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OBJECTIVE: To understand whether and how primary care providers and staff elicit patients' past experiences of healthcare discrimination when providing care. DATA SOURCES/STUDY SETTING: Twenty qualitative semi-structured interviews were conducted with healthcare staff in primary care roles to inform future interventions to integrate data about past experiences of healthcare discrimination into clinical care. STUDY DESIGN: Qualitative study. DATA COLLECTION/EXTRACTION METHODS: Data were collected via semi-structured qualitative interviews between December 2018 and January 2019, with health care staff in primary care roles at a hospital-based clinic within an urban safety-net health system that serves a patient population with significant racial, ethnic, and linguistic diversity. PRINCIPAL FINDINGS: Providers did not routinely, or in a structured way, elicit information about past experiences of healthcare discrimination. Some providers believed that information about healthcare discrimination experiences could allow them to be more aware of and responsive to their patients' needs and to establish more trusting relationships. Others did not deem it appropriate or useful to elicit such information and were concerned about challenges in collecting and effectively using such data. CONCLUSIONS: While providers see value in eliciting past experiences of discrimination, directly and systematically discussing such experiences with patients during a primary care encounter is challenging for them. Collecting this information in primary care settings will likely require implementation of multilevel systematic data collection strategies. Findings presented here can help identify clinic-level opportunities to do so.

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INTRODUCTION: Some caregivers are hesitant about topical fluoride for their children despite evidence that fluoride prevents caries and is safe. Recent work described a five domain model of caregivers' topical fluoride hesitancy. We developed the Fluoride Hesitancy Identification Tool (FHIT) item pool based on the model. This study sought to evaluate the FHIT's psychometric properties in an effort to generate a short, simple to score, reliable, and valid tool that measures caregivers' topical fluoride hesitancy. METHODS: In 2021 and 2022, we conducted an observational, cross-sectional study of caregivers, collecting data from two independent caregiver samples (n1 = 523; n2 = 612). The FHIT item pool included 33 items. We used confirmatory factor analyses (CFA) to examine whether the FHIT items measured five separate domains as hypothesized and to reduce the number of items. We then fit item response theory (IRT) models and computed Cronbach's alpha for each domain. Last, we examined the construct validity of the FHIT and evaluated scoring approaches. RESULTS: After dropping 8 items, CFA supported a five factor model of topical fluoride hesitancy, with no cross-loadings (RMSEA = 0.079; SRMR = 0.057; CFI = 0.98; TLI = 0.98). We further reduced the items to four per domain (20 items total). Marginal alphas showed that the item sets provided reliability of ≥0.90 at hesitancy levels at and above average. The domains correlated more strongly with each other and topical fluoride refusal than with other questions on the survey. DISCUSSION: Our results support the FHIT's ability to reliably and validly measure five domains of topical fluoride hesitancy using the average score of the four items in each domain.

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BACKGROUND: Although systemic inequities, broadly defined, are associated with health disparities in adults, there is a dearth of research linking contextual measures of exclusionary policies or prejudicial attitudes to health impairments in children, particularly among Latino populations. In this study, we examined a composite measure of systemic inequities in relation to the cooccurrence of multiple health problems in Latino children in the United States. METHODS: Participants included 17 855 Latino children aged 3 to 17 years from the National Survey of Children's Health (2016-2020). We measured state-level systemic inequities using a factor score that combined an index of exclusionary state policies toward immigrants and aggregated survey data on prejudicial attitudes toward immigrants and Latino individuals. Caregivers reported on 3 categories of child health problems: common health difficulties in the past year, current chronic physical health conditions, and current mental health conditions. For each category, we constructed a variable reflecting 0, 1, or 2 or more conditions. RESULTS: In models adjusted for sociodemographic covariates, interpersonal discrimination, and state-level income inequality, systemic inequities were associated with 1.13 times the odds of a chronic physical health condition (95% confidence interval: 1.02-1.25) and 1.24 times the odds of 2 or more mental health conditions (95% confidence interval: 1.06-1.45). CONCLUSIONS: Latino children residing in states with higher levels of systemic inequity are more likely to experience mental health or chronic physical health conditions relative to those in states with lower levels of systemic inequity.

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BACKGROUND: There is little longitudinal information about the type and frequency of harm resulting from medication errors among outpatient children with cancer. We aimed to characterize rates and types of medication errors and harm to outpatient children with leukemia and lymphoma over 7 months of treatment. METHODS: We recruited children taking medications at home for leukemia or lymphoma from three pediatric cancer centers. Errors were identified by chart review, in-home medication review, observation of administration, and interviews. Physician reviewers confirmed error (Fleiss' κ = 0.95), harm (Fleiss' κ = 0.82), and suggested interventions. Generalized linear mixed models with random effects were used to account for clustering by site. RESULTS: Among 131 children taking 1669 medications with 367 home visits, 408 errors were identified, including 242 with potential for harm and 39 with harm (1.0 harm per 1000 patient-days [95% CI, 0.1-9.8]). Ten percent of children were injured by errors and 42% had errors with potential for harm. Twenty-six percent of caregivers reported that miscommunication led to missed doses or overdoses at home. Children on >13 medications had significantly more serious medication errors than those on fewer medications (77% vs 61%; p = .05). Physician reviewers judged that improved communication among caregivers and between caregivers and clinicians may have prevented the most harm (66%). CONCLUSIONS: In this longitudinal study, 10% children with leukemia or lymphoma experienced adverse drug events because of outpatient medication errors. Improvements addressing communication with and among caregivers should be codeveloped with families and based on human-factors engineering. PLAIN LANGUAGE SUMMARY: In this longitudinal study, medication errors in the clinic, pharmacy, or at home among children with leukemia or lymphoma over a 7-month period were common, and 10% suffered harm because of errors. Children on >13 medications had significantly more serious medication errors than those on fewer medications (77% vs 61%; p = .05). Physician reviewers judged that improved communication among caregivers and between caregivers and clinicians may have prevented the most harm (66%). Improvements addressing communication with and among caregivers should be codeveloped with families and based on human-factors engineering.

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PURPOSE: Caregivers who oppose topical fluoride in dental settings may be opposed to other preventive health treatments, including COVID-19 vaccines. The study objective was to examine the association between caregiver opposition to topical fluoride and COVID-19 vaccines. METHODS: The study took place at the University of Washington in Seattle, WA. English-speaking caregivers of children aged < 18 years were eligible to participate. An 85-item REDCap survey was administered from February to September 2021. The predictor variable was topical fluoride opposition (no/yes). The outcome was COVID-19 vaccine opposition (no/yes). The models included the following covariates: child and caregiver age; caregiver race and ethnicity, education level, dental insurance type, parenting style, political ideology, and religiosity; and household income. Logistic regression models generated odds ratios (OR) and 95 % confidence intervals (α = 0.05). RESULTS: Six-hundred-fifty-one caregivers participated, and 403 caregivers with complete data were included in the final regression model. Mean child age was 8.5 years (SD 4.2), mean caregiver age was 42.1 years (SD 9.1), 53.0 % of caregivers were female, 57.3 % self-reported as white, and 65.5 % were insured by Medicaid. There was a significant positive association between topical fluoride and COVID-19 vaccine opposition (OR = 3.13; 95 % CI: 1.87, 5.25; p < 0.001). Other factors associated with COVID-19 vaccine opposition included conservative political views (OR = 2.77; 95 % CI: 1.26, 6.08; p < 0.011) and lower education (OR = 3.47; 95 % CI: 1.44, 8.38; p < 0.006). CONCLUSIONS: Caregivers opposed to topical fluoride in dental settings were significantly more likely to oppose COVID-19 vaccines for their child. Future research should identify ways to address both topical fluoride and vaccine opposition to prevent diseases in children.

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ABSTRACT: Pain is a common problem among children, particularly those with pediatric chronic diseases. Multifaceted assessment of pain can improve communication about pain and help clinicians characterize, differentiate, and treat a patient's unique experience of pain. Pain quality is an important domain of pain, describing the subjective sensory experiences associated with pain as well as the affective experiences of pain. The aim of the current study was to quantitatively evaluate the measurement properties of the 59 Patient-Reported Outcomes Measurement Information System pediatric pain quality candidate items developed as part of the National Institutes of Health's Patient-Reported Outcomes Measurement Information System initiative with input from children and adolescents with chronic pain. Participants included N = 448 pediatric patients between 8 and 18 years of age with chronic health conditions with a prominent component of chronic or recurrent pain, including juvenile fibromyalgia, juvenile idiopathic arthritis, and sickle cell disease. A confirmatory factor analysis revealed a unidimensional model fit the data best, with 56 of the 59 items demonstrating good psychometric properties for inclusion in the final measure. In addition, a consensus-building method was used to establish 2 versions of a short form measure-one with 8 items focused primarily on the sensory pain qualities and one with 8 items focused on affective pain qualities. The final measure shows good reliability and validity, and is recommended for use in research and clinical care with pediatric populations.

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The objectives of this study were to (1) demonstrate the application of percentiles to advance the interpretation of patient-reported outcomes and (2) establish autism-specific percentiles for four Patient-Reported Outcomes Measurement Information System (PROMIS) measures. PROMIS measures were completed by parents of autistic children and adolescents ages 5-17 years as part of two studies (n = 939 parents in the first study and n = 406 parents in the second study). Data from the first study were used to develop autism-specific percentiles for PROMIS parent-proxy sleep disturbance, sleep-related impairment, fatigue, and anxiety. Previously established United States general population percentiles were applied to interpret PROMIS scores in both studies. Results of logistic regression models showed that parent-reported material hardship was associated with scoring in the moderate-severe range (defined as ≥75th percentile in the general population) on all four PROMIS measures (odds ratios 1.7-2.2). In the second study, the percentage of children with severe scores (defined as ≥95th percentile in the general population) was 30% for anxiety, 25% for sleep disturbance, and 17% for sleep-related impairment, indicating a high burden of these problems among autistic children. Few children had scores at or above the autism-specific 95th percentile on these measures (3%-4%), indicating that their scores were similar to other autistic children. The general population and condition-specific percentiles provide two complementary reference points to aid interpretation of PROMIS scores, including corresponding severity categories that are comparable across different PROMIS measures.

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This study determined the types of tobacco products used by caregivers who presented to infant well-child visits (WCVs), tobacco product use by other household members, and caregivers' readiness to quit. The Ohio Chapter of the American Academy of Pediatrics conducted a 10-month quality improvement collaborative to improve providers' tobacco screening and cessation counseling practices. A sub-analysis of the initial screenings was performed to determine types of tobacco products used and caregivers' readiness to quit. Fourteen practices (60 providers) participated, and 3972 initial screens were analyzed; 320 (8.1%) caregivers and 490 (12.4%) household members used tobacco products. Most smoking caregivers and household members exclusively used cigarettes (79% and 72%, respectively). There was no difference in caregiver intention to quit by tobacco type, yet 53% of smoking caregivers were ready to quit. Providers should provide screening and cessation counseling to caregivers of infants at WCVs since many are ready to quit.

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Parents of 30 school-age children with Down syndrome participated in a small-scale randomized clinical trial of a behavioral sleep treatment designed specifically for children with Down syndrome. The aim was to improve child sleep, child daytime behavior problems, caregiver sleep, and caregiver stress. The intervention spanned 5-8 weeks, and assessments occurred pre-treatment, immediately post-treatment, and three months post-treatment using a double-blinded design. Both the active treatment and a treatment-as-usual attention-controlled comparison group showed improvements in actigraphy and parent-report measures of child sleep, parent-reported child internalizing behaviors, and actigraphy measures of parent-sleep. The behavioral sleep treatment did not yield significantly different outcomes than a treatment-as-usual approach supplemented with non-sleep-specific behavioral or education sessions. Possible interpretations of study findings are discussed.

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OBJECTIVE: To demonstrate how to interpret Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric patient-reported outcome measure (PROM) scores for patients with pediatric inflammatory bowel disease (IBD). METHODS: Using data from a prospective cohort study of patients ages 8 to 23 years with IBD (n = 1049), we established disease-specific percentiles and computed the minimal clinically important difference (MCID) change score for 6 pediatric PROMs. We applied these results, general population percentiles, and the reliable change index to interpret PROM scores in a clinical trial sample of patients ages 8 to 20 years with IBD (n = 294) in which PROMIS PROMs were obtained at baseline and 3 months later. RESULTS: Application of general population percentiles showed that the clinical trial sample at baseline had moderately worse self-reported health than the general population (22% of patients at or above the 95th percentile on Fatigue; 21% on Pain Interference). IBD-specific percentiles showed that the sample was somewhat worse than the reference IBD sample (8% of patients at or above the 95th percentile on Fatigue; 11% on Pain Interference). Application of the MCID threshold indicated that among the subgroup of patients that improved by 15 or more on the short Pediatric Crohn's Disease Activity Index (n = 38), 45% also improved on IBD Symptoms, 47% for Fatigue, and 65% for Pain Interference. CONCLUSION: This study established IBD-specific percentiles for 6 pediatric PROMIS measures and demonstrated the application of percentiles and other methods for interpreting PROM scores.

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OBJECTIVE: To determine the prevalence of poor mental and physical health among mothers of children with special health care needs (CSHCN) and to determine the association between maternal health and the child's number of special health care needs (SHCN) and severity of ability limitation. METHODS: We used the combined 2016-2018 National Survey of Children's Health Dataset of 102,341 children ages 0-17 including 23,280 CSHCN. We used regression models to examine the associations of a child's number of SHCN and ability limitations with maternal health. RESULTS: Twice as many mothers of CSHCN had poor mental and physical health compared to non-CSHCN (mental 10.3% vs. 4.0%, p < .001; physical 11.9% vs 5.0%, p < .001). In regression models, increased number of SHCN and severity of activity limitations were associated with significantly increased odds of poor maternal health. CONCLUSIONS FOR PRACTICE: Mothers of CSHCN have worse health compared to mothers of non-CSHCN, especially those who experience social disadvantage and those with children with complex SHCN or severe ability limitations. Interventions to improve the health of these particularly vulnerable caregivers of CSHCN are warranted.

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OBJECTIVES: To evaluate whether Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric patient-reported outcome (PRO) measures can serve as valid endpoints in a clinical trial of a chronic pediatric illness. STUDY DESIGN: We evaluated the responsiveness of PROMIS pediatric measures collected through the Clinical Outcomes of Methotrexate Binary Therapy in Practice (COMBINE) trial, a multicenter, randomized, double-blind, placebo-controlled, pragmatic clinical trial in pediatric patients with Crohn's disease (CD). We examined the relationships between changes in PROMIS pediatric measures and changes in disease activity by evaluating PRO score changes among patients who did and patients who did not experience improvement in disease activity. RESULTS: Participants included 266 children and adolescents with CD from a total of 35 institutions. Over the course of follow-up, participants showed improvement in most PRO domains, with the largest effect sizes observed for the clinically improved group. Patients who maintained steroid-free remission showed significantly lower PRO scores for the Pain Interference, Fatigue, and inflammatory bowel disease (IBD) Symptoms domains and higher scores for the Positive Affect domain. CONCLUSIONS: This study demonstrates the responsiveness of the PROMIS pediatric measures of Fatigue and Pain Interference as study endpoints in a large, multicenter pragmatic trial in pediatric CD, extending a growing body of research supporting the use of PROMIS pediatric measures as reliable PRO endpoints for clinical trials.

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Introduction: Efficient methods to obtain and benchmark national data are needed to improve comparative quality assessment for children with type 1 diabetes (T1D). PCORnet is a network of clinical data research networks whose infrastructure includes standardization to a Common Data Model (CDM) incorporating electronic health record (EHR)-derived data across multiple clinical institutions. The study aimed to determine the feasibility of the automated use of EHR data to assess comparative quality for T1D. Methods: In two PCORnet networks, PEDSnet and OneFlorida, the study assessed measures of glycemic control, diabetic ketoacidosis admissions, and clinic visits in 2016-2018 among youth 0-20 years of age. The study team developed measure EHR-based specifications, identified institution-specific rates using data stored in the CDM, and assessed agreement with manual chart review. Results: Among 9,740 youth with T1D across 12 institutions, one quarter (26%) had two or more measures of A1c greater than 9% annually (min 5%, max 47%). The median A1c was 8.5% (min site 7.9, max site 10.2). Overall, 4% were hospitalized for diabetic ketoacidosis (min 2%, max 8%). The predictive value of the PCORnet CDM was >75% for all measures and >90% for three measures. Conclusions: Using EHR-derived data to assess comparative quality for T1D is a valid, efficient, and reliable data collection tool for measuring T1D care and outcomes. Wide variations across institutions were observed, and even the best-performing institutions often failed to achieve the American Diabetes Association HbA1C goals (<7.5%).

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BACKGROUND: Atopic dermatitis (AD) causes sleep disturbance but the epidemiology is not known. OBJECTIVE: To estimate the US prevalence of sleep disturbance and its impact on psychological and neurocognitive function. METHODS: We conducted a cross-sectional survey of 180 parent-child dyads with AD using stratified sampling based on disease severity (Patient Oriented Eczema Measure: mild [n = 30), moderate (n = 75) or severe (n = 75]), age, and race (White or Black or African American or other). Symptoms of sleep and psychologic health were assessed using the Patient-Reported Outcome Measurement Information System. To estimate the prevalence of sleep disturbance, we calculated weights using poststratification adjustment making marginal frequencies of AD severity, race, and age similar to marginal frequencies in the 2007 National Survey of Children's Health. Unweighted regression models examined associations with sleep disturbance. RESULTS: In children age 5 to 17 years with AD, we estimated that sleep disturbance occurred in 66.9% (95% confidence interval, 53.3% to 80.5%; 3,116,305 children). The odds of severe sleep disturbance (worse than 95% of US children) were highest in moderate to severe versus mild AD (2.03 [1.00-4.10]; P = .0495; compared with 8.68 [1.82-41.49]; P = .0068). Predictors of parent proxy-reported sleep disturbance were itch intensity (adjusted ß [95% confidence interval] 1.33 [0.62-2.04]) and low income (<$50,000: 6.64 [2.05-11.23]; and $50,000 to less than 100,000: 4.75 [0.35-9.14]). Controlling for disease severity, itch intensity, and significant sociodemographics-parent-proxy, reported sleep disturbance was associated with increased severity of sleep-related impairment, depression, fatigue, and anxiety, in addition to worse inattention and impulsivity. In fully adjusted models, children who self-reported sleep disturbance (T-score ≥60) had increased odds of sleep-related impairment (1.20 [1.11-1.29]), depression (1.13 [1.03, 1.24]), fatigue (1.28 [1.06-1.54]), and anxiety (1.16 [1.02-1.31]). CONCLUSIONS: Sleep disturbance is a common symptom of AD. It affects about 3 million US children and is associated with neuropsychiatric impairment, including depression, anxiety, and inattention. Clinicians should screen for these symptoms in school-aged children, particularly those with moderate to severe AD.

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OBJECTIVE: This article guides researchers through the process of specifying, troubleshooting, evaluating, and interpreting latent growth mixture models. METHODS: Latent growth mixture models are conducted with small example dataset of N = 117 pediatric patients using Mplus software. RESULTS: The example and data show how to select a solution, here a 3-class solution. We also present information on two methods for incorporating covariates into these models. CONCLUSIONS: Many studies in pediatric psychology seek to understand how an outcome changes over time. Mixed models or latent growth models estimate a single average trajectory estimate and an overall estimate of the individual variability, but this may mask other patterns of change shared by some participants. Unexplored variation in longitudinal data means that researchers can miss critical information about the trajectories of subgroups of individuals that could have important clinical implications about how one assess, treats, and manages subsets of individuals. Latent growth mixture modeling is a method for uncovering subgroups (or "classes") of individuals with shared trajectories that differ from the average trajectory.

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BACKGROUND: Nonadherence to immunosuppression is common among pediatric, adolescent, and young adult kidney transplant recipients and a leading cause of graft loss. Assessing barriers to medication adherence in clinical practice may identify patients at risk for rejection and provide therapeutic targets. METHODS: Kidney transplant patients and/or their caregivers were assessed for 14 barriers to medication adherence using the barriers assessment tool. We compared rejection rates between patients with at least one reported adherence barrier to those without reported adherence barriers using a Kaplan-Meier estimator and Cox proportional hazard models to adjust for other mediators of acute rejection at 2 years following barriers assessment. RESULTS: Ninety-eight patients were assessed for barriers to adherence. Over the 2-year observation period, 22 patients developed biopsy-proven acute rejection (BPAR). Kaplan-Meier estimates show that patients with an identified barrier to adherence were more likely to have BPAR (p = 0.02) than patients without an identified barrier in the 24 months following barriers assessment. The median time to rejection for patients who experienced acute rejection was 175.5 days (IQR 63-276 days) from the time of barriers assessment. An identified barrier to adherence remained the only statistically significant predictor of BPAR with Cox modeling (HR 2.6, p = 0.04), after accounting for age, sex, and race. CONCLUSIONS: Pediatric and adolescent kidney transplant recipients with identified adherence barriers are at increased risk for acute rejection. Barriers to adherence provide a potentially modifiable therapeutic target that can be assessed in clinic to guide targeted interventions.

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PURPOSE: This study's aim was to use a representative sample of the US pediatric population to estimate percentiles for several PROMIS pediatric measures: Anger, Anxiety, Depressive Symptoms, Family Relationships, Fatigue, Global Health, Life Satisfaction, Meaning and Purpose, Pain Behavior, Pain Interference, Physical Activity, Physical Function Mobility, Physical Function Upper Extremity, Physical Stress Experiences, Positive Affect, Psychological Stress Experiences, Sleep Disturbance, Sleep Impairment, and Peer Relationships. METHODS: We used two separate, nationally representative samples of parents and children aged 5-17 years drawn in different years from the GfK Knowledge Panel, a dual-frame online probability panel. RESULTS: All measures that were developed using a representative sample had a median at or near the expected value of 50. For the other measures, the 50th percentile was often 10 points or more from 50. Several domains had high floors or low ceilings. No domain's percentiles completely corresponded to the percentiles associated with a normal distribution with a mean of 50 and standard deviation of 10. CONCLUSIONS: This work allows users to interpret a child's self-reported quality of life relative to children in the US general population. When attempting to evaluate whether a child falls above or below other children in the US, one should use the values presented in this study. In addition, we recommend that users should focus on whether a child's score falls into one of a few broad severity groups rather than on specific percentile scores.

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PURPOSE: Cyclin-dependent kinase-retinoblastoma (CDK-RB) pathway is dysregulated in some diffuse intrinsic pontine gliomas (DIPG). We evaluated safety, feasibility, and early efficacy of the CDK4/6-inhibitor ribociclib, administered following radiotherapy in newly-diagnosed DIPG patients. METHODS: Following radiotherapy, eligible patients received ribociclib in 28-day cycles (350 mg/m2; 21 days on/7 days off). Feasibility endpoints included tolerability for at least 6 courses, and a less than 2-week delay in restarting therapy after 1 dose reduction. Early efficacy was measured by 1-year and median overall survival (OS). Patient/parent-by-proxy reported outcomes measurement information system (PROMIS) assessments were completed prospectively. RESULTS: The study included 10 evaluable patients, 9 DIPG and 1 diffuse midline glioma (DMG)-all 3.7 to 19.8 years of age. The median number of courses was 8 (range 3-14). Three patients required dose reduction for grade-4 neutropenia, and 1 discontinued therapy for hematological toxicity following course 4. The most common grade-3/4 toxicity was myelosuppression. After 2 courses, MRI evaluations in 4 patients revealed increased necrotic volume, associated with new neurological symptoms in 3 patients. The 1-year and median OS for DIPG was 89% and 16.1 months (range 10-30), respectively; the DMG patient died at 6 months post-diagnosis. Five patients donated brain tissue and tumor; 3 were RB+ . CONCLUSIONS: Ribociclib administered following radiotherapy is feasible in DIPG and DMG. Increased tumor necrosis may represent a treatment effect. These data warrant further prospective volumetric analyses of tumors with necrosis. Feasibility and stabilization findings support further investigation of ribociclib in combination therapies. TRIAL REGISTRATION: NCT02607124.

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