BMC Med Inform Decis Mak
December 2024
Background: To protect minors' future autonomy, professional organizations have historically discouraged returning predictive adult-onset genetic test results and carrier status to children. Recent clinical guidance diverges from this norm, suggesting that when minors have genomic sequencing performed for clinical purposes, parents and children should have the opportunity to learn secondary findings, including for some adult-onset conditions. While parents can currently opt in or out of receiving their child's secondary findings, the American Society of Human Genetics Workgroup on Pediatric Genetic and Genomic Testing suggests including adolescents in the decision-making process.
View Article and Find Full Text PDFBackground: Prompt follow-up for positive depression screen results is important in providing high-quality care for adolescents. We sought to improve follow-up within 30 days for adolescents (≥12 years) with Patient Health Questionnaire-9 scores ≥10, or those with a positive question 9, from 25% to 40%.
Methods: We conducted a quality improvement project at 6 primary care locations serving ∼33,300 patients (70% Black, 7.
Background: Families of children with medical complexity (CMC) may face challenges related to Social Determinants of Health (SDoH). Although standardized SDoH screening has been implemented in numerous medical settings, there has been limited study of screening among CMC. Our global aim is to improve access to institutional and community resources for families of CMC with identified needs.
View Article and Find Full Text PDFObjective: To determine the effectiveness of text/telephone outreach messages and personal contact attempts on well-child care (WCC) scheduling and completion and measles, mumps, and rubella (MMR) vaccine receipt.
Methods: We conducted an intent-to-treat, 2 × 2 factorial randomized clinical trial with 3 replications at 3 academic pediatric primary care practices from September 27, 2020 to August 6, 2021. We randomized participants to 1 of 4 groups: 1 automated message (group 1), 2 automated messages (group 2), 1 automated message plus personal contact attempts (group 3), or 2 automated messages plus personal contact attempts (group 4).
Introduction: Parents of infants and young children newly diagnosed with differences of sex development (DSD) commonly face medical and psychosocial management decisions at a time when they are first learning about the condition and cannot consult their child for input. The aim of this study was to identify areas of greatest need for parental decisional support.
Methods: 34 parents of children receiving care for DSD at one of three US children's hospitals participated in a survey to learn what clinical and psychosocial decisions needed to be made on behalf of their child.
Objective: Adapt and test a measure of knowledge for caregivers of children with attention-deficit/hyperactivity disorder (ADHD) and evaluate the impact of the information component of a decision aid (DA) on participant knowledge.
Methods: A set of seven knowledge items were created based on prior knowledge measures and clinical guidelines. As part of a larger cross-sectional survey study of caregivers of children diagnosed with ADHD, caregivers were randomized to one of two arms: 1) a DA arm, where participants reviewed the information component of the Cincinnati Children's Hospital's DA, and 2) a control arm, where participants were not shown a DA.
Background: Juvenile idiopathic arthritis (JIA) is a common pediatric rheumatic condition and is associated with symptoms such as joint pain that can negatively impact health-related quality of life. To effectively manage pain in JIA, young people, their families, and health care providers (HCPs) should be supported to discuss pain management options and make a shared decision. However, pain is often under-recognized, and pain management discussions are not optimal.
View Article and Find Full Text PDFObjective: To examine hypothesized predictors of adolescent and parent involvement in the decision about which genomic results to receive.
Study Design: We conducted a longitudinal cohort study during phase 3 of the electronic Medical Records and Genomics (eMERGE) Network. Dyads reported on how they preferred to make choices (adolescent only, parent only, or jointly).
Importance: Outreach messages to patients overdue for well child care (WCC) can be delivered different ways (ie, telephone calls and text messages). Use of electronic health record patient portals is increasingly common but their effectiveness is uncertain.
Objective: To determine the effectiveness of patient portal outreach messages, with and without the date of the last WCC, on the scheduling and completion of WCC visits and completion of vaccinations.
Objective: To quantitatively validate the preintention factors, behavioral intentions, and implementation factors and examine the relationships theorized by the Unified Theory of Behavior Change (UTBC) model among adolescents with attention-deficit/hyperactivity disorder (ADHD).
Methods: We conducted longitudinal analyses of data from 40 adolescents with ADHD, aged 11 to 15 years old, and their parents, including self-report of UTBC constructs using standardized measures. We collected pharmacy dispensing records for adolescents for the 4 months that followed.
Objective: To determine effectiveness of text/telephone outreach messages, with and without coronavirus disease 2019 (COVID-19) vaccine information.
Study Design: We conducted an intent-to-treat, multiarm, randomized clinical trial with adolescents aged 12-17 years. Eligible patients did not have an adolescent well-care visit in the past year or scheduled in the next 45 days or an active electronic health record portal account.
Although hydroxyurea (HU) is an effective treatment for sickle cell anemia, uptake remains low. Shared decision-making (SDM) is a recommended strategy for HU initiation to elicit family preferences; however, clinicians lack SDM training. We implemented an immersive virtual reality (VR) curriculum at 8 pediatric institutions to train clinicians on SDM that included counseling virtual patients.
View Article and Find Full Text PDFObjective: The objective of this study was to examine the simultaneous impact of patient-related and parent-related factors, medication-related factors, and health care system-related factors on attention-deficit/hyperactivity disorder (ADHD) medication continuity.
Method: Stimulant-naïve children (N = 144, M age = 8 yrs, 71% male) with ADHD completed a methylphenidate (MPH) trial and were followed for 1 year after trial completion and return to community care. Multivariable analysis investigated predictors of (1) having at least 1 filled ADHD prescription after return to community care versus none and (2) having more days covered with medicine after return to community care.
Objectives: Panel management processes have been used to help improve population-level care and outreach to patients outside the health care system. Opportunities to resolve gaps in preventive care are often missed when patients present outside of primary care settings but still within the larger health care system. We hypothesized that we could design a process of "inreach" capable of resolving care gaps traditionally addressed solely in primary care settings.
View Article and Find Full Text PDFObjective: We conducted a pre-post pilot trial to determine the feasibility and acceptability of a multi-component intervention (pre-clinic letter, shared decision making cards and follow-up phone call) designed to facilitate SDM in pediatric inflammatory bowel disease (IBD).
Methods: We recruited physicians (n = 11) caring for IBD patients and families (n = 36) expected to discuss anti-tumor necrosis treatment. We measured feasibility and acceptability of the intervention, observed SDM, perceived SDM, decision conflict, and regret.
Background: Sickle cell anemia (SCA) is a genetic blood disorder that puts children at a risk of serious medical complications, early morbidity and mortality, and high health care utilization. Until recently, hydroxyurea was the only disease-modifying treatment for this life-threatening disease and has remained the only option for children younger than 5 years. Evidence-based guidelines recommend using a shared decision-making (SDM) approach for offering hydroxyurea to children with SCA (HbSS or HbS/β0 thalassemia) aged as early as 9 months.
View Article and Find Full Text PDFObjective: Using a nested, cluster-randomized trial, we tested the hypothesis that a shared decision-making intervention, as part of consent, would improve study-related knowledge.
Methods: We developed a shared decision-makingintervention then randomized sites in a clinical trial to intervention or control (standard consent). We collected participants' knowledge (primary outcome) and decisional support data.
We sought to ascertain whether baseline anxiety/depression and oppositional defiant disorder (ODD) symptoms impacted the experience of short-term methylphenidate (MPH) adverse effects (AEs) in 7- to 11-year-old children with attention-deficit/hyperactivity disorder (ADHD) ( = 171) undergoing a double-blind MPH crossover trial. The Vanderbilt ADHD Diagnostic Parent Rating Scale measured baseline child anxiety/depression and ODD symptomology. The parent-completed Pittsburgh Side Effect Rating Scale assessed the AEs of anxiety, sadness, and irritability at baseline, on placebo, and on three MPH dosages.
View Article and Find Full Text PDFTo maximize outcomes, understand and address the factors that affect adherence.
View Article and Find Full Text PDFObjectives: To examine patient- and provider-level factors associated with receiving attention-deficit/hyperactivity disorder (ADHD) medication treatment in a community care setting. We hypothesized that the likelihood of ADHD medication receipt would be lower in groups with specific patient sociodemographic (eg, female sex, race other than white) and clinical (eg, comorbid conditions) characteristics as well as physician characteristics (eg, older age, more years since completing training).
Study Design: A retrospective cohort study was conducted with 577 children (mean age, 7.
Decision aids (DAs) are central to shared decision making (SDM) interventions, yet little is known about patients' actual DA use. Adequate utilization of DAs could optimize SDM effectiveness. Electronic DAs enable more objective tracking and analysis of actual DA utilization than do paper DAs.
View Article and Find Full Text PDFBackground: The Pediatric Infectious Diseases Society and Infectious Diseases Society of America national childhood community-acquired pneumonia (CAP) guideline encouraged the standard evaluation and treatment of children who were managed as outpatients. Our objectives were to (1) increase adherence to guideline-recommended diagnostics and antibiotic treatment of CAP at 5 pediatric primary care practices (PPCPs) by using quality-improvement methods and (2) evaluate the association between guideline adherence and unscheduled follow-up visits.
Methods: Immunocompetent children >3 months of age with no complex chronic conditions and who were diagnosed with CAP were eligible for inclusion in this stepped-wedge study.
J Child Adolesc Psychopharmacol
December 2018
We aimed to (1) examine differences in observed visual attention and motor activity, as well as comprehension of a science video between children with and without attention-deficit/hyperactivity disorder (ADHD) and (2) explore if psychostimulant medication improves ADHD behaviors and comprehension of a science video in children with ADHD. Children aged 7-11 with ( = 91) and without ( = 45) ADHD watched a science video and then completed a comprehension test. Then, children with ADHD began a 4-week within-subject, randomized, double-blind crossover trial of methylphenidate (MPH).
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