IntroductionYouth in foster care are at an increased risk of experiencing adverse childhood experiences, leading to higher rates of mental health challenges and substance use disorders compared to their peers. Cognitive Behavioral Intervention for Trauma in the Schools (CBITS) is an evidence-based trauma intervention typically delivered in school settings to address post-traumatic stress and depression. This study adapted CBITS using stages of the ADAPT-ITT framework to assess its feasibility and acceptability for youth in out-of-home care in a community-based group home setting.MethodsThe study used the first five phases of the ADAPT-ITT framework: assessment, decision, administration, production, and review by topical experts. Researchers interviewed stakeholders at both national and local levels to identify the needs of youth in the group home. A theater testing of CBITS was conducted with 17 youth, aged 10-18, using a non-probability sample. Participants completed pre- and post-intervention self-report surveys measuring trauma symptomology and problem-solving skills. Qualitative data were also collected through focus groups and interviews.ResultsOf the 17 youth who assented, 13 completed the intervention. Participants exhibited high rates of trauma at baseline. Qualitative analysis revealed how youth found CBITS to be beneficial and what encouraged and discharged engagement. Qualitative themes reflected participants' perceptions of CBITS as helpful for managing stress, building coping skills, and reframing challenges, alongside barriers to attendance such as competing activities.ConclusionThe adapted CBITS programming showed preliminary success in being feasible and appropriate for youth residing in out-of-home care. Future adaptations, including increased individual sessions, may further enhance the intervention's effectiveness for this population. The early findings suggest feasibility for broader implementation.
Abstract BackgroundPatients frequently access laboratory results through patient portals, but many struggle to interpret these values and formulate relevant questions for their clinicians. Question prompt lists (QPLs) can enhance communication but are rarely tailored to individual clinical contexts. ObjectiveThis study evaluated the feasibility of using large language models (LLMs) to generate patient-friendly, clinically relevant questions grounded in electronic health record (EHR) laboratory data. MethodsWe extracted deidentified clinical profiles, including laboratory results, diagnoses, and medications, from patients with chronic conditions (eg, diabetes and chronic kidney disease). Using 9 deidentified clinical profiles from the OneFlorida Data Trust, we generated 486 questions across all rounds: 126 with GPT-4o in round 1, 120 with GPT-4o in round 2, 180 with GPT-4o in round 3, and 60 with LLaMA 3.2 in round 3. Prompt refinements were informed by clinician ratings consisting of 2 binary questions (ie, clear phrasing and clinical validity) and 3 Likert-scale questions (ie, significance for the patient’s health; clinical appropriateness, that is, the likelihood of being asked in primary care setting; and willingness to answer). Refinements were incorporated after each round. Patient participants then evaluated selected questions for understandability, perceived usefulness, and intention to use. Readability was assessed with standard indices. ResultsIterative clinician feedback improved question clarity and reduced clinically irrelevant suggestions. Across rounds, GPT-4o consistently produced more coherent and patient-friendly questions, while LLaMA 3.2 demonstrated competitive performance on Likert-scale metrics. It exhibited greater variability in clinical appropriateness as noted by clinicians. In round 3, the binary metric “clear phrasing” reached a ceiling effect for both models, while clinical validity ratings showed greater variability, particularly from one clinician. Likert-scale evaluations tended to favor LLaMA 3.2 across all 3 clinicians for clinical appropriateness (3.37‐4.82 vs 3.02‐4.67), significance for the patient’s health (3.38‐4.28 vs 2.97‐3.83), and willingness to answer (3.17‐4.70 vs 2.82‐4.47), with multiple comparisons reaching statistical significance after Bonferroni correction. Patient evaluation (N=134) of GPT-4o–generated questions showed that 25 of 30 questions had moderate to high understandability (average Likert score ≥3.5), and 19 of 30 questions had moderate to high usefulness (average Likert score ≥3.5). ConclusionsThis study supports the feasibility of using LLMs with structured EHR-derived laboratory data to generate contextualized QPLs, but model outputs varied in clinical appropriateness and readability. Clinician-in-the-loop review remains necessary before patient-facing use.
Permanency in foster care is crucial for children's well-being, fostering stable connections, and minimizing trauma. Understanding the factors influencing permanency outcomes remains limited. Utilizing data from Florida's Department of Children and Families, this study employed a multivariate approach to explain predictors of permanency. The sample includes 35,880 children who entered foster care in Florida between October 1, 2017, and September 30, 2021. Findings reveal older youth entering care are less likely to be adopted and more inclined toward guardianship. Children removed due to maltreatment face lower adoption or guardianship rates, rather than reunification. Placement in nonrelative foster families or a group home increases the chances of adoption or guardianship. Practice recommendations include tailored support for older youth and enhanced reunification services.
Background:Emerging evidence supports that women with histories of abuse have heightened stress and immune dysregulation. Few studies have examined the biological plausibility of this association in US Black women-a population disproportionately affected by gender-based violence (GBV), health disparities, and generally underrepresented in research. Biomarkers of stress and immune health remain challenging to study due to barriers in recruitment, retention, and protocol adherence. Objective:This study developed and examined the feasibility of an at-home, self-collected, and minimally invasive salivary cortisol awakening response (CAR) collection protocol among Black women with histories of abuse in Baltimore City, Maryland. Methods:Black women were recruited from November 2015 to May 2018 from Baltimore City sexually transmitted disease clinics. Participants received in-person instruction and demonstration on saliva self-collection using the passive drool method, and were provided study-issued cell phones for reminders and adherence tracking. Participants self-collected saliva samples upon waking and 30 minutes post waking on 3 consecutive days to assess CAR. Outcomes included protocol completion, self-reported adherence, and experiences (via saliva collection logs), a weighted protocol adherence score, and cortisol measures (waking, post waking, and CAR). Differences in sociodemographic characteristics and outcome measures were assessed by adult forced sex exposure status using chi-square tests and ANOVA. The Pearson correlation coefficient assessed the day-to-day reproducibility of cortisol measures among women with 2 full days of valid samples. Results:Of the 305 women completing the study survey, 228 completed the saliva specimen collection protocol, with no significant differences in completion between women with and without forced sex histories. Protocol feasibility was high, with 84% (191/228) completing at least 1 full day of adherent saliva collection and more than half (132/228) completing 2 full days. While feasibility did not differ by exposure status, women with adult forced sex exposure demonstrated lower protocol adherence scores compared to their unexposed counterparts. Between-day cortisol measures demonstrated variable reproducibility across waking, post waking, and CAR measures. Conclusions:This at-home salivary cortisol collection protocol was feasible in our robust sample of Black women with histories of abuse. The process of at-home collection of salivary biomarkers, including cortisol measures, was well-documented, and participants were able to adhere to it. The protocol yielded usable data that will facilitate the examination of the physiological and health repercussions of GBV.
Purpose: Chronic diseases contribute toward increased rates of disability, morbidity, and mortality around the world. People living in rural areas are disproportionately more likely to have chronic diseases and greater chronic disease risk from modifiable lifestyle risk factors. The purpose of this study was to explore the perspectives of rural participants of an online lifestyle medicine intervention study regarding online health program delivery format, digital data collection, and making health behavior modifications. Design: The study had a descriptive qualitative design using individual semi-structured interviews via Zoom to collect information from a subset of intervention group participants. The interviews (n = 26) were transcribed within the Zoom application and checked for accuracy. Grounded theory guided the thematic analysis of qualitative data using an iterative process to discover patterns, concepts, and central themes. Results: Four categorical themes emerged: Online and Digital Format , Health Behavior Outcomes, Health Behavior Change Barriers, and Health Behavior Change Facilitators . The findings highlighted rural perspectives about participating in online and digital intervention study modalities and making health behavior changes, including barriers and facilitators. Conclusion: The results emphasize that people living in rural areas can actively participate in online interventions, digitally complete study activities, and make healthier lifestyle choices.
Pre-transplant psychosocial assessment, in conjunction with medical and surgical evaluation, is a critical component of determining pediatric heart transplant candidacy. Psychosocial factors such as family dynamics, health literacy, mental health, financial stability, and adherence potential are often multidimensional and interdependent, making their assessment both vital and complex. However, few standardized tools exist to guide these evaluations in pediatric heart transplant settings, and even fewer have demonstrated empirical validity or predictive value. To address this gap, the Pediatric Psychosocial Assessment Tool (PPAT) was developed to provide a structured, semi-quantitative framework for evaluating psychosocial risk in pediatric transplant candidates. This study presents initial validation data for the PPAT, based on 189 assessments conducted at a large pediatric heart transplant center. The tool evaluates nine psychosocial domains, assigns risk ratings, and yields a total risk score. Confirmatory factor analysis supported the unidimensional structure of the tool, and internal consistency was strong (α = 0.89). Higher PPAT scores were significantly associated with lower odds of being listed for transplant by the center's multidisciplinary medical review board (MRB), even after accounting for clinical factors. Domain-level findings revealed financial and health literacy issues as commonly identified risk areas. The PPAT holds promise as a valid, reliable, and clinically useful instrument for guiding MRB discussions and targeting interventions to support high-risk families. Future directions include expanding implementation to other centers and integrating the PPAT into digital platforms using artificial intelligence and natural language processing to enhance efficiency, consistency, and patient-centered care.
Introduction Anxiety symptoms influence health outcomes in pediatric organ transplant recipients. Assessing the quality of anxiety scales is critical to address the psychological challenges these patients face. Variability in how anxiety is conceptualized across scales highlights the need for selecting appropriate instruments. Objective This systematic review aimed to search and synthesize anxiety scales used in pediatric organ transplant studies, evaluate their reliability and validity, examine factors and group differences related to anxiety, and identify promising scales for this population. Methods A systematic search was conducted using the terms “(Anxiety) AND (organ transplant) AND (child* OR youth OR pediatric* OR adolescen*).” Ten electronic databases were accessed. Results Eighteen anxiety scales from 30 articles were identified. Fourteen scales measured specific anxiety types. Most scales demonstrated good to excellent reliability and validity. Associations between anxiety and demographics, psychological well-being, factors related to illness and treatment were observed. Five types of anxiety-related differences among groups and 6 promising anxiety scales for the target population were identified. Discussion General and specialized anxiety scales were identified. Incomplete reporting of psychometric evidence restricted the quality assessment. Limitations include cultural and publication biases. Future research should focus on transplant-specific scales with psychometric validation across culturally diverse settings to ensure their quality and applicability. Conclusion This review identified well-validated scales, such as State-Trait Anxiety Inventory for Children and Generalized Anxiety Disorder-7, effective for quick screening. Specialized instruments were used for nuanced anxiety concepts such as needle-related anxiety, illness-specific anxiety, and anxiety during the transition to adult care, but further psychometric validation is needed.
Objective:Pediatric heart transplantation is challenged by limited donor organ availability, prolonged waitlist times, and elevated risks of late acute rejection (LAR) and hospitalization. Current predictive models for post-transplant outcomes lack high accuracy due to reliance on registry data without integrating dynamic clinical and social factors. This study aimed to improve predictive performance and model interpretability by incorporating electronic health records (EHR), social determinants of health (SDoH), and United Network for Organ Sharing (UNOS) data. Materials and Methods:We used EHR and UNOS data from 111 pediatric heart transplant patients (ages 0-18) at the University of Florida Health Shands Children's Hospital to build predictive models for organ rejection at 1-, 3-, and 5-year intervals post-transplant. UNOS data includes pre- and post-transplant health and medical records, encompassing procedures, clinical evaluations, and post-transplant follow-up information, EHR data included evolving clinical parameters (e.g., comorbidities, medication adherence, and laboratory results), while SDoH encompassed socioeconomic status, living conditions, and healthcare access. Feature importance was assessed using Shapley Variable Importance Cloud (ShapleyVIC), which integrates Shapley Additive Explanations (SHAP) to provide robust, interpretable insights across nearly optimal models. Results:Models integrating EHR, SDoH, and UNOS data outperformed those using UNOS data alone, with AUROC of 0.743 (0.607-0.879), 0.798 (0.725-0.871), and 0.760 (0.692-0.828). Key predictors of rejection included severe pre-transplant conditions (e.g., life support, prolonged waitlist times), elevated bilirubin and creatinine levels, and social factors (e.g., transportation barriers, BMI, insurance type). Discussion:Findings reveal the importance of integrating clinical and social data to address multisystem dysfunction, disparities in healthcare access, and adherence challenges. ShapleyVIC enhanced model interpretability, providing actionable insights for improving post-transplant care. Conclusion:Holistic, data-driven approaches that combine EHR, SDoH, and registry data significantly enhance predictive accuracy and interpretability, supporting improved long-term outcomes for pediatric heart transplant patients.
To explore patients' use of patient portals to access lab test results, their comprehension of lab test data, and factors associated with these. An online survey was administered to 276 adults 18+ years. Multivariate logistic regression was used to determine factors associated with patient portal use to view lab test results and lab test comprehension. The sample was predominantly White (72.5%), female (55.4%), with mean age 50.7 ± 15.5 years. Overall, participants had low numeracy (10.79 ± 2.71) and eHealth literacy skills (23.91 ± 5.29), and moderate lab test comprehension scores (18 ± 2.3). White participants with greater eHealth literacy were more likely to access lab test results via patient portals, whereas those with a college education were less likely to do so (χ2 [3]=31.23, P < .001). The regression showed that older age, fewer chronic conditions, and use of patient portals were significantly related to higher lab test comprehension scores (F [22, 250]=8.73, P <.001). Older adults performed better on comprehension tests but reported having difficulty understanding lab tests, expressing a preference for their doctors to explain them. The findings shed light on the experiences and needs of different user groups that must be addressed to enhance their ability to effectively use patient portals for obtaining lab test results. More research is needed to determine patient barriers to comprehending lab test results online and to develop tailored strategies to improve patients' self-efficacy to meaningfully use medical information in patient portals.
Purpose Chronic diseases contribute to high death and disability rates around the globe. Rural areas of the southern United States have limited resources and disproportionately worse health outcomes, and increased prevalence of modifiable disease risk factors. The purpose of this study was to evaluate the effects of an online lifestyle medicine program on the dietary and social support health behavior determinants of rural adults. Design A randomized controlled trial was conducted to test the lifestyle medicine intervention among rural participants (n = 80) randomized to either an intervention (n = 40) or waitlisted control (n = 40) group. Participants in the intervention group received a lifestyle medicine program via an online group-based format. Results Data were analyzed using mixed-effects models for repeated-measures (MMRM) to evaluate intervention effects over time. The analysis showed significant intervention effects for primary outcomes regarding dietary produce health behavior determinants and secondary social support outcomes. The intervention, or experience over time, may have shifted certain behaviors and knowledge domains. Conclusion Participants of the web-based lifestyle medicine intervention had positive improvements in dietary and social support determinants of health behaviors. The results can facilitate future intervention development and implementation among rural populations.
BACKGROUND:Medication adherence and timing of doses remains a challenge for adolescent patients following heart transplant. Mobile technology and adherence promotion efforts offer new avenues for direct observation of medication adherence and timeliness of medication-taking behavior. The study explores posttransplant medication maintenance, highlighting the importance of consistent dose timing with tacrolimus. The use of directly observed therapy (DOT) via a mobile health app was examined as a method for real-time medication monitoring, offered a platform for patients to upload videos of themselves taking medication for review by transplant team members. METHODS:The study examined a single-group design involving 10 adolescent heart transplant recipients over a 12-week DOT intervention, assessing both medication adherence and post-intervention outcomes. RESULTS:Results from multilevel regression models analyzing inter-dose timing and deviation from 12-h intervals revealed significant variability among patients and a correlation between increased deviation from the 12-h dose interval and both older patients and those with greater perceived barriers to medication adherence. CONCLUSIONS:Findings suggested a link between deviation from recommended dose timing and poorer posttransplant health outcomes. Findings underscored the potential of DOT and mobile health to examine timeliness of medication adherence, to directly observe medication-taking behavior, and association with posttransplant health outcomes.
Elevated arterial stiffness is associated with an increased risk of comorbidities such as stroke, heart attack, and kidney disease. Pediatric heart transplant patients are known to have arterial hypertension and elevated aortic stiffness. Limited data on pulse wave velocity (PWV), a surrogate for arterial stiffness, is available in pediatric patients. We performed an observational, prospective study assessing arterial stiffness, utilizing PWV, in pediatric heart transplant recipients. Hemodynamic tracings were obtained via pigtail catheter pullback from ascending to descending aorta during surveillance cardiac catheterization. We found that PWV was abnormal ≥4m/s in patients early and late post-heart transplantation. Cholesterol levels were negatively correlated with PWV. A serial longitudinal assessment of PWV is required to further correlate abnormal PWV with clinical complications.
Background Retention of study participants in observational studies is essential to maintaining the representativeness of the population, minimizing selection bias, and assuring sufficient statistical power. The aim of this report is to describe the structures and strategies used to retain participants in The Environmental Determinants of Diabetes in the Young (TEDDY) Study, an observational study of children at increased genetic risk for type 1 diabetes followed in an intensive protocol from birth until age 15. Methods Teague et al’s systematic review of study retention strategies identified four domains: barrier reduction; community building; follow-up/reminder; and tracing strategies (1). TEDDY retention strategies were categorized into each of these domains. A fifth category presented strategies unique to TEDDY. Results TEDDY employed over one hundred retention strategies during the 15 years of follow-up; many could be categorized within the Teague domains. Strategies unique to TEDDY included (1) study structures to support retention; (2) risk communication and education strategies specific to this population; (3) Data-informed retention strategies that addressed protocol challenges in real-time; and (4) implementation of a re-engagement protocol for those who had withdrawn from the study. Conclusion Pediatric cohort studies should include strategies, structures, and resources to address retention at the study's initiation and on an ongoing basis. Retention strategies should not remain static but change with the developmental needs of the child. Collecting and analyzing data on an ongoing basis permits retention strategies to be put in place to address protocol and retention challenges in real time. Trial registration ClinicalTrials.gov Identifier: NCT00279318
Purpose Effectively engaging parents under stress is a key component of skilful child welfare practice. This paper aims to investigate how social workers practice with parents with either high or normal levels of stress. Design/methodology/approach The study used a mixed methods design including observations and audio recordings of meetings between families and social workers, interviews with parents/carers and questionnaires with social workers. Validated instruments, including the general health questionnaire (GHQ) for stress levels and the working alliance inventory (WAI), were used to explore how levels of stress influence practice. Findings Data from 366 families found twice as many parents had clinically elevated GHQ scores compared to the general population (40% to about 20%). Stressed parents reported significantly less good working relationships with social workers [WAI, for the less stressed parents/carers, M = 65.3 vs highly stressed M = 60.6, t (324) = 2.407, p = 0.017, d = 0.28]. When quality of practice was directly measured, workers showed higher level of relationship skills with the less stressed group [t(291) = 1.71, p = 0.44, d = 0.205]. Originality/value This study explored the interaction between practitioner skills and family factors influencing engagement, such as stress and anxiety. Engagement with stressed families may be particularly challenging, making it all the more important to understand how social workers engage such families to provide effective help and support. A better understanding of the parent-worker relationship under stress can lead to the development of training and practice strategies aimed at overcoming barriers in family engagement. This study also highlights the need for practice to re-focus on the relational elements and the emotional well-being of families.
This study explored the relationship between in-app messaging and patient time between doses of medication during mHealth video directly observed therapy (vDOT) intervention. The vDOT intervention sought to improve medication adherence among adolescent heart transplant recipients. The study utilized a 12-week vDOT pilot with ten adolescent patients, focusing on tacrolimus, a critical immunosuppressant medication. vDO $T$ aimed to enhance patient engagement, provide interpersonal support, and ensure medication-taking consistency (inter-dose timeliness and intervals between doses). Results demonstrated the relationship between in-app communication and more consistent medication-taking behaviors, revealing that messages containing praise, rapport-building, and medically relevant information were positively associated with patients taking medication every 12 hours. The findings suggest that integrating direct observation and personal engagement via mHealth apps could be a promising strategy for managing medication adherence in pediatric transplant care.
Purpose: This study sought to validate the psychometric properties of the Network Composition Survey (NCS), a multi-dimensional conceptualization of social support for individuals who are incarcerated. Methods: Data included 1,539 individuals recruited in 50 prisons across four states to participate in the pilot trial of a prison reentry program. Exploratory factor analysis using the first support person data identified a factor structure, and confirmatory factor analysis verified that structure using the second and third support person data conducted with Mplus 8.2. Results: Two of the hypothesized dimensions, informational and emotional support, were confirmed, and a third factor of companionship was identified. Conclusion: The reduced NCS is a reliable and valid measure of multi-dimensional social support for individuals during incarceration. The NCS reflects a more nuanced assessment of the complexities of interpersonal dynamics with support figures. The NCS also provides utility services targeted for social support during reentry.
IntroductionLimited research has explored immunosuppressant medication adherence over time in pediatric transplant patients, who often struggle with posttransplant regimen adherence, resulting in poor outcomes.MethodsThis study investigated the longitudinal growth in immunosuppressive medication levels following transplantation. Medication level variability index (MLVI) scores from tacrolimus blood levels of pediatric organ transplant recipients at a major medical center were analyzed. Linear mixed effect models (LMEM) assessed individual MLVI change trajectories and predictors of growth, exploring both linear and curvilinear growth patterns posttransplant.ResultsA sample of 181 patients with at least 4 years of MLVI data were analyzed. Growth curve modeling identified the cubic model as the best fit for the quarterly MLVI values, which significantly decreased within the first 2 years posttransplant before stabilizing. Gender significantly predicted MLVI change, with females showing greater MLVI decreases, while age at transplant did not significantly predict changes. Significant variation in MLVI among individual patients was found in all models.ConclusionsThe study demonstrated a significant decrease in MLVI values over time, indicating improved medication adherence in pediatric transplant patients, with females exhibiting more adherent growth patterns than males. Future research should aim to identify pediatric patients at high risk of nonadherence.
Purpose: Elevated arterial stiffness is associated with increased morbidity and mortality in adults with sparse pediatric data. We have previously demonstrated using non-invasive imaging that pediatric heart transplant patients have elevated ascending aortic arterial stiffness. We sought to evaluate pulse wave velocity (PWV) as a surrogate marker for arterial stiffness in pediatric heart transplant patients.
Medication non-adherence remains a significant challenge for adolescent heart transplant recipients. Building on the success of a pilot intervention study, herein we describe the protocol for a follow-up randomised control trial using mobile video directly observed therapy, featuring several innovations, to promote medication adherence in a multi-centre sample of adolescent heart transplant patients.
Traumatic events are becoming more prevalent in youth, especially considering the increase in disaster exposure, impacting the wellbeing and mental health of youth. Youth in rural communities are more adversely impacted due to a lack of access to available support and services. Interventions geared toward treating traumatic stress are needed for youth residing in these communities. The Cognitive-behavioral Intervention in Schools is a school-based trauma-focused group therapy intervention geared for adolescents between 5 to 12th grade who have experienced traumatic events. The aim of this study was to test the feasibility, acceptability, and preliminary effectiveness of CBITS in a rural community impacted by a natural disaster.This study utilized a non-probability sample of youth attending primary and secondary school in a rural community impacted by Hurricane Michael. Data collection occurred with youth and parents at three-time points: pre-, post- and three months post-intervention. Feasibility and acceptability were measured through count data of referrals, assents/consents, and the number of sessions attended. Outcomes explored improvement in trauma symptomology and problem-solving skills. Results showed CBITS is a feasible and acceptable intervention for youth exposed to a natural disaster. Results of the outcome measures showed significant differences between baseline and three-month follow-up and from the post-test to the three-month follow-up on the youth self-report. Parent proxy report showed a significant decrease in PTSD symptomology from the post-test to the three-month follow-up. To examine predictors of improvement at follow-up, a regression analysis was conducted. Results showed that trauma exposure and gender were significant predictors for trauma symptom follow-up scores on the youth self-report. Youth trauma experiences vary, but for youth impacted by natural disasters, CBITS may be a feasible and acceptable intervention. School-based interventions are integral for serving youth who may not receive trauma intervention otherwise, especially for those in rural communities.
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