IntroductionIn the United States, children are mandated to receive healthcare when they enter foster care and regularly thereafter; states may require more frequent visits. Despite regulations and public insurance to support access to healthcare for young people in foster care, health outcomes for this population remain poor. This study seeks to understand the extent to which caregiver/placement characteristics, child characteristics, and an information-sharing intervention are associated with receipt of mandated healthcare visits for youth in foster care, which may help the field to better understand why health disparities persist for youth in foster care.MethodsThis retrospective observational study uses administrative data from the child welfare system linked to the electronic health record at a freestanding children's hospital that is contracted to provide mandated healthcare visits for children entering foster care or experiencing placement changes. All children (0–21 years) in foster care for at least one day in a licensed, kinship, group home, or independent living placement in a single Ohio county between 2012 and 2025 (N = 24,904 placements for N = 10,729 youth) were included. Cross-classified multilevel logistic models predicted mandated visits within placements and accounted for the cross-classification of children within families of origin, placement providers, and the clustering of repeated observations within children.ResultsThe odds of completing a mandated visit was 73%. Placement providers accounted for the largest amount of variance in receipt of mandated care (44% in the adjusted model). Placement in settings other than licensed foster homes (i.e., kinship, group home, independent living) significantly reduced the likelihood of visits. While prior placement providers' experience was generally beneficial, it did not increase visit completion among those in kinship care. Across child characteristics (e.g., age in years, sex, race, ethnicity, number of unique medical diagnoses, number of unique mental health diagnoses), mental health diagnoses were significantly and meaningfully associated with completed visits. Finally, information sharing between healthcare and child welfare systems was associated with a greater likelihood of completing mandated visits (OR = 1.50).DiscussionThese results indicate that simply mandating visits is insufficient to ensure their completion. Caregiver factors, information sharing between healthcare and child welfare systems, and children's needs likely all represent mechanisms by which the healthcare and child welfare systems can increase mandated healthcare use.
Introduction:Child maltreatment has been linked to elevated pain symptoms and more chronic pain in adults. The hypothalamic-pituitary-adrenal (HPA) axis may be a mechanism connecting maltreatment to pain, where early life stressors are thought to impact HPA axis function, leading to increased inflammation and pain.Objectives:This study explored pathways associated with pain in young adult women with and without maltreatment exposure. Maltreatment was expected to be associated with increased exposure to interpersonal violence, inflammation, and negative affect which, in turn, would be associated with more pain in adulthood.Methods:Fifty women randomly selected from a prospective longitudinal cohort (n = 25 with confirmed child maltreatment, n = 25 demographically similar women without history of maltreatment) completed comprehensive assessments of risk factors for pain, including collecting inflammatory biomarkers.Results:Women who had experienced child maltreatment reported more exposure to interpersonal violence as young adults (chi 2 [1] = 6.52, P = 0.01). Small effect size differences were observed between women with maltreatment exposure and those without for inflammation in young adulthood (d = 0.29) and negative affect scores (d = 0.47), although not statistically significant. Small-to-moderate effect sizes differences were also observed between women exposed to interpersonal violence and those without interpersonal violence exposure for negative affect (d = 0.62) and inflammation (d = 0.46). Negative affect was significantly associated with experiencing any pain in young adulthood (odds ratio = 1.12, P = 0.03, 95% confidence interval = 1.01, 1.24).Conclusion:Mechanisms connecting maltreatment to pain are complex. Studies that account for the effect-moderating impact of early life stress on inflammatory pathways alongside psychological effects of stress exposures more proximal to pain (eg, interpersonal violence, mood) are needed.
OBJECTIVE:To examine feasibility, acceptability, satisfaction, and preliminary efficacy of Diabetes Journey (DJ), a randomized controlled clinical trial for 12- to 17-year-old adolescents with type 1 diabetes (T1D). STUDY DESIGN:Adolescents (n = 162; Mage = 14.8 ± 1.6 years; 56.4% female) who exceeded the clinical cut-point on the Barriers to Diabetes Adherence (BDA) questionnaire were randomized to DJ (amusement park-themed web modules) or enhanced standard of care (ESC; T1D education toolkit). Data were collected across 9 months, including baseline, posttreatment, follow-up 1 (3 months posttreatment), and follow-up 2 (6 months posttreatment). Primary outcomes were acceptability, feasibility, satisfaction, and BDA Stress/Burnout and Time Pressure/Planning scores at follow-up 1. Secondary outcomes were glycosylated hemoglobin A1c and quality of life. RESULTS:The group × time interaction was significant for the BDA Stress/Burnout subscale. Compared with ESC, the DJ group demonstrated a modest but statistically significant reduction in Stress/Burnout (b = -0.36, P < .05, 95% CI -0.72 to -0.01) and improvements in T1D quality of life (b = 7.09, P = .03, 95% CI 0.59-13.59). No significant differences occurred between groups for time pressure/planning. Adolescents and caregivers in DJ reported greater satisfaction than those in ESC. CONCLUSIONS:Our preliminary findings suggest that DJ had high acceptability, feasibility, and satisfaction. Adolescents randomized to DJ showed signals of reduced stress and burnout and improved quality of life at later follow-up, although these findings should be interpreted cautiously given attrition and the optional nature of the final follow-up assessment. TRIAL REGISTRATION:www. CLINICALTRIALS:gov NCT04404556.
Objective:Health care transition from pediatric to adult primary care is understudied, and factors associated with successful transfer to adult care are not well understood. Methods:The current study surveyed a sample of patients (N = 110) of transition age (18 - 22, M age = 19.42, SD age = 1.16) who attended a pediatric primary care practice. Mixed methods were used to assess the prevalence of successful transfer to adult primary care, factors associated with successful transfer, as well as barriers, facilitators, and recommendations for improving transition support. Results:45 % of the sample (n = 50) reported attending an adult primary care appointment. Contextual factors assessed (e.g., socio-economic status, disease complexity) and transition constructs (e.g., transition supports, transition behaviors, and transition attitudes) were not associated with transfer. No statistically significant predictors were identified. Exploratory patterns suggested that transition behaviors (e.g., managing medications, making appointments independently) may merit further investigation as a moderator. We report common barriers (e.g., logistics), facilitators (e.g., provider and family support), and recommendations (e.g., earlier transition support). Discussion:Our preliminary findings suggest that given the association between behaviors and transition readiness, pediatric primary care settings might benefit from using screening to prioritize which patients might benefit from enhanced transition support.
OBJECTIVE:Adolescents and young adults (AYAs) with epilepsy often require disease-specific care into adulthood. This study describes a sample of AYAs with epilepsy receiving adult neurologic care and examines transfer time and health care utilization for those who did and did not use our Epilepsy Transition Clinic (ETC). METHODS:Data for AYAs participating in an ETC were compared to peers not participating in the clinic. Between-group comparisons and regression analyses examined differences by clinic group and time point (i.e., pre- versus post-transfer to adult neurologic care) in health care utilization and time to transfer with age at transfer, sex, medical and psychiatric comorbidities, insurance, time since diagnosis, seizure frequency, and history of advanced treatments as covariates. RESULTS:This single-center retrospective review identified 89 adult patients, 40 of whom utilized a formal transition clinic. Significant group differences were identified in time to transfer (t = 2.64, p = 0.01), seizure frequency (χ2 = 9.46, p = 0.05), and presence of pediatric medically-refractory epilepsy (χ2 = 4.467, p = 0.04). Transfer time for those using the ETC was shorter than for those not using it (b = -0.39, p = 0.01). There was a significant difference obtaining vitamin D levels (OR = 10.42, p = 0.001), with those in the transition clinic more likely to have levels checked compared to those not in the clinic. CONCLUSION:ETCs may reduce transfer time, facilitate medical engagement between phases of neurologic care, and increase monitoring for epilepsy-specific comorbidities.
Background: At least 30% of youth with epilepsy will require transition from pediatric to adult neurology care. Many adolescents and young adults (AYAs) with epilepsy are inadequately prepared for health care transition, which may contribute to health care disruptions and decreased quality of life. The current study aimed to add to the growing body of literature on health care transition in epilepsy by characterizing a sample of AYAs with epilepsy and assessing the relationship between pre-existing and behaviorally modifiable factors and epilepsy- specific transition readiness. Methods: 103 AYAs ( M-age = 17.56; range = 14-21; 54% female; 85% White) with epilepsy and 84 of their caregivers were enrolled from two pediatric hospitals in the United States. Participants provided sociodemographic and medical information and completed questionnaires assessing functioning, epilepsy management, and transition readiness. Data were analyzed using a two-step hierarchical multiple linear regression model with epilepsy-specific transition readiness as the outcome: 1) pre-existing factors (i.e., age, insurance, seizure severity); and 2) behaviorally modifiable factors (i.e., cognitive functioning, medication self-management, epilepsy self-efficacy). Results: Only 44% of AYAs had discussed health care transition with their pediatric neurologist. The final model was significant, Delta F (3, 90) = 13.45, p < 0.001. Older age and greater epilepsy self-efficacy were associated with greater epilepsy-specific transition readiness. Conclusion: AYAs with greater epilepsy self-efficacy may be better prepared for the transition from pediatric to adult neurology care. Routine assessment of epilepsy self-efficacy and transition readiness starting in early adolescence may help to identify individuals who could benefit from targeted interventions.
Rates of depression among youth and emergency department (ED) visits for un- or under-treated symptoms are on the rise. Early identification and treatment of depression is imperative at the patient, program, system, and population levels. This paper examines the individual and cumulative impact of Project ECHO and the inclusion of IBH services in pediatric primary care practices on mental health-related ED rates among youth diagnosed with depression for those practices. Twenty-eight practices participated and provided data on 5,388 patients diagnosed with depression who were seen between 2019 and 2022. A binominal mixed effect model was used to examine the impact of Project ECHO and IBH on mental health-related ED rates among youth diagnosed with depression per month within each practice. Compared to practices without an IBH program, those who implemented IBH had a significantly lower rate of mental health-related ED visits among this patient population (Incident Rate Ratio (IRR) = 0.80, p = .005, 95
Background: Unprecedented rates of overweight and obesity are seen in childhood with evidence suggesting that infancy may be a critical period for the development of this elevated-weight trajectory. The impact of rapid growth in infancy on later obesity may differ by social stratification factors such as race/ethnicity and family income and be mediated by infant feeding and sleeping practices. This paper outlines the protocol for the Teaching Healthy Responsive Parenting during Infancy to promote Vital growth and rEgulation (THRIVE 2.0) intervention. Methods/design: This Phase 2b pilot randomized controlled trial will determine the feasibility, acceptability, satisfaction, and preliminary efficacy of the THRIVE 2.0 intervention compared with primary care treatment as usual (control). Caregiver-infant dyads will be recruited in pediatric primary care at their newborn visit and randomly assigned to THRIVE 2.0 (obesity prevention) or Control (usual pediatric care). Feasibility, acceptability, satisfaction, infant growth, feeding, and sleep will be assessed throughout the study period. Intervention will take place at regularly scheduled well-child visits at ages 1, 2, 4, and 6 months. Efficacy measures will be assessed at baseline, and 9 and 12 months of age. THRIVE is hypothesized to demonstrate efficacy for primary (e.g., conditional weight gain scores calculated from weight-for-length z-scores) and secondary outcomes (e.g., awareness of infant cues, use of alternative soothing strategies when it is not time for a feeding, and good infant sleep hygiene). Discussion: This paper outlines the planned procedures for the THRIVE 2.0 Phase 2b randomized controlled trial. Trial registration: Clinicaltrials.gov Identifier: NCT06028113 (October 10, 2023)
BACKGROUND:Adherence to cancer treatment protocol medications is critical for optimizing health outcomes, but up to 60% of adolescents and young adults (AYAs) with cancer miss doses. This randomized pilot trial evaluated the feasibility, usability, and acceptability of a tailored adherence-promotion intervention (Supporting Medication Management with Individualized Treatment, SUMMIT) for AYAs with cancer. METHODS:Seventy AYAs (ages 15-24 years) prescribed an oral chemotherapy or a prophylactic antimicrobial as part of their cancer treatment regimen enrolled in the trial. Of these, 24 met criteria for randomization and were assigned to the intervention (SUMMIT) or control (uniform standard of care) arm. Feasibility data were tracked prospectively. AYAs completed usability and acceptability measures and stored their medication in an electronic adherence monitoring device. Descriptive statistics were used to evaluate achievement of feasibility thresholds. An analysis of covariance (ANCOVA) and a logistic regression were used to explore group differences in electronically monitored adherence. RESULTS:Enrollment (70/77 = 91%), retention (56/65 = 86%), fidelity (100%), and assessment completion (100%) rates exceeded thresholds. The intervention was rated as usable and acceptable. Compared to those randomized to the control arm, AYAs randomized to SUMMIT had 18% higher post-intervention adherence (95% confidence interval [CI] = 3.56, 32.35) and were 12 times more likely to improve their adherence by 10% or more from pre- to post-intervention (odds ratio = 12.00, 95% CI = 1.51, 95.53). CONCLUSIONS:Feasibility, acceptability, and usability data are promising, and results suggest this tailored adherence-promotion intervention has the potential to increase medication adherence among AYAs with cancer. TRIAL REGISTRATION:ClinicalTrials.gov Registration: NCT05706610.
To assess what practice-, provider-, and patient population-level predictors predict adoption of an ADHD ehealth technology in community pediatric settings, pediatric providers nationwide were recruited and offered free use of an evidence-based mental-health-focused ehealth quality improvement intervention (mehealth for ADHD). Practice-, provider-, and patient population-level factors predicting provider's adoption of the intervention were studied. We hypothesized that providers who were younger, nearing re-credentialing, having more patients with ADHD, working at larger practices, serving socioeconomically deprived patient populations, and using an electronic health record (EHR) with mehealth integration would predict higher rates of adoption. A variety of recruitment strategies were attempted. Providers completed a baseline survey, were given free access to mehealth, and then had their software adoption recorded (i.e., account activation, rate of patients registered, completion of Plan-Do-Study-Act cycles). Multiple regressions examined what practice-, provider-, and patient population-level variables predicted provider's adoption of the software. A total of 1,612 providers at 813 practices across 48 states and the District of Columbia consented to the study. The most common ways that providers heard about the research study was through word-of-mouth (37%), advertising (23%), and through professional affiliation (11%). 1,210 (75.1%) providers activated their mehealth provider account and 446 (36.8%) registered at least 1 patient. Over 4.5 years, 21,804 patients were registered on the platform. Being able to access mehealth within their EHR predicted provider account activation, provider rate of patients registered, and the practice's completion of Plan-Do-Study-Act cycles. In addition, having a lower proportion of Medicaid patients predicted higher rates of patients being registered on the software. Getting providers to consider, try, and adopt new evidence-based assistive technologies is challenging. Making ehealth software easier for providers' to access through EHR integration appears critical to adoption.
Introduction:During COVID-19, anxiety and depression rates spiked across the US and continued to climb after August 2020. Research from the early months of COVID-19 suggests that resilience and meaning and purpose were associated with positive mental health outcomes in this context. Little is understood about how this association persists after 5+ months of ongoing disaster exposure, as was the case for COVID-19. The goal was to examine this relationship in adults in Southwest Ohio. Methods:Resilience, meaning-and-purpose, anxiety and depression symptom surveys were completed electronically between August 1 and November 30, 2020. Regression analyses examined relationships between these factors and sociodemographic variables. Results:Participants (N=98) reported anxiety and depression in mild ranges. Age was negatively associated with anxiety (p=.03). Meaning-and-purpose was negatively associated with both anxiety (p=.002) and depression (p<.001). Resilience was negatively associated with depression (p=.001). Further, reporting a mental health condition moderated the relationship between resilience and anxiety (p=.03), such that higher resilience was associated with higher anxiety in individuals reporting a mental health condition. Conclusions:Our study found associations between anxiety and depression symptoms and both meaning-and-purpose and resilience. The moderated relationship between resilience and anxiety symptoms supports the importance of assessing mental health status, particularly during public health emergencies. Regardless of mental health status, higher meaning-and-purpose was associated with lower anxiety and depression. Additional research is needed to better understand the role of meaning-and-purpose and resilience during future public health challenges.
OBJECTIVE:This three-arm pragmatic control trial tested the effectiveness of a single-dose evidence-based psychological intervention (EBPI) with and without a sleep kit (treatment arms) to usual care (control arm) among young people (ages 2-20 years) new to a foster care placement. METHODS:Caregivers and youth were screened for sleep concerns before their foster care clinic visit; if a concern was identified, enrolled young people and caregivers (N = 177) completed sleep assessments before the start of their clinic visit. On days when a psychologist was unavailable to address sleep concerns, participants were enrolled in the control arm. When a psychologist was present, clinic days were randomly assigned to condition (EBPI, EBPI + sleep kit). Participants and clinicians were masked to treatment arm during the clinician portion of their visit. Participants were unmasked at the end of their visit. At follow-up visits, surveys assessing sleep were re-administered. Chart reviews captured documented sleep concerns at clinic visits outside the foster care clinic in the 6 months following intervention. RESULTS:Compared to controls, those receiving EBPI reported less medicinal sleep aid use (e.g., melatonin) following intervention. Sleep concerns persisted in approximately half of enrolled youth and did not vary by study assignment; sleep outcomes were also similar. CONCLUSIONS:A single-dose EBPI to address sleep concerns may be effective for reducing use of medicinal sleep aids but is not effective for addressing sleep concerns more generally for young people in foster care.
To assess what practice-, provider-, and patient population-level predictors predict adoption of an ADHD ehealth technology in community pediatric settings, pediatric providers nationwide were recruited and offered free use of an evidence-based mental health-focused ehealth quality improvement intervention (mehealth for ADHD). Practice-, provider-, and patient population-level factors predicting provider's adoption of the intervention were studied. We hypothesized that providers who were younger, nearing recredentialing, having more patients with ADHD, working at larger practices, serving socioeconomically deprived patient populations, and using an electronic health record (EHR) with mehealth integration would predict higher rates of adoption. A variety of recruitment strategies were attempted. Providers completed a baseline survey, were given free access to mehealth, and then had their software adoption recorded (i.e., account activation, rate of patients registered, completion of Plan-Do-Study-Act cycles). Multiple regressions examined what practice-, provider-, and patient population-level variables predicted provider's adoption of the software. A total of 1,612 providers at 813 practices across 48 states and the District of Columbia consented to the study. The most common ways that providers heard about the research study was through word-of-mouth (37%), advertising (23%), and through professional affiliation (11%). A total of 1,210 (75.1%) providers activated their mehealth provider account and 446 (36.8%) registered at least 1 patient. Over 4.5 years, 21,804 patients were registered on the platform. Being able to access mehealth within their EHR predicted provider account activation, provider rate of patients registered, and the practice's completion of Plan-Do-Study-Act cycles. In addition, having a lower proportion of Medicaid patients predicted higher rates of patients being registered on the software. Getting providers to consider, try, and adopt new evidence-based assistive technologies is challenging. Making ehealth software easier for providers' to access through EHR integration appears critical to adoption.
BACKGROUND:Guidelines recommend that hydroxyurea be offered to children with sickle cell disease (SCD) as early as 9 months of age using shared decision-making. To help clinicians implement shared decision-making with parents, we developed the Hydroxyurea Shared Decision-Making (H-SDM) toolkit. We evaluated its effectiveness on parent decisional uncertainty, perceptions of shared decision-making, hydroxyurea knowledge, and the likelihood of being offered and prescribed hydroxyurea. PROCEDURE:Sites began in the usual care condition (clinician pocket guide) before crossing over to the H-SDM toolkit condition between 2018 and 2022. Caregivers of children with SCD (birth to 5 years) eligible for hydroxyurea completed assessments at baseline, immediately after discussing hydroxyurea with their clinician, and 3-7 months later. RESULTS:Participants included 176 caregivers (93.2% female, 89% Black); most toolkit participants were enrolled during the pandemic (n = 81). There were no statistically significant differences between conditions on parent decisional uncertainty, perceptions of shared decision-making, or hydroxyurea knowledge (p-values >0.05). However, there was a clinically important difference in certainty, with higher decisional uncertainty in the usual care group. A greater proportion of participants enrolled during usual care were offered (80.7%) and prescribed hydroxyurea (48.2%), compared to 58.7% offered and 39.7% prescribed during the toolkit condition (p-values ≤0.01). CONCLUSIONS:Findings suggest the toolkit may help parents feel more confident in deciding about hydroxyurea. Given the significant impacts of the COVID-19 pandemic on study implementation, the impact on hydroxyurea uptake requires additional exploration. Ultimately, the H-SDM toolkit may be most beneficial for clinics that do not routinely use a shared decision-making process for those considering hydroxyurea.
Objective:To engage end-users to develop and evaluate an algorithm to convert electronic adherence monitoring device (EAMD) output into the adherence data required for analyses. Materials and Methods:This study included 4 phases. First, process mapping interviews and focus groups were conducted to identify rules for EAMD data processing and user needs. Second, algorithm parameters required to compute daily adherence values were defined and coded in an R package (OncMAP). Third, algorithm-produced data were compared to manually recoded data to evaluate the algorithm's sensitivity, specificity, and accuracy. Finally, pilot testing was conducted to obtain feedback on the perceived value/benefit of the algorithm and features that should be considered during software development. Results:EAMD data processing rules were identified and coded in an R application. The algorithm correctly classified all complete observations with 100% sensitivity and specificity. The receiver operating characteristic curve analysis yielded an area under the curve of 1.00. All pilot testing participants expressed interest in using the algorithm (Net Promoter Score = 71%) but identified several features essential for inclusion in the software package to ensure widespread adoption. Discussion:The decision rules implemented to process EAMD actuation data can be parameterized to develop an algorithm to automate this process. The algorithm demonstrated high sensitivity, specificity, and accuracy. End-users were enthusiastic about the product and provided insights to inform the development of a software package including the algorithm. Conclusion:A rule-based algorithm can accurately process EAMD actuation data and has the potential to improve the rigor and pace of adherence science.
Most adolescents with type 1 diabetes (T1D) encounter barriers to achieving optimal glycemia, including effective planning and monitoring their T1D and problem-solving, and following through with T1D treatment decisions. Thus, the overall aim of Diabetes Journey, a randomized controlled clinical trial, was to assess the feasibility, acceptability, and preliminary efficacy of a novel, amusement park-themed, web-based mobile health (mHealth) intervention tailored for adolescents who experienced barriers to T1D self-management. Secondary aims included examining post-intervention changes in T1D health-related quality of life, T1D self-management behaviors, and hemoglobin A1c (HbA1c). This article describes the study rationale, recruitment, design, and baseline characteristics of the adolescents (aged 12-17 years) who were randomized to one of two groups: Diabetes Journey or Enhanced Standard of Care. Diabetes Journey focused on reducing challenges related to stress, burnout, time pressure, and planning through the delivery of 5-8 intervention sessions using a problem-solving framework. Enhanced Standard of Care participants attended 4 education sessions focused on similar topics through the T1D Toolkit© website (educational content and brief videos about T1D). Adolescents (N = 195) were recruited with n = 162 randomized (Mage = 14.8 ± 1.6 years; 50 % female, 88 % White; HbA1c% = 8.2 ± 1.8; 86 % on insulin pumps). Diabetes Journey was impacted by COVID-19 and modifications to the study design were warranted. Future directions include examining the impact of Diabetes Journey on primary and secondary outcomes, while accounting for the impact of COVID-19.
Randomized pretest, posttest, follow-up (RPPF) designs are widely used in longitudinal behavioral intervention research to evaluate the efficacy of treatments over time. These designs typically involve random assignment of participants to treatment and control conditions, with assessments conducted at baseline, immediately post-intervention, and during the follow-up period. Researchers primarily focus on determining whether the intervention is more effective than the control condition at post-treatment and whether these effects are sustained or change over time. This paper presents Latent Change Models (LCMs) as a practical approach for analyzing randomized pretest–posttest–follow-up (RPPF) trials, directly estimating discrete changes between timepoints and intervention–control group differences. The utility of LCMs is demonstrated through an application to the STAR (Supporting Treatment Adherence Regimens) trial, a pediatric randomized behavioral clinical trial aimed at improving adherence to anti-seizure medications (ASMs) among children with new-onset epilepsy. The results of the trial analyzed via an LCM are contrasted with the results as analyzed by an ANCOVA, a longitudinal linear mixed-effects model, and a latent growth curve model. The tutorial and application to the STAR trial demonstrate that LCMs offer notable strengths, including the ability to estimate discrete changes over time, control for baseline variability in the outcome, and incorporate all longitudinal data within a single, parsimonious model. These models provide an accurate and nuanced understanding of intervention effects in RPPF designs, with implications for clinical intervention research.