Literature Collection

The underrepresentation of individuals with profound autism (who require 24/7 access to care) in autism research has resulted in limited knowledge about their service needs and a lack of evidence-based practices tailored to those needs. This study explored caregiver perspectives on service needs, barriers to accessing care, and treatment priorities to guide treatment development and improvement of service delivery. A sequential mixed-methods design integrated quantitative survey data (n = 423; Mage = 18.89 years; 26.7% female) with qualitative interviews (n = 20) with caregivers of adolescents and adults with profound autism. Quantitative findings indicated regular socialization opportunities were the most frequently endorsed unmet service need (60.3% of caregivers), followed by primary health care with autism-trained staff (59.3%), social skills instruction (55.8%), life skills instruction (51.3%), and behavioral support (47.3%). Higher likelihood of needing social activity groups was associated with elevated emotional reactivity, higher language level, minoritized ethnicity, and lower household income. Greater need for specialized primary health care was associated with lower income, while the need for social and life skills instruction was associated with increased age and elevated dysphoria. Qualitative analysis identified 10 themes that converged and expanded quantitative findings by highlighting a pervasive shortage of individualized, goal-oriented services, common barriers to care, and the priority of developing centralized treatment settings that coordinate care throughout adulthood. This study identified pressing service needs for adolescents and adults with profound autism in the United States. These insights are crucial for improving the accessibility and quality of clinical care.

BACKGROUND: Since the COVID-19 pandemic, telemedicine has been widely integrated into primary care pediatrics. While initial studies showed some concern for disparities in telemedicine use, telemedicine uptake for pediatric patients in a low-income, primarily Latino community over a sustained period has yet to be described. OBJECTIVE: We aimed to assess the relationship between demographics, patient portal activation, and telemedicine visits, as well as characterize diagnoses addressed in telemedicine, in a low-income, primarily Latino population over time. METHODS: A multidisciplinary team conducted outreach for telemedicine and patient portal activation with the adoption of a new electronic health record. Data were collected on all in-person and telemedicine visits from February 2020 through April 2021 for 4 community-based pediatric practices. The outcomes included patient portal activation, telemedicine use, and reason for telemedicine visits. Bivariate tests and multivariate regression analyses were conducted to assess the independent effects of demographics on the likelihood of portal activation and having a telemedicine visit. Telemedicine diagnoses were categorized, and subanalyses were conducted to explore variations by age and month. RESULTS: There were 12,377 unique patients and 7127 telemedicine visits. Latino patients made up 83.4% (n=8959) of the population. Nearly all patients (n=10,830, 87.5%) had an activated portal, and 33.8% (n=4169) had at least 1 telemedicine visit. Portal activation decreased with age >2 years (2-4 years: adjusted odds ratio [aOR] 0.62, 95% CI 0.51-0.76; 5-11 years: aOR 0.28, 95% CI 0.23-0.32; 12-14 years: aOR 0.29, 95% CI 0.23-0.35; and 15-17 years: aOR 0.46, 95% CI 0.36-0.58). Spanish-speaking (aOR 0.52, 95% CI 0.45-0.59) and non-Latino patients (aOR 0.64, 95% CI 0.54-0.76) had decreased odds of activation and having a telemedicine visit (aOR 0.81, 95% CI 0.74-0.89 and aOR 0.71, 95% CI 0.62-0.81, respectively). The top 5 diagnostic categories for telemedicine were infectious disease (n=1749, 26.1%), dermatology (n=1287, 19.5%), gastrointestinal (n=771, 11.7%), well and follow-up care (n=459, 7%), and other specialty-related care (n=415, 6.3%). Infectious disease showed the most variation over time. Age-based patterns included a decrease in the proportion of infectious disease diagnoses by increasing age group and a higher proportion of well and follow-up care in older ages. Additional telemedicine diagnoses included common infant concerns for patients younger than 2 years of age; pulmonary, asthma, and allergy concerns for toddler or school-age children; behavioral health concerns for younger adolescents; and genitourinary and gynecologic concerns for older adolescents. CONCLUSIONS: The high engagement across demographics suggests feasibility and interest in telemedicine in this low-income, primarily Latino population, which may be attributable to the strength of outreach. Language-based disparities were still present. Telemedicine was used for a wide range of diagnoses. As telemedicine remains a vital component of pediatric health care, targeted interventions may enhance engagement to serve diverse pediatric patient populations.

BACKGROUND: Management of idiopathic intracranial hypertension (IIH) is complex requiring contributions from multiple specialized disciplines. In practice, this creates considerable organizational and communicational challenges. To meet those challenges, we established an interdisciplinary integrated outpatient clinic for IIH with a central coordination and a one-stop- concept. Here, we aimed to evaluate effects of this concept on sick leave, presenteeism, and health care utilization. METHODS: In a retrospective cohort study, we compared the one-stop era with integrated care (IC, 1-JUL-2021 to 31-DEC-2022) to a reference group receiving standard care (SC, 1-JUL-2018 to 31-DEC-2019) regarding economic outcome parameters assessed over 6 months. Multivariate binary logistic regression models were used to adjust for confounders. RESULTS: Baseline characteristics of the IC group (n = 85) and SC group (n = 81) were comparable (female: 90.6% vs. 90.1%; mean age: 33.6 vs. 32.8 years, educational level: ≥9 years of education 60.0% vs. 59.3%; located in Vienna 75.3% vs. 76.5%). Compared to SC, the IC group showed significantly fewer days with sick leave or presenteeism (-5 days/month), fewer unscheduled contacts for IIH-specific problems (-2.3/month), and fewer physician or hospital contacts in general (-4.1 contacts/month). Subgroup analyses of patients with migration background and language barrier consistently indicated stronger effects of the IC concept in these groups. CONCLUSIONS: Interdisciplinary integrated management significantly improves the burden of IIH in terms of sick leave, presenteeism and healthcare consultations - particularly in socioeconomically underprivileged patient groups.

OBJECTIVE:  Individual patient-level measures of adverse social determinants of health are associated with neonatal opioid withdrawal syndrome (NOWS), but the relative impact of community-level adverse social determinants of health remains to be defined. We examined the association between community-level social vulnerability and NOWS among pregnant individuals receiving buprenorphine for opioid use disorder. STUDY DESIGN:  We conducted a secondary analysis of an established cohort of pregnant individuals and their infants participating in a multidisciplinary prenatal/addiction care program from 2013 to 2021. Addresses were geocoded using ArcGIS and linked at the census tract to the Centers for Disease Control and Prevention 2018 Social Vulnerability Index (SVI), incorporating 15 census variables. The primary exposure was the SVI as a composite measure of community-level social vulnerability, and secondarily, individual scores for four thematic domains (socioeconomic status, household composition and disability, minority status and language, and housing type and transportation). The primary outcome was a clinical diagnosis of NOWS defined as withdrawal requiring pharmacological treatment following buprenorphine exposure. RESULTS:  Among 703 pregnant individuals receiving buprenorphine, 39.8% (280/703) of infants were diagnosed with NOWS. Among our patinets, those who were nulliparous, had post-traumatic stress disorder, a term birth (≥ 37 weeks) and had a male infant were more likely to have an infant diagnosed with NOWS. Individuals with and without an infant diagnosed with NOWS had similarly high community-level social vulnerability per composite SVI scores (mean [standard deviation]: 0.6 [0.4-0.7] vs. 0.6 [0.4-0.7], p = 0.2]. In adjusted analyses, SVI, as a composite measure as well as the four domains, was not associated with NOWS diagnosis. CONCLUSION:  Among pregnant persons receiving buprenorphine enrolled in a multidisciplinary prenatal and addition care program, while individual risk factors that measure adverse social determinants of health were associated with an NOWS diagnosis in the infant, community-level social vulnerability as measured by the SVI was not associated with the outcome. KEY POINTS: · Community-level SVI was not associated with neonatal opioid use disorder.. · Certain individual risk factors were identified as being associated with NOWS.. · Homogeneity of composite SVI scores may have led to lack of significant findings..

OBJECTIVES: This study explores knowledge and utilization of, barriers to, and preferences for harm reduction services among street-involved young adults (YA) in Boston, Massachusetts. METHODS: This cross-sectional survey of YA encountered between November and December 2019 by a longstanding outreach program for street-involved YA. We report descriptive statistics on participant-reported substance use, knowledge and utilization of harm reduction strategies, barriers to harm reduction services and treatment, and preferences for harm reduction service delivery. RESULTS: The 52 YA surveyed were on average 21.4 years old; 63.5% were male, and 44.2% were Black. Participants reported high past-week marijuana (80.8%) and alcohol (51.9%) use, and 15.4% endorsed opioid use and using needles to inject drugs in the past six months. Fifteen (28.8%) YA had heard of "harm reduction", and 17.3% reported participating in harm reduction services. The most common barriers to substance use disorder treatment were waitlists and cost. Participants suggested that harm reduction programs offer peer support (59.6%) and provide a variety of services including pre-exposure prophylaxis (42.3%) and sexually transmitted infection testing (61.5%) at flexible times and in different languages, including Spanish (61.5%) and Portuguese (17.3%). CONCLUSIONS: There is need for comprehensive, YA-oriented harm reduction outreach geared toward marginalized YA and developed with YA input to reduce barriers, address gaps in awareness and knowledge of harm reduction, and make programs more relevant and inviting to YA.

INTRODUCTION: Many young children with mental health or developmental concerns go unidentified and untreated, underscoring the need for effective screening. Primary care offers unique opportunities for screening, yet rates are low. Primary care providers often cite time constraints, insufficient training, and costs as barriers to screening. Tools designed for administration by primary care providers hold promise for facilitating personalized assessments and improving communication, collaboration, and follow-up between providers and families. To improve early identification and intervention, it is crucial to understand provider-administered screening tools that align with their practical constraints. AIM: To identify and describe the characteristics, limitations, and improvement areas of brief, multidimensional screening for young children's mental health and development, designed for administration by primary care providers. METHODS: We conducted a scoping review according to published guidelines. We searched seven electronic databases and used hand-searching strategies. We sought English-language publications on screening tools (English or French) assessing at least one mental health and one development domain in children up to 6 years, designed for administration by primary care providers in under 20 minutes. Two reviewers assessed the articles' eligibility and then extracted, charted, and summarized relevant data. RESULTS: Three screening tools from six articles were included. The tools were primarily administered by physicians or nurses to children aged 2 weeks to 4 years and required minimal training to use. The tools varied in their domains (4-6), items (10-110), psychometric properties, and scoring methods, but all included indicators of delayed or at-risk children. Article limitations included study recency and lack of data related to implementation and patient outcomes. CONCLUSIONS: This review described the development and evaluation of multidimensional screening tools for young children's mental health and development designed for administration by primary care providers. It found that few tools have been published. This review identifies several knowledge gaps and emphasizes the need for research on the implementation, cost-effectiveness, and comparative performance of screening tools, as well as the development and evaluation of new screening tools that suit providers' needs. Future studies should investigate how these screening tools can improve identification, clinical care, and health outcomes.

Older adults living with frailty and multimorbidity interact with multiple care providers and health settings, resulting in fragmented care and information discontinuity. Standardized assessments potentiate integrated care by communicating consistent measures of health information between sectors and providers. We use a pragmatic case example of a theoretical medically complex older adult to illustrate use of interRAI standardized assessments throughout the health journey. The case example represents the assessment findings of a patient accessing care through primary care, the emergency department, home/community care and long-term care. A suite of assessment instruments embedded with decision support algorithms guides nursing care decisions, while a common language and standardized assessment items support effective communication and collaboration among the health team. Successful adoption of integrated and comprehensive assessment tools requires training, engagement, and time to embed processes into practice. interRAI assessments enable integration through a common language, aligning successive assessments across the care continuum.

BACKGROUND: The Affordable Care Act (ACA) aimed to expand mental health service use in the US, by expanding access to health insurance. However, the gap in mental health utilization by race and ethnicity is pronounced: members of racial and ethnic minoritized groups remain less likely to use mental health services than non-Hispanic White individuals even after the ACA. AIMS OF THE STUDY: This study assessed the effect of the Affordable Care Act (ACA) on mental health services use in one large state (California), and whether that effect differed among racial and ethnic groups. Also, it tested for change in racial and ethnic disparities after the implementation of the ACA, using four measures of mental health care. METHODS: Using pooled California Health Interview Survey (CHIS) data from 2011-2018, logistic regression and Generalized Linear Models (GLM) were estimated. Disparities were defined using the Institute of Medicine (IOM) definition. Primary outcomes were any mental health care in primary settings; in specialty settings, any prescription medication for mental health problems, and number of annual visits to mental health services. RESULTS: Findings suggested that the change in Hispanic-non-Hispanic White disparities in prescription medication use under the ACA was statistically significant, narrowing the gap by 7.23 percentage points (p<.05). However, the disparity in other measures was not significantly reduced. DISCUSSION: These findings suggest that the magnitude of the increase in primary and specialty mental health services among racial and ethnic minorities was not large enough to significantly reduce racial and ethnic disparities. One possible explanation is that non-financial factors played a role, such as language barriers, attitudinal barriers from home culture norms, and systemic barriers due to mental health professional shortages and a limited number of mental health care providers of color. IMPLICATIONS FOR HEALTH CARE PROVISION AND USE: Integrated approaches that coordinate specialty and primary care mental health services may be needed to promote mental healthcare access for members of racial and ethnic minoritized groups. IMPLICATIONS FOR HEALTH POLICIES: Federal and state policies aiming to improve mental health services use have historically given more weight to financial determinants, but this has not been enough to significantly reduce racial/ethnic disparities. Thus, policies should pay more attention to non-financial determinants. IMPLICATIONS FOR FURTHER RESEARCH: Assessing underlying mechanisms of non-financial factors that moderate the effectiveness of the ACA is a worthwhile goal for future research. Future studies should examine the extent to which non-financial factors intervene in the relationship between the implementation of the ACA and mental health services use.

OBJECTIVE: The objective of this Clinical Update is to review the principles, structures, processes, and outcomes of collaborative mental health care in the pediatric primary care setting. METHOD: A search of the literature on this topic from 2001was conducted initially in 2016, yielding 2,279 English-language citations. These citations were supplemented by references suggested by topic experts and identified through Web searches, increasing the yield to 2,467 total citations, of which 1,962 were unduplicated. After sequential review by Update authors at title/abstract and then full-text levels, the citations were winnowed to 219 based on topic relevance. A follow-up search from 2016 was conducted in 2021, yielding 2 additional citations based on nonduplication from initial search and topic relevance. RESULTS: The collaborative care approach, arising in the 1990s and gaining momentum in the 2000s, aims to extend behavioral health care to the primary care setting. The goal of collaborative care is to conserve the sparse specialty care workforce for severe and complex psychiatric disorders through shifting certain specialty mental health tasks (eg, assessment; patient self-management; brief psychosocial intervention; basic psychopharmacology; care coordination) to primary care. Collaborative care can be delivered on a spectrum ranging from coordinated to co-located to integrated care. Although each of these models has some empirical support, integrated care-a multidisciplinary team-based approach-has the strongest evidence base in improving clinical outcomes and patient satisfaction while constraining costs. Challenges to integrated care implementation include insufficient mental health education and insufficient specialist consultative and care coordination support for primary care practitioners; space, time, and reimbursement constraints in the primary care setting; discomfort among primary care practitioners in assuming mental health tasks previously undertaken by specialists; and continuing need for and unavailability of ongoing specialty mental health care for severe and complex cases. Essential supporting activities for effective collaborative care include patient and family engagement, professional education and training, evaluation/demonstration of impact, fiscal sustainability, and advocacy for model dissemination. CONCLUSION: Health professionals who are educated in the collaborative care approach can improve access to and quality of behavioral health care for children and adolescents with behavioral health needs.

BACKGROUND: Many allied health services now provide both telehealth and in-person services following a rapid integration of telehealth as a response to the COVID-19 pandemic. However, little is known about how decisions are made about which clinical appointments to provide via telehealth versus in person. OBJECTIVE: The aim of this study is to explore clinicians' decision-making when contemplating telehealth for their clients, including the factors they consider and how they weigh up these different factors, and the clinicians' perceptions of telehealth utility beyond COVID-19 lockdowns. METHODS: We used reflexive thematic analysis with data collected from focus groups with 16 pediatric community-based allied health clinicians from the disciplines of speech-language pathology, occupational therapy, social work, psychology, and counseling. RESULTS: The findings indicated that decision-making was complex with interactions across 4 broad categories: technology, clients and families, clinical services, and clinicians. Three themes described their perceptions of telehealth use beyond COVID-19 lockdowns: "flexible telehealth use," "telehealth can be superior to in-person therapy," and "fear that in-person services may be replaced." CONCLUSIONS: The findings highlight the complexity of decision-making in a community-allied health setting and the challenges experienced by clinicians when reconciling empirical evidence with their own clinical experience.

AIM: To tailor an existing Person-Centred Integrated Care (PC-IC) approach to the needs of patients with low socioeconomic status (LSES) and chronic conditions in primary care. BACKGROUND: While Disease Management Programs (DMPs) have been introduced to reduce the burden of chronic diseases, their effectiveness for patients with LSES remains uncertain due to insufficient attention to the individual context. A PC-IC approach may enhance patient outcomes by addressing patients' cultural backgrounds, values, and health literacy needs, because these factors are particularly relevant for patients with LSES. METHOD: A qualitative study was conducted using three co-creation sessions with patients with LSES and chronic conditions, along with general practitioners and practice nurses, to adapt, develop, and test specific elements of the PC-IC approach. Participatory learning and action (PLA) techniques incorporating visual materials were employed to ensure meaningful engagement and input by all participants, including those with limited reading and language skills. Following these sessions, we conducted a validation check by patients on the draft materials. FINDINGS: In the co-creation sessions, an existing PC-IC approach was tailored to the needs of LSES patients with chronic conditions in primary care. The adapted PC-IC approach emphasized key elements as trust, being seen as a person in the social context, shared decision-making, and access to clear and easily understandable information. Existing materials needed to be adapted, resulting in a visual conversation tool. This tool covers the physical, social, and mental health domains as well as daily life, each domain with six to eight topics. It helps to get better insight into the patient's daily life, wishes, and possibilities. It maps medical and psychosocial issues and supports the patient in gaining a better understanding. The adapted PC-IC approach with the conversation tool is being presented in a training for primary care professionals.