Browsing by Author "Downs, Stephen"
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Item Community Engagement of Adolescents in the Development of a Patient-Centered Outcomes Tool for Adolescents with a History of Hypospadias Repair(Elsevier, 2019) Chan, Katherine H.; Panoch, Janet; Carroll, Aaron; Downs, Stephen; Cain, Mark P.; Frankel, Richard; Cockrum, Brandon; Moore, Courtney; Wiehe, Sarah; Pediatrics, School of MedicineIntroduction Hypospadias may lead to long-term issues with urination, sexual function and psychosocial well-being. Limited evidence exists regarding the healthcare communication preferences of male adolescents regarding sensitive topics. Objective The purpose of this qualitative study was to explore the healthcare communication preferences of male adolescents regarding sensitive topics (e.g. urinary and sexual issues) and engage them in in the initial stages of development a patient-centered outcomes tool for adolescents with a history of hypospadias repair. Study Design A multi-disciplinary team with communication design expertise, pediatric urology experts, and health services researchers developed a self-reported toolkit for adolescent patients who had hypospadias repair as children. The toolkit featured short writing/diagramming exercises and scales to facilitate participant reflections about genital appearance, urination, sexual function and psychosocial well-being. We recruited students from two local high schools for two focus groups to obtain feedback about the usability/acceptability of the toolkit’s appearance/content. We inquired about language preferences and preferred format and/or setting for sharing sensitive information with researchers. The focus groups were audio recorded, professionally transcribed, checked for accuracy and analyzed by two coders using qualitative content analysis. Major themes and subthemes were identified and representative quotes were selected. Results We conducted two focus groups in January 2018 with 33 participants, ages 14-18. Participants preferred language that would make patients feel comfortable as well as serious, clinical language rather than slang terms/sexual humor (Extended Summary Table). They recommended avoidance of statements implying that something is wrong with a patient or statements that would pressure the patient into providing answers. They suggested fill-in-the-blank and open-ended responses to encourage freedom of expression and colorful graphics to de-emphasize the test-like appearance of the toolkit. Most participants preferred a toolkit format to a one-on-one interview to discuss sensitive topics such as urinary or sexual issues. Participants would prefer either a male interviewer or would like to have a choice of interviewer gender for individual qualitative interviews, and they recommended a focus group leader with a history of hypospadias repair. Discussion This study provides a rich description of a group of male high school students’ experiences with healthcare providers and researchers. Its qualitative design limits generalizability and our findings may not be similar to adolescents with a history of hypospadias repair. Conclusion We used focus group feedback on the toolkit prototype to refine the tool for use in a future study of adolescents with history of hypospadias repair.Item Consulting “Dr. YouTube”: an objective evaluation of hypospadias videos on a popular video-sharing website(Elsevier, 2020-02-16) Salama, Amr; Panoch, Janet; Bandali, Elhaam; Carroll, Aaron; Wiehe, Sarah; Downs, Stephen; Cain, Mark P.; Frankel, Richard; Chan, Katherine H.; Urology, School of MedicineIntroduction: 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.Item Decision Support from Local Data: Creating Adaptive Order Menus from Past Clinician Behavior(Elsevier, 2014-04) Klann, Jeffrey G.; Szolovits, Peter; Downs, Stephen; Schadow, Gunther; Department of Pediatrics, IU School of MedicineObjective Reducing care variability through guidelines has significantly benefited patients. Nonetheless, guideline-based clinical decision support (CDS) systems are not widely implemented or used, are frequently out-of-date, and cannot address complex care for which guidelines do not exist. Here, we develop and evaluate a complementary approach - using Bayesian network (BN) learning to generate adaptive, context-specific treatment menus based on local order-entry data. These menus can be used as a draft for expert review, in order to minimize development time for local decision support content. This is in keeping with the vision outlined in the US Health Information Technology Strategic Plan, which describes a healthcare system that learns from itself. Materials and Methods We used the Greedy Equivalence Search algorithm to learn four 50-node domain-specific BNs from 11,344 encounters: abdominal pain in the emergency department, inpatient pregnancy, hypertension in the urgent visit clinic, and altered mental state in the intensive care unit. We developed a system to produce situation-specific, rank-ordered treatment menus from these networks. We evaluated this system with a hospital-simulation methodology and computed Area Under the Receiver-Operator Curve (AUC) and average menu position at time of selection. We also compared this system with a similar association-rule-mining approach. Results A short order menu on average contained the next order (weighted average length 3.91–5.83 items). Overall predictive ability was good: average AUC above 0.9 for 25% of order types and overall average AUC .714–.844 (depending on domain). However, AUC had high variance (.50–.99). Higher AUC correlated with tighter clusters and more connections in the graphs, indicating importance of appropriate contextual data. Comparison with an association rule mining approach showed similar performance for only the most common orders with dramatic divergence as orders are less frequent. Discussion and Conclusion This study demonstrates that local clinical knowledge can be extracted from treatment data for decision support. This approach is appealing because: it reflects local standards; it uses data already being captured; and it produces human-readable treatment-diagnosis networks that could be curated by a human expert to reduce workload in developing localized CDS content. The BN methodology captured transitive associations and co-varying relationships, which existing approaches do not. It also performs better as orders become less frequent and require more context. This system is a step forward in harnessing local, empirical data to enhance decision support.Item Parental Perspectives on Decision-making about Hypospadias Surgery(Elsevier, 2019) Chan, Katherine H.; Panoch, Janet; Carroll, Aaron; Wiehe, Sarah; Downs, Stephen; Cain, Mark P.; Frankel, Richard; Medicine, School of MedicineIntroduction Many parents who choose hypospadias repair for their son experience decisional conflict and regret. The utilization of a shared decision-making process may address the issue of decisional conflict and regret in hypospadias repair by engaging both parents and physicians in decision-making. Objective The objective of this study was to develop a theoretical framework of the parental decision-making process about hypospadias surgery to inform the development of a decision aid. Study Design We conducted semi-structured interviews with parents of children with hypospadias to explore their role as proxy-decision-makers, inquiring about their emotions/concerns, informational needs and external/internal influences. We conducted interviews until no new themes were identified, analyzing them iteratively using open, axial and selective coding. The iterative approach entails a cyclical process of conducting interviews and analyzing transcripts while the data collection process is ongoing. This allows the researcher to make adjustments to the interview guide as necessary based on preliminary data analysis in order to explore themes that emerge from early interviews with parents. We used grounded theory methods to develop an explanation of the surgical decision-making process. Results We interviewed 16 mothers and 1 father of 7 preoperative and 9 postoperative patients (n=16) with distal (8) and proximal (8) meatal locations. We identified four stages of the surgical decision-making process: 1) processing the diagnosis, 2) synthesizing information, 3) processing emotions and concerns and 4) finalizing the decision (Extended Summary Figure). We identified core concepts in each stage of the decision-making process. Primary concerns included anxiety/fear about the child not waking up from anesthesia and their inability to be present in the operating room. Parents incorporated information from the Internet, medical providers and their social network as they sought to relieve confusion and anxiety while building trust/confidence in their child’s surgeon. Discussion The findings of this study contribute to our understanding of decision-making about hypospadias surgery as a complex and multi-faceted process. The overall small sample size is typical and expected for qualitative research studies. The primary limitation of the study, however, is the underrepresentation of fathers, minorities and same-sex couples. Conclusions This study provides an initial framework of the parental decision-making process for hypospadias surgery that will inform the development of a decision aid. In future stages of decision aid development, we will focus on recruitment of fathers, minorities and same-sex couples in order to enrich the perspectives of our work.Item Parental Perspectives on Decision-making about Hypospadias Surgery(Elsevier, 2019-10-01) Chan, Katherine H.; Panoch, Janet; Carroll, Aaron; Wiehe, Sarah; Downs, Stephen; Cain, Mark P.; Frankel, Richard; Urology, School of MedicineIntroduction: Many parents who choose hypospadias repair for their son experience decisional conflict and regret. The utilization of a shared decision-making process may address the issue of decisional conflict and regret in hypospadias repair by engaging both parents and physicians in decision-making. Objective: The objective of this study was to develop a theoretical framework of the parental decision-making process about hypospadias surgery to inform the development of a decision aid. Study Design: We conducted semi-structured interviews with parents of children with hypospadias to explore their role as proxy-decision-makers, inquiring about their emotions/concerns, informational needs and external/internal influences. We conducted interviews until no new themes were identified, analyzing them iteratively using open, axial and selective coding. The iterative approach entails a cyclical process of conducting interviews and analyzing transcripts while the data collection process is ongoing. This allows the researcher to make adjustments to the interview guide as necessary based on preliminary data analysis in order to explore themes that emerge from early interviews with parents. We used grounded theory methods to develop an explanation of the surgical decision-making process. Results: We interviewed 16 mothers and 1 father of 7 preoperative and 9 postoperative patients (n=16) with distal (8) and proximal (8) meatal locations. We identified four stages of the surgical decision-making process: 1) processing the diagnosis, 2) synthesizing information, 3) processing emotions and concerns and 4) finalizing the decision (Extended Summary Figure). We identified core concepts in each stage of the decision-making process. Primary concerns included anxiety/fear about the child not waking up from anesthesia and their inability to be present in the operating room. Parents incorporated information from the Internet, medical providers and their social network as they sought to relieve confusion and anxiety while building trust/confidence in their child’s surgeon. Discussion: The findings of this study contribute to our understanding of decision-making about hypospadias surgery as a complex and multi-faceted process. The overall small sample size is typical and expected for qualitative research studies. The primary limitation of the study, however, is the underrepresentation of fathers, minorities and same-sex couples. Conclusions: This study provides an initial framework of the parental decision-making process for hypospadias surgery that will inform the development of a decision aid. In future stages of decision aid development, we will focus on recruitment of fathers, minorities and same-sex couples in order to enrich the perspectives of our work.Item Quality Improvement Learning Collaborative Improves Timely Newborn Follow-Up Appointments(Elsevier, 2019-12) Scott, Emily; Downs, Stephen; Pottenger, Amy; Saysana, Michele; Pediatrics, School of MedicineBackground American Academy of Pediatrics guidelines indicate that newborns should follow up with their primary care providers within three days of discharge from the newborn nursery. Many barriers exist to achieving timely follow-up, with potential implications on a newborn’s health. The goal of this project was to improve rates of timely newborn follow-up through a nine-month quality improvement learning collaborative (QILC). Timely newborn follow-up was defined as an appointment scheduled within three days of newborn discharge. Methods Both inpatient hospitalist and outpatient pediatric practices were eligible to participate. Inpatient and outpatient practices aimed to have 75% of newborns scheduled appropriately by six months into the project. In addition, outpatient practices aimed to have 60% of newborns seen appropriately by their provider. All practices aimed to have their progress sustained at conclusion of the QILC. Practices submitted data at baseline and nine subsequent phases. Monthly webinars featured a quality improvement didactic, data review, and discussion of practices’ changes, successes, and challenges. Results Eleven practices and 24 physicians participated in the QILC. Aggregate data from the practices showed continual improvement in all measured newborn scheduling metrics throughout the nine-month learning collaborative, with sustainment of progress over the last three months of the QILC. Conclusion A QILC is successful for increasing timely newborn follow-up for both the newborn hospitalist and outpatient pediatrician. Pediatric providers can learn from others’ strategies and successes to incorporate meaningful changes in their practice.Item Unexplained Practice Variation in Primary Care Providers' Concern for Pediatric Obstructive Sleep Apnea(APA, 2018) Honaker, Sarah; Dugan, Tamara; Daftary, Ameet; Davis, Stephanie; Saha, Chandan; Baye, Fitsum; Freeman, Emily; Downs, Stephen; Pediatrics, School of MedicineObjective To examine primary care provider (PCP) screening practice for obstructive sleep apnea (OSA) and predictive factors for screening habits. A secondary objective was to describe the polysomnography (PSG) completion proportion and outcome. We hypothesized that both provider and child health factors would predict PCP suspicion of OSA. Methods A computer decision support system that automated screening for snoring was implemented in five urban primary care clinics in Indianapolis, Indiana. We studied 1086 snoring children between 1 and 11 years seen by 26 PCPs. We used logistic regression to examine the association between PCP suspicion of OSA and child demographics, child health characteristics, provider characteristics, and clinic site. Results PCPs suspected OSA in 20% of snoring children. Factors predicting PCP concern for OSA included clinic site (p < .01; OR=0.13), Spanish language (p < .01; OR=0.53), provider training (p=.01; OR=10.19), number of training years (p=.01; OR=4.26) and child age (p<.01), with the youngest children least likely to elicit PCP concern for OSA (OR=0.20). No patient health factors (e.g., obesity) were significantly predictive. Proportions of OSA suspicion were variable between clinic sites (range 6% to 28%) and between specific providers (range 0% to 63%). Of children referred for PSG (n=100), 61% completed the study. Of these, 67% had OSA. Conclusions Results suggest unexplained small area practice variation in PCP concern for OSA amongst snoring children. It is likely that many children at-risk for OSA remain unidentified. An important next step is to evaluate interventions to support PCPs in evidence-based OSA identification.