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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

A Parent Coach-Led Model of Well-Child Care for Young Children in Low-Income Communities: Protocol for a Cluster Randomized Controlled Trial.

BACKGROUND: The Parent-focused Redesign for Encounters, Newborns to Toddlers (PARENT) intervention was created as a team-based approach to well-child care (WCC) that relies on a health educator (Parent Coach) to provide the bulk of WCC services, address specific needs faced by families in low-income communities, and decrease reliance on the clinician as the primary provider of WCC services. OBJECTIVE: This study aims to evaluate the impact of PARENT using a cluster randomized controlled trial. METHODS: This study tested the effectiveness of PARENT at 10 clinical sites in 2 federally qualified health centers in Tacoma, Washington, and Los Angeles, California. We conducted a cluster randomized controlled trial that included 916 families with children aged ≤12 months at the time of the baseline survey. Parents will be followed up at 6 and 12 months after enrollment. The Parent Coach, the main element of PARENT, provides anticipatory guidance, psychosocial screening and referral, developmental and behavioral surveillance, screening, and guidance at each WCC visit. The coach is supported by parent-focused previsit screening and visit prioritization, a brief, problem-focused clinician encounter for a physical examination and any concerns that require a clinician's attention, and an automated text message parent reminder and education service for periodic, age-specific messages to reinforce key health-related information recommended by Bright Futures national guidelines. We will examine parent-reported quality of care (receipt of nationally recommended WCC services, family-centeredness of care, and parental experiences of care), and health care use (WCC, urgent care, emergency department, and hospitalizations), conduct a cost analysis, and conduct a separate time-motion study of clinician time allocation to assess efficiency. We will also collect data on exploratory measures of parent-and parenting-focused outcomes. Our primary outcomes were receipt of anticipatory guidance and emergency department use. RESULTS: Participant recruitment began in March 2019. After recruitment, 6- and 12-month follow-up surveys will be completed. As of August 30, 2021, we enrolled a total of 916 participants. CONCLUSIONS: This large pragmatic trial of PARENT in partnership with federally qualified health centers will assess its utility as an evidence-based and financially sustainable model for the delivery of preventive care services to children in low-income communities. TRIAL REGISTRATION: ClinicalTrials.gov: NCT03797898; https://clinicaltrials.gov/ct2/show/NCT03797898. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/27054.

The Concerns About Pain (CAP) Scale: A Patient-Reported Outcome Measure of Pain Catastrophizing.

Pain catastrophizing has been recognized as an important and consistent psychosocial predictor of nearly every key pain-related outcome. The purpose of this study was to develop a new measure of pain catastrophizing using modern psychometric methodology. People with chronic pain (N = 795) responded to thirty items. Data were analyzed using item response theory, including assessment of differential item functioning and reliability. Sensitivity to change and validity were examined using data collected from patients undergoing spinal fusion surgery (n = 184) and participating in an ongoing longitudinal aging with a disability survey study (n = 1,388). The final 24-item bank had no items with significant local dependence, misfit, or differential item functioning. Results provided strong evidence of reliability and validity. Six- and 2-item short forms were developed for use when computer adaptive testing is not feasible or desirable. The item bank was named the University of Washington Concerns About Pain scale because the term "catastrophizing" was considered stigmatizing by people with chronic pain. Guidance for score interpretation was developed with extensive feedback from individuals with chronic pain. The Concerns About Pain item bank, short forms, and user manuals are free and publicly available to all users and can be accessed online at https://uwcorr.washington.edu/measures/. PERSPECTIVE: This article presents the development of the University of Washington Concerns About Pain scale, the first item response theory-based item bank of pain catastrophizing. The measure is intended for clinicians interested in improving outcomes of patients with chronic pain and for researchers who study impact of and treatment interventions aimed at reducing pain catastrophizing.

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.

Utilization of Physical Therapy Services During Transition for Young People With Cerebral Palsy: A Call for Improved Care Into Adulthood.

Background: Many young adults with cerebral palsy (CP) face limited participation in activities, including employment and independent living. Physical therapy during the transition period can help to support participation through promotion of self-care, ambulation, and functional mobility. Thus, ensuring appropriate access to physical therapy services for young people who can benefit from them before, during, and after transition is imperative. Objective: The objective of this study was to identify factors contributing to the utilization of physical therapy services for youth with CP both during and after secondary school. Design: The design was a deidentified secondary analysis of the National Longitudinal Transition Study 2 (NLTS2). Methods: Multivariate regression models were run to examine demographic and disability characteristics influencing utilization of physical therapy services for youth with CP both during and after secondary school. Results: The total weighted population sample included 35,290 young people with CP. When all youth were in secondary school, 59.4% of the youth utilized physical therapy services; however, once all youth were out of school, only 33.7% of them were reported to have utilized physical therapy since leaving secondary school. For young people with difficulties accessing general disability support services, demographic characteristics, including sex, race, income, and parent education status, influenced use of physical therapy services in addition to disability characteristics. Limitations: This population sample included only young people in special education with Individual Education Plans (IEPs) and may not generalize to young people with CP in general education settings. Conclusions: Frequency of physical therapy services decreases drastically once young adults with CP leave secondary school. Future work should examine this trend in more depth to identify therapy intervention strategies to optimize participation in young adult life for persons with CP.

Measuring Pain Catastrophizing and Pain-Related Self-Efficacy: Expert Panels, Focus Groups, and Cognitive Interviews.

PURPOSE: Pain-related self-efficacy and pain catastrophizing are important psychosocial determinants of pain and can be therapeutic targets for chronic pain management. Advances in psychometric science have made shorter or dynamically administered instruments possible. The aim of this study was to generate and test candidate items for two new patient-reported outcome measures of pain-related self-efficacy and pain catastrophizing. METHODS: An expert panel of pain clinicians and researchers was convened to establish construct definitions of pain-related self-efficacy and pain catastrophizing and guide item development. Two patient advisors provided guidance throughout the project. Nineteen people with chronic pain participated in focus groups about their perspectives and experiences related to pain-related self-efficacy and pain catastrophizing. Twenty-two people with chronic pain participated in cognitive interviews to test proposed candidate items. RESULTS: Saturation was reached after three focus groups with no new subdomains identified by participants in the third focus group. Following cognitive interviews, five of the 48 initial pain-related self-efficacy candidate items were dropped and seven required substantial revision resulting in 43 pain-related self-efficacy candidate items. After two rounds of cognitive interviews, ten items were eliminated and ten substantially revised, resulting in a set of 30 from the initial 43 pain catastrophizing candidate items. CONCLUSION: This article summarizes results of the qualitative phase of the development of new measures of pain-related self-efficacy and pain catastrophizing. Candidate items will be field tested with a large sample of people with chronic pain and the data will be used to calibrate items to an item response theory model. Resulting item banks and short forms will be made publicly available to researchers and clinicians.

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.