"Research Jam": Engaging patients and other stakeholders through human-centered design to improve translational research.

Effective stakeholder engagement increases research relevance and utility. Though published principles of community-based participatory research and patient-centered outcomes research offer guidance, few resources offer effective techniques to engage stakeholders and translate their engagement into improvements in research process and outcomes. The Indiana Clinical and Translational Sciences Institute (Indiana CTSI) is home to Research Jam (RJ), an interdisciplinary team of researchers, project management professionals, and design experts, that employs human-centered design (HCD) to engage stakeholders in the research process. Establishing HCD services at the Indiana CTSI has allowed for accessible and innovative stakeholder-engaged research. RJ offers services for stakeholder-informed study design, measurement, implementation, and dissemination. RJ's services are in demand to address research barriers pertaining to a diverse array of health topics and stakeholder groups. As a result, the RJ team has grown significantly with both institutional and extramural support. Researchers involved in RJ projects report that working with RJ helped them learn how to better engage with stakeholders in research and changed the way they approach working with stakeholders. RJ can serve as a potential model for effectively engaging stakeholders through HCD to improve translational research.

Developmental-Behavioral Pediatrics 13 Years After the First Board Certification: Evolving Subspecialty.

OBJECTIVE: To examine and define the evolving subspecialty of developmental-behavioral pediatrics (DBP) by analyzing workforce surveys presubspecialty and postsubspecialty certification. METHODS: In 2015, an electronic workforce survey was sent to the members of the American Academy of Pediatrics Section on DBP and Council on Children with Disabilities and the Society for DBP. Answers from the 1998 survey for respondents with subspecialty fellowship training were compared. RESULTS: Compared with the 1998 group of 265 DBPs, the 368 DBPs in the 2015 group were older, more female, and more diverse. In both groups, ≥80% evaluated and treated autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), and developmental delays, but significantly (p < 0.001) fewer cared for children with physical disabilities (e.g., cerebral palsy [58% to 41%], multihandicapped [53% to 39%], neonatal follow-up [47% to 31%], and spina bifida [26% to 13%]) and other disorders (e.g., failure to thrive and obesity/eating disorders [27% to 15%]). Time for new patient and return visits remained the same (1.5 hours and 0.7 hours). Pediatric generalists and family practice physicians initiated most referrals; fewer 2015 DBPs (p < 0.001) reported school districts (83% to 70%) and more reported pediatric subspecialty (57% to 77%; p < 0.001) referrals. Acknowledgment of the need for more community DBP specialists increased from 66% to 80% (p < 0.001). CONCLUSION: Survey data indicated that the workforce is aging and changing. ADHD, ASD, and developmental delays are solidifying as the defining clinical focus of DBP. Current trends can identify training needs, facilitate recruitment, and advocate for system change to support the DBP workforce to respond to the great need.

Assessing Needs and Experiences of Preparing for Medical Emergencies Among Children With Cancer and Their Caregivers.

BACKGROUND: Caregivers of children with cancer can experience stress when seeking care in the emergency department (ED). We sought to assess how caregivers prepare for and manage a medical emergency that arises in the community setting. METHODS: A qualitative evaluation of ED visit preparations taken by children with cancer and their caregivers using self-reported interactive toolkits. Eligible participants included children with cancer (age: 11 to 21 y) currently receiving therapy for cancer diagnosis with an ED visit (besides initial diagnosis) within the previous 2 months and caregivers of same. Participants received a paper toolkit, which were structured as experience maps with several generative activities. Toolkits were transcribed, thematically coded, and iteratively analyzed using NVivo 12.0 software. RESULTS: A total of 25 toolkits were received (7 children, 18 caregivers), with about three quarters of participants living >1 hour from the treating institution. Several important common themes and areas for improvement emerged. Themes included struggles with decision-making regarding when and where to seek ED care, preparing to go to the ED, waiting during the ED visit, repetition of information to multiple providers, accessing of ports, and provider-to-provider and provider-to-caregiver/patient communication. CONCLUSIONS: The information gained from this study has the potential to inform a tool to support this population in planning for and managing emergent medical issues. This tool has the potential to improve patient and caregiver satisfaction, patient-centered outcomes, and clinical outcomes.

Effect of a Computer-Based Decision Support Intervention on Autism Spectrum Disorder Screening in Pediatric Primary Care Clinics: A Cluster Randomized Clinical Trial.

Importance: Universal early screening for autism spectrum disorder (ASD) is recommended but not routinely performed. Objective: To determine whether computer-automated screening and clinical decision support can improve ASD screening rates in pediatric primary care practices. Design, Setting, and Participants: This cluster randomized clinical trial, conducted between November 16, 2010, and November 21, 2012, compared ASD screening rates among a random sample of 274 children aged 18 to 24 months in urban pediatric clinics of an inner-city county hospital system with or without an ASD screening module built into an existing decision support software system. Statistical analyses were conducted from February 6, 2017, to June 1, 2018. Interventions: Four clinics were matched in pairs based on patient volume and race/ethnicity, then randomized within pairs. Decision support with the Child Health Improvement Through Computer Automation system (CHICA) was integrated with workflow and with the electronic health record in intervention clinics. Main Outcomes and Measures: The main outcome was screening rates among children aged 18 to 24 months. Because the intervention was discontinued among children aged 18 months at the request of the participating clinics, only results for those aged 24 months were collected and analyzed. Rates of positive screening results, clinicians' response rates to screening results in the computer system, and new cases of ASD identified were also measured. Main results were controlled for race/ethnicity and intracluster correlation. Results: Two clinics were randomized to receive the intervention, and 2 served as controls. Records from 274 children (101 girls, 162 boys, and 11 missing information on sex; age range, 23-30 months) were reviewed (138 in the intervention clinics and 136 in the control clinics). Of 263 children, 242 (92.0%) were enrolled in Medicaid, 138 (52.5%) were African American, and 96 (36.5%) were Hispanic. Screening rates in the intervention clinics increased from 0% (95% CI, 0%-5.5%) at baseline to 68.4% (13 of 19) (95% CI, 43.4%-87.4%) in 6 months and to 100% (18 of 18) (95% CI, 81.5%-100%) in 24 months. Control clinics had no significant increase in screening rates (baseline, 7 of 64 children [10.9%]; 6-24 months after the intervention, 11 of 72 children [15.3%]; P = .46). Screening results were positive for 265 of 980 children (27.0%) screened by CHICA during the study period. Among the 265 patients with positive screening results, physicians indicated any response in CHICA in 151 (57.0%). Two children in the intervention group received a new diagnosis of ASD within the time frame of the study. Conclusions and Relevance: The findings suggest that computer automation, when integrated with clinical workflow and the electronic health record, increases screening of children for ASD, but follow-up by physicians is still flawed. Automation of the subsequent workup is still needed. Trial Registration: ClinicalTrials.gov identifier: NCT01612897.

Assessment of the Effects of Pediatric Attention Deficit Hyperactivity Disorder on Family Stress and Well-Being: Development of the IMPACT 1.0 Scale.

Medications may lessen core symptoms of attention deficit hyperactivity disorder (ADHD), yet families continue to report stress and have a low quality of life. Primary care providers manage almost half of all children with ADHD but do not have a brief measure to assess ADHD impacts on family in the context of everyday family life. The IMPACT (Impact Measure of Parenting-Related ADHD Challenges and Treatment) 1.0 Scale was codeveloped with input from parent advisors and administered to 79 parents of children with ADHD. Exploratory factor analysis, correlations with validated instruments, and test-retest reliability were examined. Exploratory factor analysis resulted in 4 subscales (Misbehavior, Siblings, Time, School), which demonstrated moderate to high test-retest reliability. Scale domains were related to severity and change in ADHD symptoms. Significant correlations were found between IMPACT scores, adaptive functioning in the home, and ADHD-related quality of life. The IMPACT 1.0 Scale provides a novel, reliable, and valid method to assess family impact of ADHD.

Attention Deficit-Hyperactivity Disorder Group Visits Improve Parental Emotional Health and Perceptions of Child Behavior.

OBJECTIVE: Group visits (GVs) are a promising intervention, but more work is needed to establish intervention effects. The objective was to evaluate the effectiveness of GVs and compare them with individual visits (INDs) for chronic care of attention deficit-hyperactivity disorder (ADHD). METHODS: Caregivers and children (6-12 yrs) with ADHD participated in a comparative effectiveness trial from April 2014 to June 2015. Families were offered ADHD follow-up every 3 months as GVs versus INDs. Outcomes included ADHD core symptoms, child functioning at home, quality of life, perceived social support, and ADHD-related parenting challenges. Change scores from baseline to the study end were examined for parent and child outcomes within and between treatment conditions. RESULTS: Ninety-one children from 84 families participated. Eighteen families withdrew or were lost to follow-up. GV families attended more visits over 12 months, had significant improvement in mean parental emotional health (p = 0.04), and had a greater decrease in challenges related to misbehavior compared with IND families (p < 0.03). GV families experienced significant improvements in child functioning at home (p = 0.01) and reported more time for themselves, other siblings, and routine household activities (p < 0.01). Children receiving care as INDs reported a significant drop in mean emotional health. There were no significant changes in other outcomes. CONCLUSION: Families participating in GVs experienced multiple improvements related to family functioning and attended more follow-up visits. Findings confirm the effectiveness of the GV intervention in delivering critical parenting support as part of ADHD management.

Parent-centered communication at time of pediatric cancer diagnosis: A systematic review.

There are limited data focused on parental communication needs surrounding the time when a child is diagnosed with cancer. In this systematic review, we synthesized current literature on communication preferences of parents at the time of their child's diagnosis of cancer. We identified 16 studies that yielded 4 major themes parents recognized as important: communication style, content, logistics, and healthcare team. We further identified several concepts that inform parent-centered communication practice. The ensuing pediatric oncology parent-centered communication concept map is meant as a tool to expand providers' communication experience at the time of a new cancer diagnosis.

A six-year repeated evaluation of computerized clinical decision support system user acceptability.

OBJECTIVE: Long-term acceptability among computerized clinical decision support system (CDSS) users in pediatrics is unknown. We examine user acceptance patterns over six years of our continuous computerized CDSS integration and updates. MATERIALS AND METHODS: Users of Child Health Improvement through Computer Automation (CHICA), a CDSS integrated into clinical workflows and used in several urban pediatric community clinics, completed annual surveys including 11 questions covering user acceptability. We compared responses across years within a single healthcare system and between two healthcare systems. We used logistic regression to assess the odds of a favorable response to each question by survey year, clinic role, part-time status, and frequency of CHICA use. RESULTS: Data came from 380 completed surveys between 2011 and 2016. Responses were significantly more favorable for all but one measure by 2016 (OR range 2.90-12.17, all p < 0.01). Increasing system maturity was associated with improved perceived function of CHICA (OR range 4.24-7.58, p < 0.03). User familiarity was positively associated with perceived CDSS function (OR range 3.44-8.17, p < 0.05) and usability (OR range 9.71-15.89, p < 0.01) opinions. CONCLUSION: We present a long-term, repeated follow-up of user acceptability of a CDSS. Favorable opinions of the CDSS were more likely in frequent users, physicians and advanced practitioners, and full-time workers. CHICA acceptability increased as it matured and users become more familiar with it. System quality improvement, user support, and patience are important in achieving wide-ranging, sustainable acceptance of CDSS.

A Workforce Survey on Developmental-Behavioral Pediatrics.

BACKGROUND AND OBJECTIVES: Developmental-behavioral conditions are common, affecting ∼15% of US children. The prevalence and complexity of these conditions are increasing despite long wait times and a limited pipeline of new providers. We surveyed a convenience sample of the developmental-behavioral pediatric (DBP) workforce to determine current practices, workforce trends, and future needs. METHODS: An electronic survey was e-mailed to 1568 members of the American Academy of Pediatrics Section on Developmental and Behavioral Pediatrics and Council on Children with Disabilities, the Society for Developmental and Behavioral Pediatrics, and the National Association of Pediatric Nurse Practitioners Developmental and Behavioral Mental Health Special Interest Group. RESULTS: The response rate was 48%. There were 411 fellowship-trained physicians, 147 nonfellowship-trained physicians, and 125 nurse practitioners; 61% were women, 79% were white, and 5% were Hispanic. Physicians had a mean of 29 years since medical school graduation, and one-third planned to retire in 3 to 5 years. Nurse practitioners were earlier in their careers. Respondents reported long wait times for new appointments, clinician burnout, increased patient complexity and up to 50% additional time spent per visit in nonreimbursed clinical-care activities. Female subspecialists spent more time per visit in billable and nonbillable components of clinical care. CONCLUSIONS: The DBP workforce struggles to meet current service demands, with long waits for appointments, increased complexity, and high volumes of nonreimbursed care. Sex-based practice differences must be considered in future planning. The viability of the DBP subspecialty requires strategies to maintain and expand the workforce, improve clinical efficiency, and prevent burnout.

Follow-up of Mothers with Suspected Postpartum Depression from Pediatrics Clinics.

PURPOSE: Pediatric providers are increasingly screening for postpartum depression (PD), yet, it is unknown how often mothers comply with recommendations to seek treatment. The objectives were to describe the rate at which mothers with suspected PD seek treatment and explore factors that predict help-seeking behavior. DESIGN AND METHODS: Mothers were recruited from four pediatric clinics after identification using the Child Health Improvement through Computer Automation (CHICA) system. Mothers with a positive screen were invited to participate in a telephone interview between January 2012 and December 2014. Mothers reported if they sought treatment or called a community resource. RESULTS: 73 of 133 eligible mothers participated (55% response rate). Fifty women recalled a recommendation to seek help. Only 43.8% (32/73) made a follow-up appointment with an adult provider and even fewer kept the appointment. CONCLUSION: A majority of mothers suspected of having PD recalled a referral for further intervention; yet, less than half took action. Further investigation of barriers of help-seeking behavior is warranted.

Making the Legal and Ethical Case for Universal Screening for Postpartum Mood and Anxiety Disorders in Pediatric Primary Care.

Postpartum depression (PPD), part of a larger spectrum of perinatal mood and anxiety disorders, affects up to 15% of women following the birth of an infant. Fathers may also be affected. PPD not only affects caregivers, but also impacts infants through mechanisms such as inadequate caregiver-infant interactions and non-adherence to safety practices. The negative impact on infants may extend across the life course through adulthood. This article seeks to move the needle toward universal screening for PPD using validated tools in pediatric primary care settings for new caregivers by making the legal and ethical case for this course of action in a manner that is both compelling and accessible for clinicians. Toward this end, we summarize current literature as it applies to provider responsibilities, liabilities and perspectives; and caregiver autonomy, confidentiality, and privacy. We then assess utility by balancing the benefits and burdens of this approach to practices, providers, and caregivers; and take the analysis one step further by looking across multiple populations to assess distributive justice. We conclude that there is a strong ethical case for universal screening for PPD in pediatric primary care settings using validated tools when informed consent can be obtained and appropriate follow-up services are available and accessible. Clinical considerations, practical resources, and areas ripe for future research are also addressed.

Acceptability of Group Visits for Attention-Deficit Hyperactivity Disorder in Pediatric Clinics.

OBJECTIVE: Children with attention-deficit hyperactivity disorder (ADHD) have ongoing needs that impair home and school functioning. Group visit models are a promising way to deliver timely parenting support but family and provider acceptance has not previously been examined. The objective was to describe the acceptability of ADHD group visits in busy pediatric clinics based on caregivers, child participants and facilitators. METHODS: Data were analyzed from school-age children and caregivers who participated in one of two 12-month long randomized controlled studies of the ADHD group visit model from 2012 to 2013 or 2014 to 2015. Feedback was obtained using semi-structured questions at each study end, by telephone or at the last group visit. Sessions were audio-recorded, transcribed and themes were extracted by participant type. RESULTS: A total of 34 caregivers, 41 children and 9 facilitators offered feedback. Caregivers enjoyed the "support group" aspect and learning new things from others. Caregivers reported improved understanding of ADHD and positive changes in the relationship with their child. Children were able to recall specific skills learned including how skills helped at home or school. Facilitators acknowledged systems-level challenges to offering group visits but felt the group format helped increase understanding of families' needs, improved overall care, and provided innovative ways to engage with families. CONCLUSION: The majority of comments from families and facilitators highlighted a variety of benefits of the use of a group visit model for ADHD chronic care. Despite systems-level barriers to implementation, families and facilitators felt the benefits outweighed the challenges.

Racial/Ethnic Differences in the Prevalence of Anxiety Using the Vanderbilt ADHD Scale in a Diverse Community Outpatient Setting.

OBJECTIVE: Pediatric anxiety is prevalent but frequently underdiagnosed compared with other behavioral conditions in primary care practice. Pediatricians routinely screen for attention-deficit hyperactivity disorder using the Vanderbilt Rating Scale, which includes a short screen for anxiety. We sought to examine the prevalence of potential anxiety among patients whose parents originally had concerns of disruptive behavior in a diverse setting and examine differences in anxiety across ethnic groups using the Vanderbilt ADHD Diagnostic Rating Scale (VADRS). METHOD: This was a cross-sectional analysis of medical records data of children between the ages of 5 to 12 years whose parents had concerns of disruptive behavior and received primary care from May 25, 2010, to January 31, 2014 at 2 pediatric community health clinics in Indianapolis. RESULTS: Sixteen percent of children whose parents had concerns for disruptive behavior screened positive for anxiety based on the VADRS screen. Hispanic parents were less likely to report symptoms of anxiety (Spanish speaking: adjusted odds ratio (AOR) 0.4, 95% confidence interval (CI), 0.2-0.8; English speaking: AOR 0.3, 95% CI, 0.1-0.9) compared with white and black families. CONCLUSION: Anxiety is detected at a lower rate among Hispanic pediatric patients using the VADRS. This may suggest differences in the performance of the VADRS among Spanish-speaking families.

Parent Health Literacy, Depression, and Risk for Pediatric Injury.

BACKGROUND: Population-wide research on the impact of parent health literacy to children's health outcomes is limited. We assessed the relationship of low parent health literacy to a range of pediatric health risks within a large cohort of primary care patients. METHODS: Data were from 17 845 English- and Spanish-speaking parents of children aged ≤7 years presenting for well-child care. We used a 3-item screener to measure health literacy. Outcomes included secondhand smoke exposure, asthma treatment nonadherence, parent depression, child-rearing practices, injury prevention, and parent first-aid knowledge. We summarized study variables with descriptive statistics and then performed multivariable logistic regression to identify associations between low parent literacy and our dependent measures. RESULTS: Mean child age was 4.8 years (SD 3.7); 36.5% of parent respondents had low health literacy. In models adjusted for child gender, race/ethnicity, insurance, age, and parent language preference, low parent health literacy was related to a range of pediatric health risks, including parent depression (adjusted odds ratio [AOR] 1.32; 95% confidence interval 1.18-1.48), firearm access (AOR 1.68; 1.49-1.89), not having a working smoke detector (AOR 3.54; 2.74-4.58), and lack of first-aid knowledge about choking (AOR 1.67; 1.44-1.93) and burns (AOR 1.45; 1.29-1.63). Children of parents with low health literacy were also more likely to watch >2 hours of television per day (AOR 1.27; 1.17-1.36). CONCLUSIONS: Low parent health literacy is independently and significantly related to parent depression, child television viewing, and at-risk family behaviors associated with child injury. Use of low-literacy approaches to health-behavior interventions may be essential to address common child morbidities.

Experience with decision support system and comfort with topic predict clinicians' responses to alerts and reminders.

OBJECTIVE: Clinicians at our institution typically respond to about half of the prompts they are given by the clinic's computer decision support system (CDSS). We sought to examine factors associated with clinician response to CDSS prompts as part of a larger, ongoing quality improvement effort to optimize CDSS use. METHODS: We examined patient, prompt, and clinician characteristics associated with clinician response to decision support prompts from the Child Health Improvement through Computer Automation (CHICA) system. We asked pediatricians who were nonusers of CHICA to rate decision support topics as "easy" or "not easy" to discuss with patients and their guardians. We analyzed these ratings and data, from July 1, 2009 to January 29, 2013, utilizing a hierarchical regression model, to determine whether factors such as comfort with the prompt topic and the length of the user's experience with CHICA contribute to user response rates. RESULTS: We examined 414 653 prompts from 22 260 patients. The length of time a clinician had been using CHICA was associated with an increase in their prompt response rate. Clinicians were more likely to respond to topics rated as "easy" to discuss. The position of the prompt on the page, clinician gender, and the patient's age, race/ethnicity, and preferred language were also predictive of prompt response rate. CONCLUSION: This study highlights several factors associated with clinician prompt response rates that could be generalized to other health information technology applications, including the clinician's length of exposure to the CDSS, the prompt's position on the page, and the clinician's comfort with the prompt topic. Incorporating continuous quality improvement efforts when designing and implementing health information technology may ensure that its use is optimized.

The Relationship Among Caregiver Depressive Symptoms, Parenting Behavior, and Family-Centered Care.

BACKGROUND: Parental depression has been associated with adverse child outcomes. However, the specific parenting behaviors that may result in such child outcomes and the effect of family-centered care (FCC) on positive parenting behavior of depressed parents has not previously been examined. METHODS: Data from the National Survey of Early Childhood Health was used (n = 2,068). Groups were stratified by the presence of parental depression and compared with regard to demographics and the mean number of specific positive parenting behaviors. Generalized linear models were developed based on testing whether individuals performed more or less than the median number of positive behaviors. Lastly, we tested whether depression independently predicted each outcome after adjustment for FCC, coping, social support, and ethnicity to evaluate if depression independently predicted each outcome after adjustment. RESULTS: No difference was found in demographic variables between parents who were depressed and not depressed. Parents who were not depressed performed significantly more routines (p = .036); reported coping better with parenting (p < .001); performed significantly less punitive behaviors (p = .022); and needed/had less social support (p = .002) compared with parents who were depressed. Individual items and scale scores were associated in the expected directions. FCC was independently associated with study variables but did not moderate the effect of depression. CONCLUSIONS: These data identify specific parenting behaviors that differ between parents who report depressive symptoms compared with parents who do not have depressive symptoms. More targeted interventions coordinated through a medical home are needed for parents with depressive symptoms to reduce the child health disparities often associated with parental depression.

Group Visits to Improve Pediatric Attention-Deficit Hyperactivity Disorder Chronic Care Management.

OBJECTIVE: Children with attention-deficit hyperactivity disorder (ADHD) may experience continued impairment at home and school even after medication initiation. Group visits offer a way for pediatricians to provide more time to address ongoing needs. A pilot study was undertaken to examine whether a group visit model improved ADHD management in the pediatric medical home. METHODS: Parents and children aged 6 to 18 years with ADHD were recruited and randomized to group visits or a usual care control. Data included attendance at ADHD follow-up visits, parent-rated ADHD symptoms, adaptive functioning, and quality of life. Longitudinal linear mixed models (continuous variables) and generalized linear mixed models (binary outcomes) were used to compare groups. In our statistical models, child and family were random effects; study assignment was a fixed effect. RESULTS: Twenty families representing 29 children participated (intervention: 9 parents/13 children and control: 11 parents/16 children). Aside from race, baseline characteristics of participants were similar. None of the intervention families missed the expected 5 ADHD follow-up visits over 1 year; control families missed 1 or more visits over the same period. Intervention families reported an improved level of adaptive functioning at 12 months compared with control (mean severity score: 3.7 vs 4.4, p = .003). All families reported greater limitations and poorer quality of life compared with national norms. CONCLUSION: Group visits in the pediatric medical home can improve adherence, and preliminary results show a variety of improvements for the family.

Secondhand smoke exposure, parental depressive symptoms and preschool behavioral outcomes.

Little is known about the association of secondhand smoke (SHS) exposure and behavioral conditions among preschoolers. A cross-sectional analysis was used to examine billing and pharmacy claims from November 2004 to June 2012 linked to medical encounter-level data for 2,441 children from four pediatric community health clinics. Exposure to SHS was associated with attention deficit-hyperactivity disorder/ADHD and disruptive behavior disorder/DBD after adjusting for potential confounding factors. Assessment of exposure to SHS and parental depressive symptoms in early childhood may increase providers' ability to identify children at higher risk of behavioral issues and provide intervention at the earliest stages.