Adult Inpatient Services in Pediatric Hospitals: A National Mixed Methods Study.

OBJECTIVES: Some pediatric institutions have developed adult inpatient services to enable quality care of hospitalized adults. Our objectives were to understand the characteristics of these adult inpatient services in pediatric hospitals, barriers and facilitators to their creation and sustainability, and patient and system needs they addressed. METHODS: An explanatory mixed methods study was conducted using a distribution of an electronic survey followed by targeted semi-structured interviews of directors (or designates) of adult inpatient services in US pediatric hospitals. The survey identified institutional demographics, service line characteristics, and patient populations. An interview guide was created to explore survey findings and facilitators and barriers in the creation of adult inpatient services. Interviews were conducted after survey completion. A codebook was created using an inductive thematic approach and iteratively refined. Final themes were condensed, and illustrative quotes selected. RESULTS: Ten institutions identified as having an adult inpatient service. Service staffing models varied, but all had dually trained internal medicine and pediatrics physicians. All participants voiced their respective pediatric institutions valued that these services filled a clinical care gap for hospitalized adults adding to whole-person care, patient safety, and health system navigation. CONCLUSIONS: Adult inpatient services in pediatric institutions have been present for >15 years. These services address clinical care gaps for adults hospitalized in pediatric institutions and use specialized internal medicine and pediatrics knowledge. Demonstrating return on investment of these services using a traditional fee for service model is a barrier to creation and sustainability.

Identifying Children With Medical Complexity for Care Coordination in Primary Care Settings.

Characteristics of a cohort of 98 children with medical complexity (CMC) insured by Medicaid were identified within an urban/rural pediatric practice for embedded nurse care coordination. Ninety percent of enrolled children fit the predefined requirements of requiring 3 or more subspecialists for their care. Neurology, orthopedic surgery, endocrinology, and gastroenterology were the most frequent subspecialists engaged in longitudinal care. The expected neurodevelopmental disabilities (cerebral palsy, spina bifida, Down syndrome, and other complex syndromes) were found in 64% of the patients. By applying a secondary definition to include children with complex neurodevelopmental or genetic syndromes, 98% of the patients were considered to be medically complex. The use of reliable and adequate criteria to identify medical complexity is important to determine which patients would most benefit from care coordination services, and our method was deemed successful.

Associations Among Referral Concerns, Screening Results, and Diagnostic Outcomes of Young Children Assessed in a Statewide Early Autism Evaluation Network.

OBJECTIVES: To examine associations between referral concerns, screening results, and diagnostic outcomes for young children evaluated across a statewide primary care network for early screening and diagnosis of autism spectrum disorder (ASD). STUDY DESIGN: The Early Autism Evaluation Hub system was developed to increase developmental screening and improve access to timely ASD evaluations in local communities. In 2019, 858 children (ages 18-48 months; 40% diagnosed with ASD) received ASD evaluations across 12 Early Autism Evaluation Hubs. Data on primary care provider (PCP)- and caregiver-reported referral concerns, Modified Checklist for Autism in Toddlers, Revised with Follow-Up (MCHAT-R/F) and Ages and Stages Questionnaire, Third Edition (ASQ-3), and diagnostic outcome were collected. RESULTS: Among children evaluated, there was low concordance between PCP and caregiver referral concern. Although a positive MCHAT-R/F screen was associated with PCP but not caregiver-reported ASD referral concern, there was a significant linear relationship between MCHAT-R/F raw scores and both PCP and caregiver ASD referral concern. A different pattern of ASQ-3 delays was found to be associated with PCP-reported as compared with caregiver-reported ASD referral concern. Finally, PCP-reported ASD referral concern, positive MCHAT-R/F, and ASQ-3 Communication and Personal Social delays were associated with a significantly higher likelihood of subsequent ASD diagnosis. CONCLUSIONS: Understanding how community PCPs use surveillance and screening data, the extent to which PCPs and caregivers have shared understanding and engage in collaborative decision-making about evaluation referral, and how these factors relate to diagnostic outcomes has the potential to impact educational efforts for both PCPs and caregivers of young children, as well as inform the development of more efficacious early identification approaches.

A Statewide Tiered System for Screening and Diagnosis of Autism Spectrum Disorder.

Although autism spectrum disorder (ASD) can be reliably detected in the second year of life, the average age of diagnosis is 4 to 5 years. Limitations in access to timely ASD diagnostic evaluations delay enrollment in interventions known to improve developmental outcomes. As such, developing and testing streamlined methods for ASD diagnosis is a public health and research priority. In this report, we describe the Early Autism Evaluation (EAE) Hub system, a statewide initiative for ASD screening and diagnosis in the primary care setting. Development of the EAE Hub system involved geographically targeted provision of developmental screening technical assistance to primary care, community outreach, and training primary care clinicians in ASD evaluation. At the EAE Hubs, a standard clinical pathway was implemented for evaluation of children, ages 18 to 48 months, at risk for ASD. From 2012 to 2018, 2076 children were evaluated (mean age: 30 months; median evaluation wait time: 62 days), and 33% of children received a diagnosis of ASD. Our findings suggest that developing a tiered system of developmental screening and early ASD evaluation is feasible in a geographic region facing health care access problems. Through targeted delivery of education, outreach, and intensive practice-based training, large numbers of young children at risk for ASD can be identified, referred, and evaluated in the local primary care setting. The EAE Hub model has potential for dissemination to other states facing similar neurodevelopmental health care system burdens. Implementation lessons learned and key system successes, challenges, and future directions are reviewed.

Social complexity negatively influences lung function in cystic fibrosis after transfer to adult care.

BACKGROUND: Several nongenetic factors, such as socioeconomic status, environmental exposures, and adherence have been described to have an impact on outcomes in cystic fibrosis (CF). OBJECTIVE: To determine the effect of social complexity on the % predicted forced expiratory volume (ppFEV1 ) before and after transfer to adult care among adolescents with CF. METHODS: Retrospective, single center, cohort study included all patients with CF who were transitioned into adult care between 2005 and 2015 at Indiana University. Social complexity (Bob's level of social support, [BLSS]) was collected at transfer. Linear mixed regression models assessed the relationship between ppFEV1 decline over time and BLSS with other covariates. RESULTS: The median age of the patients (N = 133) at the time of transfer was 20 years (interquartile range: 19-23). Overall, there was a decline in lung function over time in our population (ppFEV1 at 24 months pretransfer 77 ± 20%, ppFEV1 at 24 months, posttransfer 66 ± 24%; P < .001). The relationship between BLSS and ppFEV1 became more negative over time, even after adjusting for other covariates. CONCLUSION: Social complexity is strongly associated with lung function decline after transfer to adult care.

Impact of social complexity on outcomes in cystic fibrosis after transfer to adult care.

OBJECTIVE: This study evaluates the roles of medical and social complexity in health care use outcomes in cystic fibrosis (CF) after transfer from pediatric to adult care. METHODS: Retrospective cohort design included patients with CF who were transitioned into adult care at Indiana University from 2005 to 2015. Predictor variables included demographic and comorbidity data, age at transition, treatment complexity score (TCS), and an objective scoring measure of their social complexity (Bob's Level of Social Support, BLSS). Outcome variables included outpatient visit rates and hospitalization rates. Pearson's correlations and linear regression were used to analyze the data. RESULTS: The median age of the patients (N = 133) at the time of transition was 20 (IQR 19-23) years. The mean FEV1 % predicted at transition was 69 ± 24%. TCS correlated with outpatient visit rates (r = 0.3, P = 0.003), as well as hospitalization rates (r = 0.4, P < 0.001); while the BLSS only correlated with hospitalization rates (r = 0.7, P < 0.001). After adjusting for covariates, the strongest predictors of post-transfer hospitalizations are BLSS (P < 0.0001) and pre-transfer hospitalization rate (P < 0.0001). CONCLUSION: Greater treatment complexity is associated with greater healthcare utilization overall, while greater social complexity is associated with increased hospitalizations (but not outpatient visits). Screening young adults for social complexity may identify high-risk subpopulations and allow for patient centered interventions to support them and prevent avoidable health care use.

Assessing the health, functional characteristics, and health needs of youth attending a noncategorical transition support program.

PURPOSE: To assess the health, functional characteristics, and health care service needs of youth and young adults with special health care needs attending a comprehensive, noncategorical transition program. METHODS: A self-administered survey was developed from national health surveys and clinical experience to assess concepts identified as important for successful transition to adulthood. Surveys were mailed to 198 parents of youth and young adults with special health care needs attending the transition clinic. Parents were asked about the youth's health, functional status, and health care services needed. The clinical database provided demographic and patient health characteristics. Results were compared against the 2005-2006 National Survey of Children with Special Health Care Needs. RESULTS: Forty-four percent of surveys were returned. Average age of youth was 17.5 (11-22) years old and diagnoses included cerebral palsy (36%), spina bifida (10%), developmental delay or Down syndrome (17%), and autism (6%). Most youth needed assistance with personal care (69%) and routine needs (91%) and used assistive devices (59%). Compared with the 2005-2006 National Survey of Children with Special Health Care Needs, parents reported higher needs for all services except mental health care and tobacco or substance use counseling. Forty three percent reported at least one unmet health need. Few parents reported the need for counseling on substance use (1%), sexual health screening (16%), nutrition (34%), and exercise (41%). CONCLUSIONS: Youth attending our transition program had more functional limitations, poorer reported health status, different diagnosis distribution, and higher levels of needed health services. Few parents identified needs for other recommended adolescent preventive services. Transition programs should assess patient health characteristics and service needs to design effective patient-centered services.