Community Health Workers in Early Childhood Well-Child Care for Medicaid-Insured Children: A Randomized Clinical Trial.

Importance: An intervention model (the Parent-focused Redesign for Encounters, Newborns to Toddlers; the PARENT intervention) for well-child care that integrates a community health worker into preventive care services may enhance early childhood well-child care. Objective: To examine the effectiveness of the PARENT intervention vs usual care for parents with children younger than 2 years of age. Design, Setting, and Participants: A cluster randomized clinical trial was conducted between March 2019 and July 2022. Of the 1283 parents with a child younger than 2 years of age presenting for a well-child visit at 1 of the 10 clinic sites (2 federally qualified health centers in California and Washington) approached for trial participation, 937 were enrolled. Intervention: Five clinics implemented the PARENT intervention, which is a team-based approach to care that uses a community health worker in the role of a coach (ie, health educator) as part of the well-child care team to provide comprehensive preventive services, and 5 clinics provided usual care. Main Outcomes and Measures: There were 2 primary outcomes: score for parent-reported receipt of recommended anticipatory guidance during well-child visits (score range, 0-100) and emergency department (ED) use (proportion with ≥2 ED visits). The secondary outcomes included psychosocial screening, developmental screening, health care use, and parent-reported experiences of care. Results: Of the 937 parents who were enrolled, 914 remained eligible to participate (n = 438 in the intervention group and n = 476 in the usual care group; 95% were mothers, 73% reported Latino ethnicity, and 63% reported an annual income <$30 000). The majority (855/914; 94%) of the children (mean age, 4.4 months at parental enrollment) were insured by Medicaid. Of the 914 parents who remained eligible and enrolled, 785 (86%) completed the 12-month follow-up interview. Parents of children treated at the intervention clinics (n = 375) reported receiving more anticipatory guidance than the parents of children treated at the usual care clinics (n = 407) (mean score, 73.9 [SD, 23.4] vs 63.3 [SD, 27.8], respectively; adjusted absolute difference, 11.01 [95% CI, 6.44 to 15.59]). There was no difference in ED use (proportion with ≥2 ED visits) between the intervention group (n = 376) and the usual care group (n = 407) (37.2% vs 36.1%, respectively; adjusted absolute difference, 1.2% [95% CI, -5.5% to 8.0%]). The effects of the intervention on the secondary outcomes included a higher amount of psychosocial assessments performed, a greater number of parents who had developmental or behavioral concerns elicited and addressed, increased attendance at well-child visits, and greater parental experiences with the care received (helpfulness of care). Conclusions and Relevance: The intervention resulted in improvements in the receipt of preventive care services vs usual care for children insured by Medicaid by incorporating community health workers in a team-based approach to early childhood well-child care. Trial Registration: ClinicalTrials.gov Identifier: NCT03797898.

Development and validation of the University of Washington caregiver stress and benefit scales for caregivers of children with or without serious health conditions.

PURPOSE: To develop item response theory (IRT)-based item banks and short forms to measure stress and benefit related to caregiving for children, including children with epilepsy or other serious health conditions. METHODS: Items developed with feedback from neurologists and caregivers of children with epilepsy were tested in cognitive interviews and administered to caregivers of children with severe epilepsy (N = 128), down syndrome (N = 143) and muscular dystrophy (N = 129), as well as a community sample of US caregivers (N = 322). IRT was used to analyze the data. Test-retest reliability was assessed using a two-way random effects (2,1) intraclass correlation coefficient (ICC). Validity was assessed by a pattern of correlations with relevant constructs (stress, depression, anxiety, and resilience) and by the pattern of scores by known groups. RESULTS: Caregivers of children with serious health conditions reported more stress and less benefit than the general sample. The final caregiver stress item bank (k = 19) and the caregiver benefit item bank (k = 13) were calibrated using IRT and centered on a sample of community caregivers representative of the US general caregiver population. Short form scores are highly correlated with full bank scores (r ≥ 0.98) and IRT reliability exceed 90% for most levels. Test-retest reliability was high (ICC > 0.92) for banks and short forms. CONCLUSIONS: Results provide strong support for reliability and validity of the caregiver stress and benefit scores. Instruments are publicly available, flexible, brief, and provide reliable and valid scores of caregiver stress and benefit of caregivers of children with and without serious health conditions.

Factors associated with disease self-efficacy in individuals aging with a disability.

Self-management of a disability consists of treatment adherence, obtaining information about the disease and treatment options, caring for oneself, participating in decisions, and maintaining social relationships and emotional balance. Understanding and measuring an individual's beliefs about their ability to successfully self-manage and live well with a disability allows researchers and clinicians to better target interventions aimed at increasing disability management self-efficacy (DMSE). The purpose of this study was to examine the associations between demographic and clinical indicators, and self-efficacy for DMSE in individuals with chronic physical conditions. Adults (N = 815) with muscular dystrophy, multiple sclerosis, spinal cord injury, or post-polio syndrome completed a self-report mailed survey assessing DMSE, perceived social support, depression symptoms, resilience, fatigue, pain interference, satisfaction with participation in social roles, physical function, and demographics. A cross-sectional regression model was used to examine the associations between the clinical and demographic factors, and DMSE. The model explained 67% of the variance in DMSE. Satisfaction with participation in social roles, resilience, pain interference, social support, and fatigue were statistically significant. Better social functioning, more resilience, and less pain and fatigue were most strongly associated with DMSE. Interventions aimed at increasing DMSE should include strategies for improving social participation.

Content development, accessibility and feasibility of a self-report tool for use in programmes serving youth with cognitive disabilities: The Participatory Experience Survey.

INTRODUCTION: Participation in community-based recreation and leisure activities may afford valuable opportunities to young people with cognitive disabilities (CD) to develop important self-determination skills needed for success in adulthood. To evaluate whether these programmes are achieving their intended impact, it is important to have a tool that captures the perspective of the participants using an accessible method. This article describes the content development and evaluation of accessibility and feasibility of the Participatory Experience Survey (PES). METHOD: Participant observation and focus group sessions were conducted in conjunction with a summer youth programme hosted by a special education advocacy organisation. Photos were used to guide identification of factors influencing both negative and positive experiences. Findings informed question content. Three groups of stakeholders, parents of youth with CD (Group 1), service providers (Group 2), and experts in cognitive disability and/or programme planning (Group 3) reviewed the PES to provide feedback on the relevance and accessibility of the measure. After stakeholder feedback was incorporated, cognitive interviewing was conducted with young people with CD to assess instrument accessibility and appropriateness for use in context. RESULTS: Youth described their participation in three categories: personal, social and environmental. Stakeholder Groups 1 and 2 identified 15 questions as needing revisions. Seven additional questions were added based on suggestions from stakeholder Group 3. Cognitive interviewing led to revision of 13 questions and removal of 16 questions due to issues related to vocabulary, item meaning, response bias, repetitiveness and length. CONCLUSION: The PES has the potential to offer programmes a means to more fully include young people with disabilities in programme evaluations, leading to better-structured, more supportive programmes. Additional validity and feasibility work is needed to confirm these initial findings.

Life impact of caregiving for severe childhood epilepsy: Results of expert panels and caregiver focus groups.

Severe epilepsy in children and young adults can significantly affect the lives of their caregivers. However, the lack of a reliable and valid measure of caregiver impact has limited our understanding of the scope and correlates of this impact, as well as our ability to measure the effects of treatments that could lessen it. The purpose of this study was to facilitate focus groups and interviews with an international group of clinician experts and caregivers to identify the most important domains that should be assessed in a measure of caregiver impact. Ten specific subdomains emerged from the panel discussions, which could be classified into the four overarching categories of physical health, mental health, social function, and financial resources. The caregivers highlighted the impact on the subdomains of sleep and fatigue as most critical. A review of existing caregiver impact measures confirmed that there is no measure currently available that assesses all of these relevant domains, indicating the need for the development of such a measure. The current findings highlight the significant life effects of caring for a child with severe epilepsy and can be used to inform the development of such a tool.

Validity, reliability, and usability of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test for autism spectrum disorders.

AIM: This study aimed to explore the test-retest reliability of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test for autism spectrum disorders (PEDI-CAT [ASD]), the concurrent validity of this test with the Vineland Adaptive Behavior Scales (VABS-II), and parents' perceptions of usability. METHOD: A convenience sample of participants (n=39) was recruited nationally through disability organizations. Parents of young people aged 10 to 18 years (mean age 14y 10mo, SD 2y 8mo; 34 males, five females) who reported a diagnosis of autism were eligible to participate. Parents completed the VABS-II questionnaire once and the PEDI-CAT (ASD) twice (n=29) no more than 3 weeks apart (mean 12d) using computer-simulated administration. Parents also answered questions about the usability of these instruments. We examined score reliability using intraclass correlation coefficients (ICCs) and we explored the relationship between instruments using Spearman's rank correlation coefficients. Parent responses were grouped by common content; content categories were triangulated by an additional reviewer. RESULTS: Intraclass correlation coefficients indicate excellent reliability for all PEDI-CAT (ASD) domain scores (ICC ≥ 0.86). PEDI-CAT (ASD) and VABS-II domain scores correlated as expected or stronger than expected (0.57-0.81). Parents reported that the computer-based PEDI-CAT (ASD) was easy to use and included fewer irrelevant questions than the VABS-II instrument. INTERPRETATION: These findings suggest that the PEDI-CAT (ASD) is a reliable assessment that parents can easily use. The PEDI-CAT (ASD) operationalizes the International Classification of Function, Disability and Health for Children and Youth constructs of 'activity' and 'participation', and this preliminary research suggests that the instrument's constructs are related to those of VABS-II.

Association between impairment, function, and daily life task management in children and adolescents with autism.

AIM: This cross-sectional study examined whether impairments or functional skills are associated with the level of responsibility for life tasks for children and adolescents with autism spectrum disorders (ASDs). METHOD: Parents of 263 children and adolescents with ASDs (215 males; 48 females; mean age 12y 6mo [SD 4y 6mo], range 3-21y) completed an online survey that included the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test - Autism Spectrum Disorders (PEDI-CAT-ASD) Daily Activities, Social/Cognitive, and Responsibility domains, a demographic questionnaire, and the Social Communication Questionnaire (SCQ) Current. The International Classification of Functioning, Disability and Health Framework guided the selection of model variables. We used hierarchical multiple regression to examine the relationship between impairment and functional skill predictor variables and the outcome variable, Responsibility. Age was entered in step 1 to control for the impact of development. SCQ Current, IQ, and remaining PEDI-CAT-ASD domains were then entered in step 2. RESULTS: After controlling for age, the model showed that step 2 predictor variables representing both impairments and functional skill improved the model (p<0.001). All variables except the SCQ score were significant predictors of Responsibility. The variance explained by the Daily Activities (2.7%) and Social/Cognitive (4.8%) domain scores was greater than IQ (0.3%). INTERPRETATION: The functional skills of Daily Activities and Social/Cognitive domains were more strongly associated with the management of life tasks than impairments after controlling for age.

Examining differential responses of youth with and without autism on a measure of everyday activity performance.

PURPOSE: This study further investigated items with differential item function (DIF) in the Social/Cognitive domain of a measure of everyday activity performance, the Pediatric Evaluation of Disability Inventory-Computer Adapted Test version for Autism "PEDI-CAT (ASD)," to understand possible sources of response variation in a heterogeneous sample of youth with autism compared to the national standardization sample. METHODS: Cross-sectional design. A convenience sample of parents who identified they had a child between 3 and 21 years (M = 11.9 years, SD = 4.67 years) with autism (n = 365) completed an online survey that included the PEDI-CAT (ASD) and descriptive measures. For 28 items previously identified as having DIF, the PEDI-CAT (ASD) expected item score curves for the autism sample were compared to the original PEDI-CAT standardization sample. The weighted area between expected score curves (wABC) was also calculated; values >0.24 indicate significant DIF. RESULTS: All items had wABC that exceeded the criterion. Compared with peers without disabilities at the same ability level, 11 items were significantly more difficult for the youth with autism and 16 items were significantly easier. One item demonstrated non-uniform DIF. CONCLUSION: Differential responses could indicate that: (1) children with autism have a different developmental pattern of skill acquisition for everyday activities in the Social/Cognitive domain, or (2) parents of children with autism utilize a unique appraisal process when assessing their children's functional performance of everyday activities. Further research is required to better understand the factors leading to differential responses on the targeted items. The study illustrates the value of in-depth analysis of DIF to gain insight into the impact of a clinical condition on functional performance.

Community participation, supports, and barriers of school-age children with and without disabilities.

OBJECTIVE: To examine patterns of community participation and environmental factors that affect community participation for school-age children with and without disabilities. DESIGN: Cross-sectional, descriptive, and exploratory study. SETTING: Parents from the United States and Canada completed the main outcome measure online in their homes or communities. PARTICIPANTS: Parents (N=576) reported on their children aged 5 to 17 years with disabilities (n=282) and without disabilities (n=294). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Participation and Environment Measure for Children and Youth. RESULTS: Group differences in summary scores and many items were significant (P<.001). Children with disabilities participated less frequently, were less involved, and had less environmental support in the community than children without disabilities. Parents of children with disabilities desired more change in their child's participation than parents of children without disabilities. Effect sizes for summary scores were moderate to very large (n(2)p from .11-.40), with the largest group difference found in environment scores. Overall, the largest group differences in participation were in "unstructured physical activities" and "getting together with other children"-also the 2 areas where parents of children with disabilities most frequently desired change. The largest differences in environmental impact were in physical, social, and cognitive activity demands and availability/adequacy of programs and services. CONCLUSIONS: Results provide insights about where greater efforts are needed to support community participation of school-age children with disabilities. Further study with a more diverse sample in terms of race/ethnicity, family income/education levels, and geographic region is needed to determine the extent to which results may be generalized.

Time Spent at Well-Child Care Visits for English- and Spanish-Speaking Parents.

OBJECTIVE: To measure duration of well-child care (WCC) visits at 2 federally qualified health centers (FQHCs), across 10 clinic sites, and determine if differences exist in visit duration for English- and Spanish-speaking parents. METHODS: Upon arrival to their child's 2- to 24-month well visit, a research team member followed families throughout their visit noting start and end times for a series of 5 WCC visit tasks. The average time to complete each visit task for the entire sample was then calculated. Mann-Whitney U tests were run to determine if task completion time differed significantly between English- and Spanish-speaking parents. RESULTS: The total sample included 199 parents of infants and children between 2 and 24 months old. Over one third of the sample spoke Spanish as their primary language (37%). The average visit time was 77 minutes (standard deviation [SD] = 48). Median time spent with the clinician was 14 minutes (SD = 5). Clinician visit time was significantly different U = 2608, P < .001, r = 0.38 between English- (median = 15 minutes) and Spanish (median = 11 minutes)-speaking parents. No other significant differences were identified. DISCUSSION: Our findings align with previous studies showing the average time spent with a clinician during a WCC visit was 15 minutes. Further, the average time with a clinician was less for Spanish-speaking parents. With limited visit length to address child and family concerns, re-designing the structure and duration of WCC visits is critical to best meet the needs of families living in poverty, and may ensure that Spanish-speaking parents receive appropriate guidance and support without time limitations.

Implementation of a community health worker-focused team-based model of care: What modifications do clinics make?

Background: Team-based care offers potential for integrating non-clinicians, such as community health workers (CHWs), into the primary care team to ensure that patients and families receive culturally relevant care to address their physical, social, and behavioral health and wellness needs. We describe how two federally qualified health center (FQHC) organizations adapted an evidence-based, team-based model of well-child care (WCC) designed to ensure that the parents of young children, aged 0-3, have their comprehensive preventive care needs met at WCC visits. Methods: Each FQHC formed a Project Working Group composed of clinicians, staff, and parents to determine what adaptations to make in the process of implementation of PARENT (Parent-Focused Redesign for Encounters, Newborns to Toddlers), a team-based care intervention that uses a CHW in the role of a preventive care coach. We use the Framework for Reporting Adaptations and Modifications to Evidence-based interventions (FRAME) to chronicle the various intervention modifications and the adaptation process, focusing on when and how modifications occurred, whether it was planned or unplanned, and the reasons and goals for the modification. Results: The Project Working Groups adapted several elements of the intervention in response to clinic priorities, workflow, staffing, space, and population need. Modifications were planned and proactive, and were made at the organization, clinic, and individual provider level. Modification decisions were made by the Project Working Group and operationalized by the Project Leadership Team. Examples of modifications include the following: (1) changing the parent coach educational requirement from a Master's degree to a bachelor's degree or equivalent experience to reflect the needs of the coach role; (2) the use of FQHC-specific templates for the coach's documentation of the pre-visit screening in the electronic health record; and (3) the use of electronic social needs referral tools to help the coach track and follow up on social need referrals. The modifications did not change the core elements (i.e., parent coach provision of preventive care services) or intervention goals. Conclusions: For clinics implementing team-based care interventions, the engagement of key clinical stakeholders early and often in the intervention adaptation and implementation process, and planning for intervention modifications at both at an organizational level and at a clinical level are critical for local implementation.

Text2Breathe: Text-Message Intervention for Parent Communication and Pediatric Asthma.

OBJECTIVE: Mobile health technology offers promise for reducing disparities in pediatric asthma care and outcomes by helping parents more effectively communicate with their children's primary care providers and manage their children's asthma. This study tested the impact of a text messaging program on emergency department utilization and asthma morbidity. METHODS: A randomized controlled trial enrolled 221 parents of Medicaid-insured children visiting the emergency departments of 2 urban children's hospitals in the Pacific Northwest for an asthma-related concern between September 2015 and February 2019. Standardized surveys were administered to parents at baseline and 12 months later to assess the primary outcomes of emergency department utilization and morbidity as well as primary care utilization, parent communication self-efficacy, and asthma self-management knowledge. The intervention group received brief in-person education on partnering with primary care providers, followed by 3 months of educational text messages. RESULTS: Participants were mostly female, English speakers, of minority race and ethnicity, and living below 200% of the federal poverty level. Negative binomial and linear regressions indicated no significant group differences in annual number of emergency department visits, morbidity, parent communication self-efficacy, or asthma self-management knowledge at 12 months' follow-up, adjusting for baseline covariates. Average annual rate of primary care visits for asthma was 35% higher in the intervention group compared to control group at follow-up (95% confidence interval 1.03-1.76, P = .03). CONCLUSIONS: This parent-focused text message intervention did not impact emergency department utilization or asthma morbidity; however, results suggest its potential for enhancing use of primary care for management of pediatric chronic conditions.

Research recruitment through the patient portal: perspectives of community focus groups in Seattle and Atlanta.

Objective: Research recruitment through patient portals (ie, patient-facing, web-based clinical interfaces) has the potential to be effective, efficient, and inclusive, but best practices remain undefined. We sought to better understand how patients view this recruitment approach. Materials and Methods: We conducted 6 focus groups in Atlanta, GA and Seattle, WA with members of patient advisory committees and the general public. Discussions addressed acceptability of patient portal recruitment and communication preferences. Focus groups were audio-recorded, transcribed, and analyzed using deductive and inductive codes. Iterative team discussions identified major themes. Results: Of 49 total participants, 20 were patient advisory committee members. Participants' mean age was 49 (range 18-74); 59% identified as non-Hispanic White and 31% as Black/African American. Participants were supportive of patient portal recruitment and confident that messages were private and legitimate. Participants identified transparency and patient control over whether and how to participate as essential features. Concerns included the frequency of research messages and the ability to distinguish between research and clinical messages. Participants also discussed how patient portal recruitment might affect diversity and inclusion. Discussion: Focus group participants generally found patient portal recruitment acceptable and perceived it as secure and trustworthy. Transparency, control, and attention to inclusiveness were identified as key considerations for developing best practices. Conclusion: For institutions implementing patient portal recruitment programs, continued engagement with patient populations can help facilitate translation of these findings into best practices and ensure that implemented strategies accomplish intended goals.

Can a Clinic-Based Community Health Worker Intervention Buffer the Negative Impact of the COVID-19 Pandemic on Health and Well-Being of Low-Income Families during Early Childhood.

We examined changes in self-reported mental health, physical health, and emotional support among low-income parents with children ages 0-2 years old from pre-pandemic to pandemic periods and compared changes in parental health among parents who did versus did not have access to a clinic-based community health worker intervention supporting parents at early childhood preventive care visits. We utilized longitudinal parent survey data from pre-COVID-19 and COVID-19 time periods from both the intervention and control arms of an existing cohort of parents enrolled in a 10-clinic cluster randomized controlled trial (RCT). At enrollment (pre-pandemic) and 12-month follow-up (pandemic), participants reported on mental health, physical health, and emotional support using PROMIS measures (n = 401). During the pre-pandemic portion, control and intervention group parents had similar mean T-scores for mental health, physical health, and emotional support. At follow-up, mean T-scores for mental health, physical health, and emotional support decreased across both control and intervention groups, but intervention group parents had smaller declines in mental health T-scores (p = 0.005). Our findings indicate that low-income parents with young children suffered significant declines in mental and physical health and emotional support during the pandemic and that the decline in mental health may have been buffered by the community health worker intervention.

Quality of Mobile Apps for Child Development Support: Search in App Stores and Content Analysis.

BACKGROUND: Following increases in smartphone access, more parents seek parenting advice through internet sources, including blogs, web-based forums, or mobile apps. However, identifying quality apps (ones that respond to the diverse experiences of families) for guidance on child development can be challenging. OBJECTIVE: This review of mobile health apps aimed to document the landscape, design, and content of apps in the United States available to parents as they promote their child's developmental health. METHODS: To understand the availability and quality of apps for early childhood health promotion, we completed a content analysis of apps in 2 major app stores (Google Play and Apple App stores). RESULTS: We found that most apps do not provide tailored experiences to parents, including cultural considerations, and instead promote generic guidance that may be useful to parents in some contexts. We discuss the need for an evaluative framework to assess apps aimed to support parents on child development topics. CONCLUSIONS: Future work is needed on how to support designers in this area, specifically related to avoiding potential burdens on users and providing culturally informed and equity-driven experiences.

mHealth Technology Design and Evaluation for Early Childhood Health Promotion: Systematic Literature Review.

BACKGROUND: Recent increases in smartphone ownership among underserved populations have inspired researchers in medicine, computing, and health informatics to design and evaluate mobile health (mHealth) interventions, specifically for those supporting child development and growth. Although these interventions demonstrate possible effectiveness at larger scales, few of these interventions are evaluated to address racial disparities and health equity, which are known factors that affect relevance, uptake, and adherence in target populations. OBJECTIVE: In this study, we aimed to identify and document the current design and evaluation practices of mHealth technologies that promote early childhood health, with a specific focus on opportunities for those processes to address health disparities and health equity. METHODS: We completed a systematic literature review of studies that design and evaluate mHealth interventions for early childhood health promotion. We then analyzed these studies to identify opportunities to address racial disparities in early- and late-stage processes and to understand the potential efficacy of these interventions. RESULTS: Across the literature from medical, computing, and health informatics fields, we identified 15 articles that presented a design or evaluation of a parent-facing health intervention. We found that using mobile-based systems to deliver health interventions was generally well accepted by parents of children aged <5 years. We also found that, when measured, parenting knowledge of early childhood health topics and confidence to engage in health-promoting behaviors improved. Design and evaluation methods held internal consistency within disciplines (eg, experimental study designs were the most prevalent in medical literature, while computing researchers used user-centered design methods in computing fields). However, there is little consistency in design or evaluation methods across fields. CONCLUSIONS: To support more interventions with a comprehensive design and evaluation process, we recommend attention to design at the intervention (eg, reporting content sources) and system level; interdisciplinary collaboration in early childhood health intervention development can lead to large-scale deployment and success among populations. TRIAL REGISTRATION: PROSPERO CRD42022359797; https://tinyurl.com/586nx9a2.

Mobility with a lower limb prosthesis: experiences of users with high levels of functional ability.

PURPOSE: The Prosthetic Limb Users Survey of Mobility (PLUS-M) is a self-report item bank designed to measure the abilities with which people with lower limb amputation perform physical activities. Although PLUS-M includes items that span a range of mobility, additional items are needed to accurately measure mobility of highly active prosthesis users, such as athletes and service members with lower limb amputation. The aim of this study was to understand mobility in highly active lower limb prosthesis users to inform the development of new items for the PLUS-M item bank. METHODS: Focus groups were conducted with active, lower limb prosthesis users from across the USA. In-person and online focus groups were conducted by a trained facilitator using a semi-structured guide. Focus group transcripts were reviewed and coded by two researchers. Thematic analysis was used to identify important experiences across participants. RESULTS: Twenty-nine participants took part in four focus groups. Three resultant themes were identified: mobility after amputation, mobility characteristics, and healthcare providers and systems. CONCLUSIONS: Identified themes inform clinician and researcher understanding of mobility in highly active lower limb prosthesis users. The results of this study will be used to inform development of high-activity items for the PLUS-M item bank.Implications for rehabilitationParticipants described engagement in high-level activities as a learning process that included elements such as equipment challenges and modifications, pain and injury, and the need to trust the prosthetic limb.Participants with lower limb amputation who use prostheses identified mobility characteristics, such as postural changes, terrain, and obstacles, that influenced their ability to perform high-level activities.High-level mobility characteristics identified in these focus groups can be integrated into a revised version of the Prosthetic Limb Users Survey of Mobility to assess mobility in active adults and athletes with amputation.Rehabilitation professionals play an important role in facilitating access to specialized prosthetic components and training that can help patients achieve their mobility goals and potential.

A call to integrate health equity into learning health system research training.

In 2016, the Agency for Healthcare Research and Quality (AHRQ) recommended seven domains for training and mentoring researchers in learning health systems (LHS) science. Health equity was not included as a competency domain. This commentary from scholars in the Consortium for Applied Training to Advance the Learning health system with Scholars/Trainees (CATALyST) K12 program recommends that competency domains be extended to reflect growing demands for evidence on health inequities and interventions to alleviate them. We present real-life case studies from scholars in an LHS research training program that illustrate facilitators, challenges, and potential solutions at the program, funder, and research community-level to receiving training and mentorship in health equity-focused LHS science. We recommend actions in four areas for LHS research training programs: (a) integrate health equity throughout the current LHS domains; (b) develop training and mentoring in health equity; (c) establish program evaluation standards for consideration of health equity; and (d) bring forth relevant, extant expertise from the areas of health disparities research, community-based participatory research, and community-engaged health services research. We emphasize that LHS research must acknowledge and build on the substantial existing contributions, mainly by scholars of color, in the health equity field.

Psychometric evaluation of the Participation and Environment Measure for Children and Youth.

AIM: The aim of this study was to examine the psychometric properties (reliability and validity) of the Participation and Environment Measure for Children and Youth (PEM-CY). METHOD: The PEM-CY examines participation frequency, extent of involvement, and desire for change in sets of activities typical for the home, school, or community. Items in the 'Environment' section examine perceived supports and barriers to participation within each setting. Data were collected via an online survey from caregivers of children and young people, aged 5 to 17 years, with and without a range of different disabilities, residing in the USA and Canada. Caregivers were eligible for inclusion if (1) they identified themselves as a parent or legal guardian of the child who was the focus of the survey; (2) they were able to read English; and (3) their child was between 5 and 17 years old at the time of enrolment. RESULTS: Data were obtained from 576 respondents. About half were parents of children with disabilities and a little more than half were from Canada. Child mean age was 11 years (SD 3.1y); 54% were male and 46% were female. Internal consistency was moderate to good (0.59 and above) across the different scales. Test-retest reliability was moderate to good (0.58 and above) across a 1- to 4-week period. There were large and significant differences between the groups with and without disabilities on all participation and environment scales. Although there were some significant age differences, they did not follow a consistent pattern. INTERPRETATION: Results support the use of the PEM-CY for population-level studies to gain a better understanding of the participation of children and young people and the impact of environmental factors on their participation.

Transforming Well-Child Care to Meet the Needs of Families at the Intersection of Racism and Poverty.

Racism and poverty are intertwined throughout American society as a result of historic and current systemic oppression based on class and race. As the processes of pediatric preventive care, or well-child care, have evolved to better acknowledge and address health disparities due to racism and poverty, the structures of care have remained mostly stagnant. To cultivate long-term health and wellness of Black and Brown children, we must adopt an explicitly antiracist structure for well-child care. The pediatric medical home model is touted as the gold standard for addressing a host of health, developmental, and social needs for children and their families. However, the medical home model has not resulted in more equitable care for Black and Brown families living in poverty; there are ample data to demonstrate that these families often do not receive care that aligns with the principles of the medical home. This inequity may be most salient in the context of well-child care, as our preventive care services in pediatrics have the potential to impact population health. To appropriately address the vast array of preventive care needs of families living at the intersection of racism and poverty, a structural redesign of preventive care in the pediatric medical home is needed. In this paper, we propose a re-imagined framework for the structure of well-child care, with a focus on care for children in families living at the intersection of racism and poverty. This framework includes a team-based approach to care in which families build trusting primary care relationships with providers, as well as nonclinical members of a care team who have shared lived experiences with the community being served, and relies on primary care connections with community organizations that support the preventive health, social health, and emotional health needs of families of young children. Without a structural redesign of preventive care in the pediatric medical home, stand-alone revisions or expansions to processes of care cannot appropriately address the effects of racism and poverty on child preventive health outcomes.