A Quality Improvement Initiative to Improve Health Care Transition Planning at Adolescent Well Visits.

OBJECTIVE: Health care transition (HCT) planning supports adolescents as they move from pediatric to adult health care and is recommended for all youth. HCT planning uptake remains low, with little known about HCT in the adolescent well child check (WCC) setting. We sought to increase rates of HCT planning at WCCs by adapting best practices for HCT from specialty and chronic care. METHODS: This quality improvement initiative at 12 to 17-year-old WCCs at four Internal Medicine-Pediatrics primary care clinics, was based on the first three of the "Six Core Elements" of HCT framework and integrated into the electronic health record. Two uptake measures were assessed via chart review after three plan-do-study-act (PDSA) cycles, with two provider surveys and an implementation science analysis further informing interpretation. RESULTS: By the final PDSA cycle, the percentage of 14 to 17-year-old WCCs at which HCT planning was discussed and a screening tool completed increased from 5% to 31%, and the percentage of 12 to 13-year-old WCCs at which the HCT policy was discussed increased from 6% to 47%. Provider survey results revealed endorsement of HCT goals, but time and technological barriers, which were further elucidated in the implementation science analysis. CONCLUSIONS: This quality improvement initiative increased rates of HCT planning during adolescent WCCs. While limited to three Core Elements and Internal Medicine-Pediatrics clinics, strengths include measures capturing all WCCs, contextualized by provider surveys and an implementation science framework. Lessons from this effort can inform future tailored HCT initiatives at adolescent WCCs.

Health and Well-Being at the Transition to Adulthood Among Individuals With Disabilities: An Analysis of the Panel Study of Income Dynamics.

PURPOSE: To describe positive mental health, or "flourishing," and self-reported health trajectories among transition-aged young adults (TAYA) with developmental/learning and physical disabilities over a 12-year period, utilizing a population-based sample. METHODS: This study features a secondary analysis of national data from the Panel Study of Income Dynamics Transition to Adulthood Supplement. The analytic sample included all TAYA with (n = 487) and without (n = 810) disabilities, including developmental/learning disabilities (DD/LD), attention deficit hyperactivity disorder (ADHD), and speech, hearing, and vision impairments who participated in 2017 Transition to Adulthood Supplement data collection (n = 1,297; M age = 24.5, standard deviation = 2.40). We utilized linear mixed modeling to retrospectively describe flourishing and self-reported health trajectories across 12 years among TAYA with and without disabilities between ages 18 to 28, adjusting for demographic and developmental characteristics. RESULTS: Relative to TAYA without disabilities, TAYA with speech [0.10, 0.85] and vision impairments [0.10, 0.92], DD/LD [0.38, 1.11], and ADHD [0.27, 0.97] demonstrated lower flourishing. TAYA with speech [0.07, 0.36] and vision impairments [0.08, 0.38], DD/LD [0.15, 0.411], and ADHD [0.14, 0.93] reported lower health. Relative to TAYA with other disabilities, TAYA with ADHD [0.14, 0.93] and DD/LD [0.01, 0.29] reported lower flourishing and health, respectively. Interaction effects and descriptive analyses revealed distinct patterns of change for TAYA with ADHD. DISCUSSION: TAYA with disabilities report lower flourishing and health, relative to TAYA without disabilities. TAYA with specific disabilities differ in their flourishing and health trajectories. Findings can inform the development of interventions for TAYA with disabilities.

Improving autism identification and support for individuals assigned female at birth: clinical suggestions and research priorities.

Emerging evidence suggests that the higher prevalence of autism in individuals who are assigned male than assigned female at birth results from both biological factors and identification biases. Autistic individuals who are assigned female at birth (AFAB) and those who are gender diverse experience health disparities and clinical inequity, including late or missed diagnosis and inadequate support. In this Viewpoint, an international panel of clinicians, scientists, and community members with lived experiences of autism reviewed the challenges in identifying autism in individuals who are AFAB and proposed clinical and research directions to promote the health, development, and wellbeing of autistic AFAB individuals. The recognition challenges stem from the interplay between cognitive differences and nuanced or different presentations of autism in some AFAB individuals; expectancy, gender-related, and autism-related biases held by clinicians; and social determinants. We recommend that professional development for clinicians be supported by health-care systems, professional societies, and governing bodies to improve equitable access to assessment and earlier identification of autism in AFAB individuals. Autistic AFAB individuals should receive tailored support in education, identity development, health care, and social and professional sense of belonging.

Using a life course health development framework to combat stigma-related health disparities for individuals with intellectual and/or developmental disability (I/DD).

In the U.S., 1 in 6 children has an intellectual and/or developmental disability (I/DD). This population experiences a multitude of negative health outcomes across the life course, relative to the general population. Stigma-the social devaluation of individuals with certain characteristics, identities, or statuses within interpersonal, educational, healthcare, and policy contexts-is a potentially preventable contributor to health disparities. To date, existing approaches for addressing and preventing stigma are limited to discrete and siloed interventions that often fail to address the lifelong, cumulative impacts of the specific types of stigma experienced by the I/DD population. In the current paper, we describe three elements of Life Course Health Development (LCHD)-a novel translational framework that draws on evidence from biology, sociology, epidemiology, and psychology-that healthcare providers can use to prevent stigma-related health disparities and improve outcomes for individuals with I//DDs. We discuss the utility of targeting prevention to sensitive periods; prioritizing interventions for the most damaging types of stigmas; and leveraging supports from multiple service systems and sectors. By incorporating evidence from life course science into efforts to address stigma-related health disparities, providers can more effectively and strategically prevent and combat stigma-related health disparities for the I/DD population in childhood and across the life course.

Updates to the Autism Intervention Research Network on Physical Health (AIR-P) Research Agenda.

INTRODUCTION: Autistic individuals, now representing one in 36 individuals in the U.S., experience disproportionate physical health challenges relative to non-autistic individuals. The Health Resources and Services Administration's (HRSA) Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multi-center Research Network that aims to increase the health, well-being, and quality of life of autistic individuals. The current paper builds on the initial AIR-P Research Agenda (proposed in Year 1) and provides an updated vision for the Network. METHODS: Updates to the Research Agenda were made via the administration of a Qualtrics survey, and disseminated widely to all AIR-P entities, including the Research Node Leaders, Steering Committee, Autistic Researcher Review Board, and collaborating academic and non-academic entities. Network members were tasked with evaluating the Year 1 Research Agenda and proposing additional priorities. RESULTS: Within each Research Node, all Year 1 priorities were endorsed as continued priorities for research on autism and physical health. Specific topics, including co-occurring conditions and self-determination, advocacy, and decision-making, were particularly endorsed. Opportunities for exploratory studies and intervention research were identified across Research Nodes. Qualitative responses providing feedback on additional research priorities were collected. CONCLUSION: The updated AIR-P Research Agenda represents an important step toward enacting large-scale health promotion efforts for autistic individuals across the lifespan. This updated agenda builds on efforts to catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health promotion.

The role of social capital in resilience among adolescents with adverse family environments.

The Life Course Health Development (LCHD) framework underscores the profound impact of stressors during critical developmental phases on an individual's lifelong health, including their mental well-being. Among these developmental transitions, adolescence emerges as a pivotal life stage where an adolescent's mental health trajectory is significantly influenced by the various risk and promotive factors embedded within their social ecosystem. Adolescents from adverse family environments (AFEs) face heightened susceptibility to mental health challenges. Nevertheless, there are opportunities within the adolescent's environment to foster resilience. In this paper, we employ an interdisciplinary approach grounded in the LCHD framework to assess existing research pertaining to resilience, social capital, and health development. Furthermore, we aim to provide actionable recommendations tailored to healthcare providers, with a specific emphasis on strategies to augment mental health outcomes among adolescent populations, particularly those experiencing AFEs.

Preliminary Pilot-Testing of Intimate Partner Violence Screening for Transgender and Gender Diverse (TGD) Individuals in Med-Peds and Family Medicine.

INTRODUCTION: Transgender and gender diverse (TGD) individuals, comprised of those whose gender identity does not correspond with the sex they were assigned at birth, represent approximately 1.4 million people in the U.S., with a higher prevalence among those 18-24 years old. TGD individuals experience high levels of intimate partner violence (IPV), which leads to disproportionately negative mental and physical health outcomes for this population. As a result, there is a resounding need to connect TGD populations to health-promoting services, supports and resources. Med-Peds and Family Medicine clinics may be particularly well-positioned to support these efforts due to physicians' focus on transitional-aged youth and young adults under 30. METHODS: The current manuscript reports on processes and outcomes related to a quality improvement (QI) initiative that aimed to test the feasibility and acceptability of implementing IPV screening within both a Med-Peds and a Family Medicine specialty clinic serving TGD populations in Los Angeles, CA. This QI initiative included screeners that capture IPV in cisgender/non-TGD populations (Humiliation, Afraid, Rape, Kick [HARK]) as well as in TGD populations specifically (IPV-T). We utilized a mixed-methods approach to both quantify and qualify responses to existing IPV screening as well as informal feedback from clinic "champions" in each clinic. RESULTS: Quantitative and qualitative findings from this QI initiative, featuring both general and TGD-specific IPV screening measures with 140 TGD individuals, elucidated several important processes that can support effective IPV screening and referral to supports and services. These include the importance of interdisciplinary teams, the utility of an iterative approach to screener roll-out, and the essential role of solidifying a referral process in these efforts. This project additionally shed light on the potential utility and challenges of implementing both general and TGD-specific IPV screening measures. Our pilot test did not support the necessity of a TGD-specific IPV screener for identifying and responding to IPV in this population, yet additional data is critical to generate more conclusive recommendations. CONCLUSION: We recommend larger-scale data collection efforts to evaluate the utility of integrating general and TGD-specific screeners into clinic workflows to ensure optimal health promotion for the TGD population in Med-Peds and Family Medicine clinics.

Developing "Adulting for Health": Investigating the Health Needs of Neurodivergent Emerging Adults.

INTRODUCTION: Neurodivergent emerging adults - defined as individuals between the ages of 18 and 30 with intellectual and/or developmental disabilities (e.g., attention-deficit hyperactivity disorder (ADHD), autism, cerebral palsy, learning disabilities, seizures, developmental delays, with or without intellectual impairment) and physical and/or sensory disabilities (e.g., blindness or hearing impairment) - experience poor mental and physical health outcomes. Existing interventions are insufficient because they are not based on the self-reported and developmental needs of this population. METHODS: The current study is an exploratory pilot study that features a multidimensional health-based needs assessment of self-identified neurodivergent emerging adults with ADHD, learning disabilities, autism, and other conditions, mean (M) age = 22.8; standard deviation (SD) = 3.4; n = 26). This research used validated measures. The assessment - administered via Qualtrics to the participants in two sites - included the Mental Health Continuum-Short Form, Kessler-6 Psychological Distress Scale, Project EAT (Eating and Activity over Time)-IV (with the intuitive eating, weight-related control, emotional eating, and physical activity subscales), and an original health-focused needs assessment developed by interdisciplinary healthcare professionals and neurodivergent individuals. RESULTS: The sample reported low positive mental health, with only 3% reportedly "flourishing." The sample also reported high psychological distress according to clinical and psychometric cut-off scores; varied intuitive eating and weight-control behaviors and attitudes; and distinct needs related to integrating the principles of health promotion into daily life, navigating the healthcare system, and learning from healthcare professionals. Based on these findings, we present an initial conceptualization of "Adulting for Health," a potential virtual education program to promote health-related knowledge and capacities for this population. CONCLUSIONS: The results from this exploratory pilot study can be incorporated into existing programs and spur efforts to develop and test new interventions that can ameliorate health disparities for neurodivergent emerging adults.

A Neurodiversity-Oriented Approach to Address Autism Wandering as a "Problem Behavior" in Pediatrics.

Pediatricians are frequently tasked with addressing autism "problem behaviors," including wandering, defined as leaving the safety of a responsible person's care or a safe area (alternatively referred to as elopement). In the following commentary, we - as autism researchers and individuals with lived experience - discuss the prevalence and public health consequences of wandering. We conceptualize wandering in the context of "problem behaviors" for autistic individuals and describe the current state of the evidence on wandering prevention and intervention. We emphasize that pediatricians have a unique opportunity to optimize their efforts to address wandering - as well as related "problem behaviors" - utilizing a neurodiversity orientation. This will allow them to enact approaches that address the potential upstream mechanisms underlying wandering to make these efforts more effective and provide critical assistance to families. In this manuscript, we provide recommendations to pediatricians to more effectively address the mechanisms underlying and exacerbating these challenges to improve the health, well-being, and quality of life of autistic children and their families. In particular, we recommend that pediatricians focus efforts toward 1) addressing the link between chronic stress and "problem behaviors"; 2) engaging individuals, caregivers, and families as experts in their health and development; and 3) collaborating with the systems and sectors relevant to autistic individuals and their families.

Preliminary Pilot-Testing of Social Determinants of Health Screener for Individuals With Intellectual and Developmental Disabilities in Med-Peds.

In the United States, one in six children has an intellectual and/or developmental disability (I/DD), including attention deficit hyperactivity disorder (ADHD), autism, cerebral palsy, learning disabilities, seizures, and developmental delays, with or without intellectual impairment. Individuals with I/DDs experience disproportionate rates of immune, metabolic, cardiovascular, and neurological disorders, as well as anxiety, depression, functional somatic symptoms, and other co-occurring physical and mental health conditions. During the coronavirus disease 2019 (COVID-19) pandemic, having an I/DD emerged as one of the strongest predictors of contracting and dying from COVID-19. These findings spurred increased attention toward the myriad health inequities affecting this population well before the pandemic. While inequities for individuals with I/DD can be traced to many factors, social determinants of health (SDOH) - the underlying social, economic, and environmental conditions that lead to poor health outcomes and high healthcare costs - are key contributors. Our interdisciplinary combined internal medicine and pediatrics (Med-Peds) team of physicians, psychologists, and researchers within a large, diverse, academic health system aimed to pilot-test the implementation of a five-item SDOH screener within a Med-Peds specialty clinic focused on the developmental needs of individuals with I/DD and their families (Leadership Education in Neurodevelopmental Disabilities {LEND}) and a general primary care practice (PCP). The SDOH screener tested in this initiative includes five items from the Accountable Health Communities (AHC) Health-Related Social Needs Screening Tool (HRSN) assessing social isolation, food insecurity, transportation, and paying for basic needs, such as housing and medical care. In this study, we describe the process of implementing this screener and collecting initial pilot data from 747 patients between October 2022 and April 2023 across the LEND and the primary care practice. We also highlight the challenges and opportunities identified during the mid-way point of implementation and pilot testing. The results of this pilot study revealed low response rates among SDOH screeners, spurring several measures to increase uptake, including increasing the accessibility of the screener and ensuring the screener results in effective referrals. We call on additional Med-Peds healthcare teams without universal SDOH screening protocols in place - particularly those serving the I/DD population - to consider adopting these practices.

A Qualitative Investigation on COVID-19 Vaccine Hesitancy in Neurodivergent Communities.

Vaccine hesitancy is a major barrier to vaccination, hindering the success of vaccine efforts and thereby increasing public health risk to viral diseases, including COVID-19. Neurodivergent (ND) individuals, including individuals with an intellectual and/or developmental disability, have demonstrated a heightened risk of hospitalization and death due to COVID-19, highlighting the need for further research specifically on ND communities. We conducted a qualitative analysis using in-depth interviews with medical professionals, non-medical health professionals and communicators, and ND individuals or their caregivers. Using a thematic coding analysis methodology, trained coders identified major themes according to 24 distinct codes spanning across the categories of (1) barriers to vaccination; (2) facilitators to vaccination; and (3) suggestions for improving vaccine confidence. Qualitative findings identify misinformation, perception of vaccine risk, sensory sensitivities, and structural hardship as the most significant barriers to COVID-19 vaccination. We highlight the importance of accommodations to vaccination for the ND community alongside coordinated efforts by healthcare leaders to direct their communities to accurate sources of medical information. This work will inform the direction of future research on vaccine hesitancy, and the development of programs specific to the ND community's access to vaccines.

Anxiety and Depression in Autistic College Students: The Freshman Survey Results.

Objective Mental health among undergraduate students is a growing concern in higher education, but relatively little is known about the mental health of autistic college students. In order to better understand the unique needs of this population, the present study examines whether demographic and psychosocial correlates of anxiety and depression differ in autistic first-year college students and their non-autistic peers.  Methods Secondary data analysis was conducted utilizing population-weighted data of full-time college students in their first year attending four-year colleges and universities in 2016, 2018, and 2019. Autistic and non-autistic students who self-identified as having frequent anxiety or depression were compared in terms of demographic characteristics, physical and emotional health, and academic aspirations and achievement. Results The majority of first-year students with frequent anxiety or depression in this sample tended to be white and had parents who completed a bachelor's degree or went to graduate school, with higher rates of male students in the autistic group. While autistic college freshmen with frequent anxiety or depression self-report lower overall quality of physical health (below average or lowest 10% reported by 57.3% vs. 37.1%) and higher rates of learning disabilities (25.3% vs. 4.6%) and psychological disorders (62.3% vs. 29.3%), these students also tend to outperform their non-autistic peers on standardized academic testing. Conclusion As autistic students are investing in themselves through their education and future careers, practitioners and researchers alike should be investing in accessible physical and mental health services in order to help set autistic students up for success in college and beyond.

Evidence from the Autism Transitions Research Project (2017-2022): Capstone review and services research recommendations.

Few funding sources have explicitly supported systems-wide research to identify mechanisms for improving access, service delivery, outcomes and wellbeing for autistic transition-age youth and young adults. We aimed to integrate findings from research produced through a five-year federal Autism Transition Research Project (ATRP) cooperative agreement. This capstone review sought to: (1) map the body of scientific evidence that emerged from this federal award, and (2) identify remaining evidence gaps to inform future autism transition services research. We used scoping review methods to assess 31 ATRP-funded published scientific studies. We charted study characteristics, topical domains, socio-ecological levels of variables, focus on equity, and inclusion of autistic participants. We evaluated how these topics were addressed across studies to identify continued gaps in the evidence base. Compared to prior published reviews and research agendas, we found improvements in characterization of study participants, broader examination of socio-ecological correlates, and examination of multiple outcome domains. However, we also identified continued deficits in inclusion of autistic study participants, use of multisectoral data, and research with a strong focus on equity. Our recommended priorities for autism transition services research to facilitate healthy life outcomes and wellbeing included: continued analysis of population-level data and improved data infrastructure; development of service delivery methods and interventions that target marginalized groups; expanded research to inform improvements in the performance and coordination of complex service ecosystems that interface with autistic youth; and bolstering the roles of autistic research participants.

A mixed methods investigation of college student mental health during the first year of the COVID-19 pandemic.

OBJECTIVE: Researchers collaborated with undergraduate minority students to quantitatively and qualitatively investigate college students' mental health during the first year of the COVID-19 pandemic. PARTICIPANTS: Participants were two convenience samples of diverse college students surveyed in June (n = 128; M age = 21.7, SD = 1.7) and December (n = 242; M age = 20.3, SD = 1.7) of 2020. METHODS: This study administered items from the California Health Interview Survey and open-ended qualitative items via Qualtrics. RESULTS: Across both waves, students reported significant mental health challenges and psychological distress. Students surveyed in December were three to four times more likely to report depression and anxiety. Female and older students reported heightened odds of mental health challenges. Qualitative findings elaborated on contributing factors. CONCLUSION: During the pandemic, college students have experienced pronounced mental health challenges, potentially exacerbated by academic, professional, relational, and environmental stressors and uncertainty.