The Study of the Epidemiology of Pediatric Hypertension Registry (SUPERHERO): Rationale and Methods.

Despite increasing prevalence of hypertension in youth and high adult cardiovascular mortality rates, the long-term consequences of youth-onset hypertension remain unknown. This is due to limitations of prior research such as small sample sizes, reliance on manual record review, and limited analytic methods that did not address major biases. The Study of the Epidemiology of Pediatric Hypertension (SUPERHERO) is a multisite retrospective Registry of youth evaluated by subspecialists for hypertension disorders. Sites obtain harmonized electronic health record data using standardized biomedical informatics scripts validated with randomized manual record review. Inclusion criteria are index visit for International Classification of Diseases Diagnostic Codes, 10th Revision (ICD-10 code)-defined hypertension disorder ≥January 1, 2015 and age <19 years. We exclude patients with ICD-10 code-defined pregnancy, kidney failure on dialysis, or kidney transplantation. Data include demographics, anthropomorphics, U.S. Census Bureau tract, histories, blood pressure, ICD-10 codes, medications, laboratory and imaging results, and ambulatory blood pressure. SUPERHERO leverages expertise in epidemiology, statistics, clinical care, and biomedical informatics to create the largest and most diverse registry of youth with newly diagnosed hypertension disorders. SUPERHERO's goals are to (i) reduce CVD burden across the life course and (ii) establish gold-standard biomedical informatics methods for youth with hypertension disorders.

Better Guidelines and Policies: AAP's Partnership for Policy Implementation.

OBJECTIVES: In 2005, the American Academy of Pediatrics founded the Partnership for Policy Implementation (PPI). The PPI has collaborated with authors to improve the quality of clinical guidelines, technical reports, and policies that standardize care delivery, improve care quality and patient outcomes, and reduce variation and costs. METHODS: In this article, we describe how the PPI trained informaticians apply a variety of tools and techniques to these guidance documents, eliminating ambiguity in clinical recommendations and allowing guideline recommendations to be implemented by practicing clinicians and electronic health record (EHR) developers more easily. RESULTS: Since its inception, the PPI has participated in the development of 45 published and 27 in-progress clinical practice guidelines, policy statements, technical and clinical reports, and other projects endorsed by the American Academy of Pediatrics. The partnership has trained informaticians to apply a variety of tools and techniques to eliminate ambiguity or lack of decidability and can be implemented by practicing clinicians and EHR developers. CONCLUSIONS: With the increasing use of EHRs in pediatrics, the need for medical societies to improve the clarity, decidability, and actionability of their guidelines has become more important than ever.

Automated generation of comparator patients in the electronic medical record.

Background: Well-designed randomized trials provide high-quality clinical evidence but are not always feasible or ethical. In their absence, the electronic medical record (EMR) presents a platform to conduct comparative effectiveness research, central to the emerging academic learning health system (aLHS) model. A barrier to realizing this vision is the lack of a process to efficiently generate a reference comparison group for each patient. Objective: To test a multi-step process for the selection of comparators in the EMR. Materials and Methods: We conducted a mixed-methods study within a large aLHS in North Carolina. We (1) created a list of 35 candidate variables; (2) surveyed 270 researchers to assess the importance of candidate variables; and (3) built consensus rankings around survey-identified variables (ie, importance scores >7) across two panels of 7-8 clinical research experts. Prioritized algorithm inputs were collected from the EMR and applied using a greedy matching technique. Feasibility was measured as the percentage of patients with 100 matched comparators and performance was measured via computational time and Euclidean distance. Results: Nine variables were selected: age, sex, race, ethnicity, body mass index, insurance status, smoking status, Charlson Comorbidity Index, and neighborhood percentage in poverty. The final process successfully generated 100 matched comparators for each of 1.8 million candidate patients, executed in less than 100 min for the majority of strata, and had average Euclidean distance 0.043. Conclusion: EMR-derived matching is feasible to implement across a diverse patient population and can provide a reproducible, efficient source of comparator data for observational studies, with additional testing in clinical research applications needed.

The 'Product Environment' is an Important Driver of Health. It's Time to Measure It.

Through their products and services, businesses have a meaningful impact on their customers' health. When markets reward products that induce unhealthy behaviors, like poor diet and limited physical activity, they fuel the chronic disease epidemic. For market mechanisms to reward positive, and to punish negative, influences on healthy behaviors, companies' influences will need to be measured. Inspired by the technique of health impact assessment, we propose an approach to measuring these influences, based on examining usage patterns and the activities that result from a given product or service and then mapping those experiences to a core set of health behaviors.

Even Children Can Have High Blood Pressure.

This JAMA Pediatrics Patient Page describes high blood pressure in children.

Evaluation for Bleeding Disorders in Suspected Child Abuse.

Bruising or bleeding in a child can raise the concern for child abuse. Assessing whether the findings are the result of trauma and/or whether the child has a bleeding disorder is critical. Many bleeding disorders are rare, and not every child with bruising/bleeding that may raise a concern for abuse requires an evaluation for bleeding disorders. However, in some instances, bleeding disorders can present in a manner similar to child abuse. Bleeding disorders cannot be ruled out solely on the basis of patient and family history, no matter how extensive. The history and clinical evaluation can be used to determine the necessity of an evaluation for a possible bleeding disorder, and prevalence and known clinical presentations of individual bleeding disorders can be used to guide the extent of laboratory testing. This clinical report provides guidance to pediatricians and other clinicians regarding the evaluation for bleeding disorders when child abuse is suspected.

Using Electronic Health Records for the Learning Health System: Creation of a Diabetes Research Registry.

Electronic health records (EHRs) were originally developed for clinical care and billing. As such, the data are not collected, organized, and curated in a fashion that is optimized for secondary use to support the Learning Health System. Population health registries provide tools to support quality improvement. These tools are generally integrated with the live EHR, are intended to use a minimum of computing resources, and may not be appropriate for some research projects. Researchers may require different electronic phenotypes and variable definitions from those typically used for population health, and these definitions may vary from study to study. Establishing a formal registry that is mapped to the Observation Medical Outcomes Partnership common data model provides an opportunity to add custom mappings and more easily share these with other institutions. Performing preprocessing tasks such as data cleaning, calculation of risk scores, time-to-event analysis, imputation, and transforming data into a format for statistical analyses will improve efficiency and make the data easier to use for investigators. Research registries that are maintained outside the EHR also have the luxury of using significant computational resources without jeopardizing clinical care data. This paper describes a virtual Diabetes Registry at Atrium Health Wake Forest Baptist and the plan for its continued development.

Social Risk Factors Influence Pediatric Emergency Department Utilization and Hospitalizations.

OBJECTIVE: To characterize the association of children's social risk factors with total number of emergency department (ED) visits or hospitalization and time to first subsequent ED or hospitalization. STUDY DESIGN: This was a retrospective cohort study of patients seen at a general pediatric clinic between 2017 and 2021 with documented ≥1 social risk factors screened per visit. Negative binomial or Poisson regression modeled ED utilization and hospitalizations as functions of the total number of risk factors or each unique risk factor. Time-varying Cox models were used to evaluate differences between those who screened positive and those who screened negative, controlling for demographic and clinical covariates. RESULTS: Overall, 4674 patients (mean age, 6.6 years; 49% female; 64% Hispanic; 21% Black) were evaluated across a total of 20 927 visits. Children with risk factors had higher rates of attention-deficit hyperactivity disorder, failure to gain weight, asthma, and prematurity compared with children with no risk (all P < .01). Adjusted models show a positive association between increased total number of factors and ED utilization (incidence rate ratio [IRR], 1.18; 95% CI, 1.12-1.23) and hospitalizations (IRR, 1.36; 95% CI, 1.26-1.47). There were no associations between a positive screen and time to first ED visit (hazard ratio [HR], 0.95; 95% CI, 0.85-1.06; P = .36) or hospitalization (HR, 1.15; 95% CI, 0.84-1.59; P = .40). CONCLUSIONS: Social risk factors were associated with increased ED utilization and hospitalizations at the patient level but were not significantly associated with time to subsequent acute care use. Future research should evaluate the effect of focused interventions on health care utilization, such as those addressing food insecurity and transportation challenges.

Screening for Problematic Sleep in a Diverse Sample of Infants.

OBJECTIVE: To examine screening strategies for identifying problematic sleep in a diverse sample of infants. METHODS: Parents of infants (5-19 months; N = 3,271) presenting for a primary care visit responded to five screening items and the Infant Sleep Questionnaire (ISQ), a validated measure of problematic infant sleep. If parents responded affirmatively to any screening item, primary care providers received a prompt to evaluate. For each of the screening questions, we examined differences in item endorsement and criterion related validity with the ISQ. Using conceptual composites of night waking and sleep difficulty, prevalence, criterion-related validity, and concurrent demographic correlates were analyzed. RESULTS: Infants were primarily of Black race (50.1%) or Hispanic ethnicity (31.7%), with the majority (63.3%) living in economically distressed communities. Rates of problematic sleep ranged from 7.4%, for a single item assessing parental perception of an infant having a sleep problem, to 74.0%, for a single item assessing night wakings requiring adult intervention. Items assessing sleep difficulty had high (95.0-97.8%) agreement with the ISQ in identifying infants without problematic sleep, but low agreement (24.9-34.0%) in identifying those with problematic sleep. The opposite was true for items assessing night waking, which identified 91.0-94.6% of those with sleep problems but only 31.8-46.9% of those without. CONCLUSIONS: Screening strategies for identifying problematic infant sleep yielded highly variable prevalence rates and associated factors, depending on whether the strategy emphasized parent-perceived sleep difficulty or night wakings. The strategy that is most appropriate will depend on the system's goals.

How can healthcare professionals provide guidance and support to parents of adolescents? Results from a primary care-based study.

BACKGROUND: This study explored the rewards and difficulties of raising an adolescent and investigated parents' level of interest in receiving guidance from healthcare providers on parenting and adolescent health topics. Additionally, this study investigated whether parents were interested in parenting programs in primary care and explored methods in which parents want to receive guidance. METHODS: Parents of adolescents (ages 12-18) who attended an outpatient pediatric clinic with their adolescent were contacted by telephone and completed a short telephone survey. Parents were asked open-ended questions regarding the rewards and difficulties of parenting and rated how important it was to receive guidance from a healthcare provider on certain parenting and health topics. Additionally, parents reported their level of interest in a parenting program in primary care and rated how they would like to receive guidance. RESULTS: Our final sample included 104 parents, 87% of whom were interested in a parenting program within primary care. A variety of parenting rewards and difficulties were associated with raising an adolescent. From the list of parenting topics, communication was rated very important to receive guidance on (65%), followed by conflict management (50%). Of health topics, parents were primarily interested in receiving guidance on sex (77%), mental health (75%), and alcohol and drugs (74%). Parents in the study wanted to receive guidance from a pediatrician or through written literature. CONCLUSIONS: The current study finds that parents identify several rewarding and difficult aspects associated with raising an adolescent and are open to receiving guidance on a range of parenting topics in a variety of formats through primary care settings. Incorporating such education into healthcare visits could improve parents' knowledge. Healthcare providers are encouraged to consider how best to provide parenting support during this important developmental time period.

Improving Patient-Centered Communication about Sudden Unexpected Death in Epilepsy through Computerized Clinical Decision Support.

BACKGROUND: Sudden unexpected death in epilepsy (SUDEP) is a rare but fatal risk that patients, parents, and professional societies clearly recommend discussing with patients and families. However, this conversation does not routinely happen. OBJECTIVES: This pilot study aimed to demonstrate whether computerized decision support could increase patient communication about SUDEP. METHODS: A prospective before-and-after study of the effect of computerized decision support on delivery of SUDEP counseling. The intervention was a screening, alerting, education, and follow-up SUDEP module for an existing computerized decision support system (the Child Health Improvement through Computer Automation [CHICA]) in five urban pediatric primary care clinics. Families of children with epilepsy were contacted by telephone before and after implementation to assess if the clinician discussed SUDEP at their respective encounters. RESULTS: The CHICA-SUDEP module screened 7,154 children age 0 to 21 years for seizures over 7 months; 108 (1.5%) reported epilepsy. We interviewed 101 families after primary care encounters (75 before and 26 after implementation) over 9 months. After starting CHICA-SUDEP, the number of caregivers who reported discussing SUDEP with their child's clinician more than doubled from 21% (16/75) to 46% (12/26; p = 0.03), and when the parent recalled who brought up the topic, 80% of the time it was the clinician. The differences between timing and sampling methodologies of before and after intervention cohorts could have led to potential sampling and recall bias. CONCLUSION: Clinician-family discussions about SUDEP significantly increased in pediatric primary care clinics after introducing a systematic, computerized screening and decision support module. These tools demonstrate potential for increasing patient-centered education about SUDEP, as well as incorporating other guideline-recommended algorithms into primary and subspecialty cares. CLINICAL TRIAL REGISTRATION: clinicaltrials.gov, NCT03502759.

Enhancing Safe Sleep Counseling by Pediatricians through a Quality Improvement Learning Collaborative.

BACKGROUND: Approximately, 3,500 infants die annually from sleep-related infant deaths in the United States. We sought to improve pediatricians' counseling on safe sleep from birth through 6 months of age through a virtual quality improvement learning collaborative (QILC). Our aim was appropriate screening, counseling, and documentation of safe sleep advice in 75% of eligible patient encounters after the QILC. METHODS: We formed a 9-month QILC for inpatient and outpatient pediatricians. Pediatricians collected data on safe sleep documentation in a newborn discharge or well-child visit note. Data were submitted at baseline and in 9 subsequent phases. Participants met monthly via a webinar, which included a QI presentation, data review, and facilitated discussion among participants. Practices were contacted 12 months after the conclusion of the QILC to assess sustainment. RESULTS: Thirty-four pediatricians from 4 inpatient and 9 outpatient practices participated in the QILC. At baseline, documentation of safe sleep practices varied greatly (0%-98%). However, by the end of the QILC, all participating practices were documenting safe sleep guidance in over 75% of patient encounters. Aggregate practice data show a significant, sustained improvement. The 12-month follow-up data were submitted from 62% of practices, with sustainment of improvement in 75% of practices. CONCLUSION: A facilitated, virtual QILC is an effective methodology to improve safe sleep counseling among a diverse group of pediatric practices. It is one step in improving consistent messaging around safe sleep by healthcare providers as pediatricians work to decrease sleep-related infant deaths.

Clinician Perceptions of a Computerized Decision Support System for Pediatric Type 2 Diabetes Screening.

OBJECTIVE: With the increasing prevalence of type 2 diabetes (T2D) in youth, primary care providers must identify patients at high risk and implement evidence-based screening promptly. Clinical decision support systems (CDSSs) provide clinicians with personalized reminders according to best evidence. One example is the Child Health Improvement through Computer Automation (CHICA) system, which, as we have previously shown, significantly improves screening for T2D. Given that the long-term success of any CDSS depends on its acceptability and its users' perceptions, we examined what clinicians think of the CHICA diabetes module. METHODS: CHICA users completed an annual quality improvement and satisfaction questionnaire. Between May and August of 2015 and 2016, the survey included two statements related to the T2D-module: (1) "CHICA improves my ability to identify patients who might benefit from screening for T2D" and (2) "CHICA makes it easier to get the lab tests necessary to identify patients who have diabetes or prediabetes." Answers were scored using a 5-point Likert scale and were later converted to a 2-point scale: agree and disagree. The Pearson chi-square test was used to assess the relationship between responses and the respondents. Answers per cohort were compared using the Mann-Whitney U-test. RESULTS: The majority of respondents (N = 60) agreed that CHICA improved their ability to identify patients who might benefit from screening but disagreed as to whether it helped them get the necessary laboratories. Scores were comparable across both years. CONCLUSION: CHICA was endorsed as being effective for T2D screening. Research is needed to improve satisfaction for getting laboratories with CHICA.

Consulting "Dr. YouTube": an objective evaluation of hypospadias videos on a popular video-sharing website.

INTRODUCTION: Parents who make decisions about hypospadias repair for their child may seek information from online platforms such as YouTube. OBJECTIVE: The purpose of this study is to evaluate the health literacy demand of hypospadias videos on YouTube using the Patient Education Materials Assessment Tool for Audiovisual Materials (PEMAT-A/V). STUDY DESIGN: We performed a YouTube search using the term "hypospadias," limiting results to the first 100 videos. We excluded videos that were <1 min or >20 min and videos that were not in English or did not include subtitles. Two evaluators independently examined videos and determined PEMAT-A/V scores for understandability and actionability (i.e., ability to identify actions the viewer can take). Videos with scores >70% are understandable or actionable. The inter-rater reliability (kappa) and intraclass correlation coefficient (ICC) of PEMAT scores were calculated. Bivariate and multivariable linear regression models assessed the association of video characteristics with respective scores. RESULTS: Of the 100 videos that were identified on YouTube, 47 (47%) were excluded leaving 53 for analysis: 14 were >20 min, 14 were <1 min, 9 had no audio or subtitles, 7 were not in English, 1 was a duplicate, 1 was unrelated to hypospadias, and 1 was deleted at the time of data analysis. Three (5.6%) were understandable (mean score 54.5%, standard deviation (SD) 14.9) and eight (15.1%) were actionable (mean score 21.8%, SD 16.6) (Extended Summary Figure). Kappa values ranged from 0.4 to 1. The ICC's were 0.55 and 0.33 for understandability and actionability, respectively. In the bivariate analysis, mean understandability scores were significantly higher for English language videos (p = 0.04), videos with animation (p = 0.002), and those produced by industry (p = 0.02). In the multivariable analysis, mean understandability scores were significantly higher for "expert testimonial" or "other" video types after adjusting for graphics type and overall tone (p = 0.04). Mean understandability scores were also significantly higher for videos with animation after adjusting for video type and overall tone (p = 0.01). Mean actionability scores were significantly higher for videos with a negative tone (p = 0.01). DISCUSSION: The vast majority of hypospadias-related YouTube content is not appropriate for users with low health literacy although certain types of videos, such those with animation and expert testimonials, scored higher on understandability than other types. CONCLUSION: Due to the lack of sufficient online informational content regarding hypospadias, we plan to engage parents of sons with hypospadias in the development of high-quality patient educational materials about hypospadias.

The Natural Course of Adolescent Depression Treatment in the Primary Care Setting.

INTRODUCTION: Little is known about how adolescents receive depression follow-up in primary care. The purpose of this study was to describe the rates of symptom assessment and depression treatment over time in a group of adolescents screening positive for moderate or severe depression in the primary care setting. METHODS: Retrospective chart reviews were conducted to gather information related to symptom reassessments, antidepressant prescriptions, psychotherapy referrals, and treatment discontinuation. Descriptive statistics were calculated, and a qualitative content analysis was conducted to determine the reasons for treatment discontinuation. RESULTS: Eighty records were reviewed (mean age = 15.3, 73% female, 59% Black). Treatment was initiated for 83% (n = 66) of patients, and 45% (n = 30) of patients discontinued treatment during the review period for a variety of reasons. DISCUSSION: To improve adolescents' adherence to depression treatment, providers should address factors that contribute to treatment discontinuation and use tools to manage depression follow-up care.