Continuation of Pediatric Care after Transfer to Adult Care Among Autistic Youth Overlap of Pediatric and Adult Care.

The transition from pediatric to adult health care is a vulnerable time period for autistic adolescents and young adults (AYA) and for some autistic AYA may include a period of receiving care in both the pediatric and adult health systems. We sought to assess the proportion of autistic AYA who continued to use pediatric health services after their first adult primary care appointment and to identify factors associated with continued pediatric contact. We analyzed electronic medical record (EMR) data from a cohort of autistic AYA seen in a primary-care-based program for autistic people. Using logistic and linear regression, we assessed the relationship between eight patient characteristics and (1) the odds of a patient having ANY pediatric visits after their first adult appointment and (2) the number of pediatric visits among those with at least one pediatric visit. The cohort included 230 autistic AYA, who were mostly white (68%), mostly male (82%), with a mean age of 19.4 years at the time of their last pediatric visit before entering adult care. The majority (n = 149; 65%) had pediatric contact after the first adult visit. Younger age at the time of the first adult visit and more pediatric visits prior to the first adult visit were associated with continued pediatric contact. In this cohort of autistic AYA, most patients had contact with the pediatric system after their first adult primary care appointment.

Primary Care Interventions to Prevent Child Maltreatment: Evidence Report and Systematic Review for the US Preventive Services Task Force.

Importance: Child maltreatment is associated with serious negative physical, psychological, and behavioral consequences. Objective: To review the evidence on primary care-feasible or referable interventions to prevent child maltreatment to inform the US Preventive Services Task Force. Data Sources: PubMed, Cochrane Library, and trial registries through February 2, 2023; references, experts, and surveillance through December 6, 2023. Study Selection: English-language, randomized clinical trials of youth through age 18 years (or their caregivers) with no known exposure or signs or symptoms of current or past maltreatment. Data Extraction and Synthesis: Two reviewers assessed titles/abstracts, full-text articles, and study quality, and extracted data; when at least 3 similar studies were available, meta-analyses were conducted. Main Outcomes and Measures: Directly measured reports of child abuse or neglect (reports to Child Protective Services or removal of the child from the home); proxy measures of abuse or neglect (injury, visits to the emergency department, hospitalization); behavioral, developmental, emotional, mental, or physical health and well-being; mortality; harms. Results: Twenty-five trials (N = 14 355 participants) were included; 23 included home visits. Evidence from 11 studies (5311 participants) indicated no differences in likelihood of reports to Child Protective Services within 1 year of intervention completion (pooled odds ratio, 1.03 [95% CI, 0.84-1.27]). Five studies (3336 participants) found no differences in removal of the child from the home within 1 to 3 years of follow-up (pooled risk ratio, 1.06 [95% CI, 0.37-2.99]). The evidence suggested no benefit for emergency department visits in the short term (<2 years) and hospitalizations. The evidence was inconclusive for all other outcomes because of the limited number of trials on each outcome and imprecise results. Among 2 trials reporting harms, neither reported statistically significant differences. Contextual evidence indicated (1) widely varying practices when screening, identifying, and reporting child maltreatment to Child Protective Services, including variations by race or ethnicity; (2) widely varying accuracy of screening instruments; and (3) evidence that child maltreatment interventions may be associated with improvements in some social determinants of health. Conclusion and Relevance: The evidence base on interventions feasible in or referable from primary care settings to prevent child maltreatment suggested no benefit or insufficient evidence for direct or proxy measures of child maltreatment. Little information was available about possible harms. Contextual evidence pointed to the potential for bias or inaccuracy in screening, identification, and reporting of child maltreatment but also highlighted the importance of addressing social determinants when intervening to prevent child maltreatment.

Predicting timely transfer to adult care in a cohort of autistic adolescents and young adults.

BACKGROUND: The transition from pediatric to adult care is a challenge for autistic adolescents and young adults. Data on patient features associated with timely transfer between pediatric and adult health care are limited. Our objective was to describe the patient features associated with timely transfer to adult health care (defined as

Improving the use of transition readiness measures in research and clinical care.

Measurement of transition readiness is considered a crucial component of effective transition. It is included as one of the Six Core Elements of Transition in national transitional care guidelines. However, the current measures of transition readiness have not been found to correlate with either current or future health outcomes for youth. In addition, there are challenges in measuring transition readiness in youth with intellectual and developmental disabilities, who may not be expected to achieve skills and knowledge that are considered essential for transition in typically developing youth. These concerns make it difficult to know how best to use transition readiness measures in research and clinical care. This article highlights the appeal of measuring transition readiness in clinical and research contexts, the current barriers that prevent us from fully achieving those benefits, and potential strategies for bridging the gap. IMPACT: Transition readiness measures were developed as an attempt to identify those patients who were ready to successfully navigate the transition from pediatric to adult health care. Thus far, the measures that have been developed do not appear to be related to health outcomes such as disease control or timely attendance of the first adult appointment in adult care. We provide suggestions for how to address the current concerns with the available transition readiness measures.

Development, pilot implementation, and preliminary assessment of a transition process for youth living with HIV.

PURPOSE: To describe the development and pilot implementation of a transition process for youth living with human immunodeficiency virus (HIV) and to assess the perceptions of the process among youth living with HIV (YLHIV), their caregivers, and clinical staff. DESIGN AND METHODS: A multidisciplinary core planning team developed a transition planning framework and process. With the assistance of the appropriate hospital departments, we created educational material for patients and caregivers and a flowsheet for documentation in the electronic medical record (EMR). Staff were trained on implementation of the process and documentation in the EMR. To assess the process, we surveyed staff, YLHIV, and caregivers for feedback. RESULTS: Our transition process was informed by our goal to provide transition support that could respond to a variety of patient factors. We developed a process focused on four stages: 1. Introduction to Transition, 2. Building Knowledge and Skills, 3. Growing in Independence, and 4. Adult Care Ready. Each stage contains competencies for the patient and tasks for the care team. The pace of proceeding through the stages is determined by completion of competencies rather than patient age. Results from youth and staff showed that the transition process and informational material were helpful. CONCLUSION: We developed a transition process for YLHIV and implemented this process in an HIV clinic. Initial survey data shows that youth, caregivers, and staff found this strategy helpful. PRACTICE IMPLICATIONS: This pilot process may serve as a source of guidance to other clinics seeking to establish their own transition process.

Trajectories of the Transition Readiness Assessment Questionnaire Among Youth With Inflammatory Bowel Disease.

OBJECTIVE: The objective of this study was to describe in detail the trends of the Transition Readiness Assessment Questionnaire (TRAQ-20) with respect to patient age and gender among a cohort of 655 youth with inflammatory bowel disease (IBD) to enhance the tool's utility in clinical and research settings. MATERIALS AND METHODS: All participants in the Crohn's and Colitis Foundation's IBD Partners and IBD Partners Kids and Teens Cohorts ages 12 to 21 who completed the TRAQ-20 at least once were included. We computed centile scores for the TRAQ-20 and applied Kernel regression to generate curves. We computed mean scores for each TRAQ-20 domain by age for the overall cohort and stratified by gender. RESULTS: TRAQ-20 scores generally increase with age. Males have a steeper trajectory from ages 17 to 19 compared with females. By age 21, median overall TRAQ-20 scores for women and men were 4.4 and 4.7, respectively. The "Talking with Providers" domain of the TRAQ-20 had high scores throughout the age range of the cohort, while others had lower scores in younger ages and higher scores in older ages. All TRAQ-20 domains had mean scores of 4 or greater (out of a possible 5) among 21-year-olds. CONCLUSIONS: TRAQ-20 scores increase with age. The rate of increase varies by gender. Rates of increase also differ across domains. The use of transition readiness growth curves can help providers and researchers identify patients who are not achieving expected levels of transition readiness and determine the level of transition readiness that a patient much achieve before transfer to adult care.

Implementation and Evolution of a Primary Care-Based Program for Adolescents and Young Adults on the Autism Spectrum.

Current primary care models are inadequate for adults on the autism spectrum. The Center for Autism Services and Transition (CAST) clinic was developed in 2014 using feedback from parents of adults on the autism spectrum and patient-centered medical home principles. We evaluated the reach of CAST's services. As of January 2021, 858 patients were seen in CAST. Many continue to receive primary care from the CAST clinic. The program has undergone staffing changes but continues to accept new patients. We have added services such as "happy visits," pre-procedure videos, and telehealth visits. CAST provides one example of how to improve primary care for adults on the autism spectrum. More research is needed to assess the effectiveness of the CAST model.

Exploring Health Literacy, Transition Readiness, and Healthcare Utilization in Medicaid Chronically Ill Youth.

PURPOSE: Youths with special healthcare needs face challenges transitioning from pediatric to adult health care. Understanding possible mechanisms contributing to poor healthcare transition could improve care. This study explores associations between health literacy (HL), transition readiness, and healthcare utilization. METHODS: Youths with special healthcare needs aged 12-18 years were recruited from a Medicaid accountable care organization (2012-2017). Outcome measures included transition readiness (Transition Readiness Assessment Questionnaire), and healthcare utilization (any well-check, hospitalization, emergency department [ED] visit, or ambulatory sensitive condition ED visit). Multivariate regression analyses examined whether HL (adequate vs. inadequate) predicted outcomes, after adjusting for covariates. Models were then created to examine whether the effect of HL on healthcare utilization was mediated by transition readiness. RESULTS: Among 417 youths with special healthcare needs, 67.1% reported adequate HL. Relative to inadequate HL, teens with adequate HL had significantly higher average Transition Readiness Assessment Questionnaire-20 scores (ß = .34, p < .001). Controlling for covariates, HL was a significant predictor of having an ambulatory sensitive condition ED visit and having any ED visits neared significance. There was a positive transition readiness mediation effect on having an ED visit, with higher transition readiness being associated with higher odds of having any ED visit in the mediation analysis. CONCLUSIONS: HL is independently associated with higher transition readiness and lower ambulatory sensitive condition ED use, but pathways of action require further study.

Evaluation of the TRxANSITION Index-Parent Version for Assessment of Readiness to Transition to Adult Care Among Youth with Chronic Conditions.

PURPOSE: To develop and evaluate a parent-proxy measure of youth HCT readiness: the TRxANSITION Index-Parent Version. DESIGN AND METHODS: We recruited parents (77% female) and youth (ages 12 to 25) to complete transition readiness measures during outpatient clinic visits. The TRxANSITION Index-Parent Version contains two domains: the Parent Knowledge Domain assessing a parent's knowledge of their youth's illness, and the Parent Proxy Domain, which provides a parental perspective regarding a youth's transition readiness skills. We evaluated the TRxANSITION Index - Parent Version for differences between parent and youth reports of HCT readiness, associations between parent's score and youth's characteristics, and item-category, item-sub-index, and sub-index category correlations. RESULTS: Data from 93 parents-youth dyads were analyzed. Parents scored significantly higher than youth in the Parent Knowledge Domain and similarly in the Parent Proxy Domain. Parents of daughters had significantly higher scores in the Parent Knowledge Domain than parents of sons and reported similar scores to Parents of sons in the Parent Proxy Domain. Only the self-management sub-index significantly correlated with youth's age. The sub-index-domain, item-sub-index, and item-domain correlations assessed were generally large in magnitude (r > 0.5). CONCLUSIONS: The TRxANSITION Index-Parent Version shows promise as a means of assessing parent knowledge of a youth's illness and may provide an accurate proxy assessment of a youth HCT readiness skills. PRACTICE IMPLICATIONS: Obtaining parental perspective on a youth's HCT readiness may provide useful clinical information during the transition process.

Transition Readiness Not Associated With Measures of Health in Youth With IBD.

BACKGROUND: It remains unclear how transition readiness is associated with various domains of health in children and young adults. Our objective was to describe the transition readiness of children and young adults with inflammatory bowel disease (IBD) and examine its associations with demographic factors, IBD activity, and measures of physical, psychological, and social health. METHODS: We recruited children ages 12 to 17 and young adults ages 18 to 20 from 2 internet-based cohorts sponsored by the Crohn's & Colitis Foundation. Participants self-reported demographics, IBD activity, transition readiness, health-related quality of life, and Patient-Reported Outcomes Information Systems domains of physical, psychological, and social health. RESULTS: Among 361 pediatric and 119 adult participants, age and female sex were associated with transition readiness. The association was greater in the pediatric cohort. Having IBD in remission was associated with worse transition readiness in the pediatric cohort only (beta = 0.3; P = 0.003). Health-related quality of life and Patient-Reported Outcomes Information Systems measures of fatigue, pain interference, and sleep disturbance were not associated with transition readiness in either children or adults. We observed few small associations between psychological or social health and transition readiness. Better transition readiness was associated with greater anxiety in adults (beta = -0.02; P = 0.02) and greater peer relationships among children (beta = 0.01; P = 0.009). CONCLUSIONS: In children and young adults with IBD, transition readiness was associated with older age and female sex. Associations between transition readiness and physical, psychological, and social health were either small, inconsistent across age groups, or nonexistent.

Changes in Provider Type and Prescription Refills Among Privately Insured Children and Youth With ADHD.

OBJECTIVE: The aim of this paper is to understand associations between age and health care provider type in medication continuation among transition-aged youth with ADHD. METHOD: Using an employer-sponsored insurance claims database, we identified patients with likely ADHD and receipt of ADHD medications. Among patients who had an outpatient physician visit at baseline and maintained enrollment at follow-up 3 years later, we evaluated which ones continued to fill prescriptions for ADHD medications. RESULTS: Patients who were younger at follow-up more frequently continued medication (77% of 11-12 year-olds vs. 52% of 19-20 year-olds). Those who saw a pediatric provider at baseline and follow-up more frequently continued to fill ADHD medication prescriptions than those who saw a pediatric provider at baseline and non-pediatric providers at follow-up (71% vs. 53% among those ages 15-16 years at follow-up). CONCLUSION: Adolescents and young adults with ADHD who changed from pediatric to exclusively non-pediatric providers less frequently continued to receive ADHD medications.

Support for Transition from Adolescent to Adult Health Care Among Adolescents With and Without Mental, Behavioral, and Developmental Disorders - United States, 2016-2017.

Clinical guidelines recommend that primary care providers (PCPs) provide guidance and support to ensure a planned transition from pediatric to adult health care for adolescents, beginning at age 12 years (1). However, most adolescents do not receive the recommended health care transition planning (2). This is particularly concerning for adolescents with diagnosed mental, behavioral, and developmental disorders (MBDDs) (3), who account for approximately 20% of U.S. adolescents (4). Childhood MBDDs are linked to increased long-term morbidity and mortality; timely health care transition planning might mitigate adverse outcomes (5,6). CDC analyzed pooled, parent-reported data from the 2016 and 2017 National Survey of Children's Health (NSCH), comparing adolescents, aged 12-17 years, with and without MBDDs on a composite measure and specific indicators of recommended health care transition planning by PCPs. Overall, approximately 15% of adolescents received recommended health care transition planning: 15.8% (95% confidence interval [CI] = 14.1%-17.5%) of adolescents with MBDDs, compared with 14.2% (95% CI = 13.2%-15.3%) of adolescents without MBDDs. Relative to peers without MBDDs and after adjusting for age, adolescents with anxiety were 36% more likely to receive recommended health care transition planning, and those with depression were 69% more likely; adolescents with autism spectrum disorder (ASD) were 35% less likely to receive such transition planning, and those with developmental delay* were 25% less likely. Fewer than 20% of adolescents with MBDDs receiving current treatment met the transition measure. These findings suggest that a minority of adolescents with MBDDs receive recommended transition planning, indicating a potential missed public health opportunity to prevent morbidity and mortality in a population at high risk for health care disengagement (1). Improving access to comprehensive and coordinated programs and services,† as well as increasing provider training concerning adolescents' unique mental and physical health care needs (7), could help increase the number of adolescents benefiting from successful health care transitions (4).

What Care Models Have Generalists Implemented to Address Transition from Pediatric to Adult Care?: a Qualitative Study.

BACKGROUND: The transition from pediatric to adult care is a critical period for young adults with childhood-onset conditions. General internists are tasked with participating in the care of this vulnerable population. Existing guidelines regarding transition do not fully address structural or organizational characteristics of practices that facilitate transition. Moreover, literature regarding transition has focused on pediatric subspecialty settings, leaving internists with little guidance after transfer. OBJECTIVES: To better understand post-transfer transitional care by describing care models that primary care providers have implemented, and examining common features of generalist physicians' experiences providing transitional care. DESIGN: Qualitative methods, semi-structured interviews. PARTICIPANTS: Nineteen generalist-trained physicians from across the USA, engaged in transition-focused and/or ongoing care of adolescents and young adults with childhood-onset conditions. APPROACH: Content and grounded theory analyses. KEY RESULTS: Participants included nineteen physicians from seventeen institutions. Most (89%) were from academic medical centers. About 80% had completed a combined internal medicine-pediatrics residency. About 70% worked with clinic staff who were dedicated to transition. Practice structures fell into four main care models: (1) primary care in adult settings; (2) transition support and primary care in pediatric settings; (3) a blend of pediatric and adult care elements forming a bridge during transition; and (4) a transition consultative service. Most provided primary care for adults with childhood-onset conditions within larger adult-oriented primary care practices. Common features across interviews included taking extra time with patients both during and between visits and an interdisciplinary team-based approach. Shared practice strategies and philosophies emphasized care coordination, focus on the whole patient beyond immediate health concerns, and willingness to learn from practice and from families. CONCLUSIONS: Participants used disparate care models. Common features and strategies among interviews highlight key functions and attributes of transitional care across settings, suggest important elements of care post-transfer, and clarify the role of generalists.

An Evidence Map for Interventions Addressing Transition from Pediatric to Adult Care: A Systematic Review of Systematic Reviews.

PROBLEM: Adolescents and young adults with chronic illnesses continue to face barriers as they transition from pediatric to adult care. An evidence map can help to identify gaps in the transition literature to determine targets for future research. ELIGIBILITY CRITERIA: We searched PubMed, CINAHL, PsycInfo, and Cochrane for systematic reviews published through February 2018. Eligible reviews included at least one comparative study testing a youth-focused intervention for improving transition with at least one quantitative health-related outcome reported. SAMPLE: We identified 431 unique reviews in our search, and 37 reviews (containing 71 eligible primary studies) met inclusion criteria. RESULTS: Most reviews (20 of 37) summarized some aspect of transition across diagnoses. Type 1 diabetes was the most common diagnosis studied (7 of 37 reviews and 24 of 71 primary studies). Only 14 of 71 primary studies focused on care after transfer to adult care. CONCLUSIONS: The literature on interventions to improve transition to adult care has focused on a limited number of diagnoses, most commonly Type 1 diabetes. Common pediatric conditions, such as asthma, have not been studied with regard to transition. Efforts have been mainly targeted on transition preparation, with less focus on transition needs after transfer to adult care. IMPLICATIONS: There is a need for transition research focused on common pediatric conditions and transition needs after transfer to adult care.

Where Did They Go? Tracking Young Adult Follow-up During the Transition From Pediatric to Adult-Oriented Care.

Continuity of care during health care transition is critical. We sought to evaluate electronic medical record clinic attendance data to examine this outcome. We identified 1623 patients (ages 18-27 years) with 1 of 6 childhood-onset chronic conditions and tracked clinic utilization from January 2002 to July 2016. Patients were classified as active in pediatric care; lost from pediatric care; successfully transferred; or lost from adult care. Using random effects logistic regression, we compared the number of days between last pediatric and first adult visit to each clinic's self-reported transitional care quality score. In this cohort, >44% remained active in care at the end of the study. Clinics with higher proportions of successfully transferred patients had lower median numbers of days between last pediatric and first adult visit and higher transitional care quality scores. Characterizing utilization patterns with electronic medical record data allows health systems to track transitional care outcomes and target improvement efforts.