. CONCLUSIONS: This study's findings demonstrate better healthcare access is associated with reduced adverse family impact among U.S. children ages 0-5 years born prematurely. Population health initiatives should target children born prematurely and their families.

Hospital Readmission of Adolescents and Young Adults With Complex Chronic Disease.

Importance: Adolescents and young adults (AYA) who have complex chronic disease (CCD) are a growing population that requires hospitalization to treat severe, acute health problems. These patients may have increased risk of readmission as demands on their self-management increase and as they transfer care from pediatric to adult health care practitioners. Objective: To assess variation across CCDs in the likelihood of readmission for AYA with increasing age. Design, Setting, and Participants: Retrospective 1-year cross-sectional study of the 2014 Agency for Healthcare Research and Quality Nationwide Readmissions Database for all US hospitals. Participants were 215 580 hospitalized individuals aged 15 to 30 years with cystic fibrosis (n = 15 213), type 1 diabetes (n = 86 853), inflammatory bowel disease (n = 48 073), spina bifida (n = 7819), and sickle cell anemia (n = 57 622) from January 1, 2014, to December 1, 2014. Exposures: Increasing age at index admission. Main Outcomes and Measures: Unplanned 30-day hospital readmission. Readmission odds were compared by patients' ages in 2-year epochs (with age 15-16 years as the reference) using logistic regression, accounting for confounding patient characteristics and data clustering by hospital. Results: Of 215 580 participants, 115 982 (53.8%) were female; the median (interquartile range) age was 24 (20-27) years. Across CCDs, multimorbidity was common; the percentages of index hospitalizations with 4 or more coexisting conditions ranged from to 33.4% for inflammatory bowel disease to 74.2% for spina bifida. Thirty-day hospital readmission rates varied significantly across CCDs: 20.2% (cystic fibrosis), 19.8% (inflammatory bowel disease), 20.4% (spina bifida), 22.5% (type 1 diabetes), and 34.6% (sickle cell anemia). As age increased from 15 to 30 years, unadjusted, 30-day, unplanned hospital readmission rates increased significantly for all 5 CCD cohorts. In multivariable analysis, age trends in the adjusted odds of readmission varied across CCDs. For example, for AYA who had cystic fibrosis, the adjusted odds of readmission increased to 1.9 (95% CI, 1.5-2.3) by age 21 years and remained elevated through age 30 years. For AYA who had type 1 diabetes, the adjusted odds of readmission peaked at ages 23 to 24 years (odds ratio, 2.3; 95% CI, 2.1-2.6) and then declined through age 30 years. Conclusions and Relevance: These findings suggest that hospitalized AYA who have CCDs have high rates of multimorbidity and 30-day readmission. The adjusted odds of readmission for AYA varied significantly across CCDs with increasing age. Further attention is needed to hospital discharge care, self-management, and prevention of readmission in AYA with CCD.

Sex differences in restricted repetitive behaviors and interests in children with autism spectrum disorder: An Autism Treatment Network study.

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.

The influence of early intervention, informal support and the family environment on trajectories of competence for fathers raising children with developmental disabilities.

BACKGROUND: Scant research disentangles the relationship between parenting competence, early intervention (EI) services, the family environment and informal support among fathers of children with developmental disabilities. AIMS: (1) To determine the trajectory of parental competence for fathers of children with DD from age 3 to age 15. (2) Controlling for child and family characteristics, determine the main effects of the family environment, informal support, and EI services on paternal competence when their child with a developmental disability was age 3. (3) To determine whether there were lasting effects of the family environment, informal support, and the EI service system on differences in paternal competence over time. METHODS: This study used multilevel modeling to analyze longitudinal data from 93 American fathers from the Early Intervention Collaborative Study. RESULTS: There was no significant change over time in paternal competence after controlling for various covariates. Fathers who initially reported low levels of competence when their child was three reported continuously lower competence over time. Family relationships, positive supports, and perceived helpfulness of home visits were significant predictors of paternal competence at age three. CONCLUSION: Implications for programs and policy include developing and adopting rigorous ways to measure and carefully monitor service provision, including assessments of paternal competence, family relationships and informal supports at the start of early intervention, and fostering continuous collaborations between providers, researchers and clinicians to address challenges in data collection.

Associations Between Early Intervention Home Visits, Family Relationships and Competence for Mothers of Children with Developmental Disabilities.

Objectives To examine the association between intensity of home visits in early intervention (EI), perceived helpfulness of home visits in EI, and positive family relationships as predictors of maternal competence at age 3, as well as moderating effects of predictors, controlling for child characteristics, family demographics, and negative life events. Methods Data were drawn from the Early Intervention Collaborative Study (EICS), a 24-year longitudinal investigation of approximately 190 families of children with developmental disabilities who participated in EI programs in Massachusetts and New Hampshire. The primary analytic strategy was multivariable regression modeling. Each independent predictor was tested individually and then all together to build the final model. Interactions between independent predictors were also examined. Results After controlling for child and family characteristics and negative life events, the intensity of home visits was not significantly associated with maternal competence at age 3. However, the helpfulness of home visits (ß = 2.94, S.E. = 1.12, p < .01) and positive family relationships (ß = 5.11, S.E. = 1.08, p < .001) were associated with higher maternal competence when the child was 3 years old. Conclusions for Practice Recommendations for programs and policy include collecting life course data on families, particularly on their family relationships and experiences in EI and home visiting, assessing family relationships at the beginning of EI using a strengths-based perspective, and closely monitoring the quality of services.

Health Care Transition Services for Youth With Autism Spectrum Disorders: Perspectives of Caregivers.

BACKGROUND AND OBJECTIVE: This paper seeks to describe the experience of youth with autism spectrum disorder (ASD) in making the health care transition (HCT) to adult care. METHODS: We surveyed 183 parents and guardians of youth with ASD, assessing the extent to which youth and families experienced and desired HCT services, their satisfaction with services, and obstacles to transition. Descriptive statistics were used to examine HCT measures and Fisher's exact and t tests assessed whether demographic or health measures were associated with service receipt. Any measures with a P value <.05 were included in a logistic regression model, with service receipt as the dependent variable. RESULTS: The receipt of transition services was low overall, with rates for individual services ranging from 3% to 33% and only 60% of the sample receiving any transition service. Despite these low rates, a majority of respondents reported wanting services (73.3%-91.6%), and satisfaction for received services was high (89%-100%). Regression analyses showed depression to be the only variable significantly associated with service receipt. Youth who were identified by their caregivers as having depression experienced a higher rate of transition service receipt than those not identified as having depression. CONCLUSIONS: Findings suggest that there is a great need to address the provision of HCT services for youth with ASD. Although families who received HCT services were generally satisfied, overall rates of service receipt were quite low, and those who were not provided with services generally desired them.

Physician Perspectives on Providing Primary Medical Care to Adults with Autism Spectrum Disorders (ASD).

We conducted in-depth case studies of 10 health care professionals who actively provide primary medical care to adults with autism spectrum disorders. The study sought to understand their experiences in providing this care, the training they had received, the training they lack and their suggestions for encouraging more physicians to provide this care. Qualitative data were gathered by phone using a structured interview guide and analyzed using the framework approach. Challenges to providing care were identified at the systems, practice and provider, and education and training levels. Solutions and interventions targeting needed changes at each level were also proposed. The findings have implications for health care reform, medical school and residency training programs, and the development of best practices.

Autism and families' financial burden: the association with health insurance coverage.

We examined the relationship between family financial burden and children's health insurance coverage in families (n  =  316) raising children with autism spectrum disorders (ASD), using pooled 2000-2009 Medical Expenditure Panel Survey data. Measures of family financial burden included any out-of-pocket spending in the previous year, and spending as a percentage of families' income. Families spent an average of $9.70 per $1,000 of income on their child's health care costs. Families raising children with private insurance were more than 5 times as likely to have any out-of-pocket spending compared to publicly insured children. The most common out-of-pocket expenditure types were medications, outpatient services, and dental care. This study provides evidence of the relative inadequacy of private insurance in meeting the needs of children with ASD.

Pediatric provider's perspectives on the transition to adult health care for youth with autism spectrum disorder: current strategies and promising new directions.

Few youth with autism spectrum disorder (ASD) nationally report receiving services to help them transition from the pediatric health care system to the adult health care system. For example, only one-fifth (21.1%) of youth with ASD receive any transition planning services. To better understand why the transition from pediatric to adult health care is so difficult, we interviewed pediatric health care providers with extensive experience serving youth with ASD. We gathered information about the strategies and interventions they use to transition their patients with ASD to an adult provider. Five interventions or strategies are currently being used. These include providing families with written medical summaries to give to adult providers, compiling lists of available adult providers or community resources, coordinating care and communication between individual pediatric and adult providers, making transition-specific appointments, and using checklists to track transition progress. Other interventions or strategies were identified as needed but not currently in practice, and these focused on education and training. For example, informational workshops were suggested to train families and youth about transition. Training adult providers and medical students was also seen as important. Several respondents additionally identified the need for a transition center where all services could be coordinated in one place. With large numbers of youth with ASD becoming young adults, it seems that pediatric practices might want to consider some of the activities described here. Some of these activities, such as family educational seminars and written medical summaries, are likely relatively easy for a practice to implement.

Youth-based participatory research: lessons learned from a transition research study.

Transitions to postsecondary education for youth with disabilities, special health care needs, or both are often challenging. Adults design most interventions aimed at assisting youth in the transition process. In this article, we report on how youth can enhance transition interventions and research. Youth representing a variety of community-based organizations that serve diverse immigrant populations served as co-researchers in a randomized controlled study called OPT4College, a program that provides postsecondary education transition support for youth with disabilities, special health care needs, or both. This youth-based participatory study used an iterative process that is quite different from the traditional research-study flow. The involvement of empowered youth and communities, in concert with academic and public health partners, increases the probability of creating interventions that ensure successful postsecondary transitions for youth with disabilities, special health care needs, or both.