Sarah Wiehe
Permanent URI for this collection
Engaging the Community to Inform Patient-Centered Outcomes Research
Despite well-known associations between where a person lives and his/her health, few patient-centered approaches have been used to develop and implement place-based health interventions. For the first time in the United States, Avondale Meadows, a Purpose Built Community in Indianapolis, is incorporating health as part of its community development strategy.
Avondale Meadows is an 800-unit, mixed income housing development with a key emphasis on housing, education, and health. Now, nearly all units leased and health-related amenities, including a Health and Wellness Center, are about to be implemented. Dr. Wiehe, with a team of academic and community partners, have engaged all stakeholders, including current and future residents, to discuss how to improve the community’s health. Through mixed-methods and participatory design, the team has elicited and engaged residents to develop health-promoting interventions in their community. These ideas were presented back to the larger community for validation and further resident engagement. Now, as the community members are incorporated into the ‘research team,’ they will work together to translate their ideas into action.
Dr. Wiehe’s work to engage the community in ways to improve their health is another example of how IUPUI’s faculty members are TRANSLATING their RESEARCH INTO PRACTICE.
Browse
Recent Submissions
Item Provider perspectives on shared decision-making regarding hypospadias surgery(Elsevier, 2020-06) Chan, Katherine H.; Misseri, Rosalia; Cain, Mark P.; Whittam, Benjamin; Szymanski, Konrad; Kaefer, Martin; Rink, Richard; Cockrum, Brandon; Moore, Courtney; Wiehe, Sarah; Urology, School of MedicineIntroduction: Many parents experience decisional conflict and decisional regret around hypospadias surgery. The utilization of a shared decision-making (SDM) process may mitigate these issues, however addressing the principal components of the SDM process is a complex task that requires the investment of providers. Objective: The purpose of this study was to facilitate a discussion about SDM anchored on hypospadias with pediatric urology and general pediatric providers to explore perspectives, clinical applications and barriers to adopting SDM in clinical practice. Study design: We conducted two focus groups in order to engage pediatric urology and general pediatric providers in guided discussions about SDM anchored on hypospadias. All activities were audio recorded and professionally transcribed. The transcripts were analyzed by three coders using directed qualitative content analysis techniques to identify themes and relationships between themes to inform the development of an affinity diagram (Extended Summary Figure). Results: Two focus groups were held; one with seven pediatric urology providers in November 2018 and one with ten general pediatric providers in January 2019 (median age 51 years, 88.2% Caucasian, 58.8% female, 70.6% physicians and 29.4% nurse practitioners). Both groups identified some of the key components of SDM including engaging families in decision-making, informing them about treatment options and clarifying values/preferences (Extended Summary Figure). They thought that SDM was useful for discussing preference-sensitive conditions (e.g. hypospadias) and addressing parental compliance. General pediatric providers also suggested that SDM helped them avoid unnecessary referrals to specialists. Both groups identified parental, provider and systemic barriers to the adoption of SDM: a) desire for paternalism, b) misperceptions about medical evidence, c) completion of parental decision-making prior to the clinical visit, d) provider bias/lack of interest and e) time constraints/productivity pressures. Discussion: Providers who care for hypospadias patients are knowledgeable about SDM and its potential clinical applications. They identified several potentially modifiable barriers to the adoption of a SDM process about hypospadias surgery in a pediatric clinical setting. Conclusions: Based on feedback from providers, we plan to implement a hypospadias decision aid early in the parental decision-making process about hypospadias such as in the postpartum unit and at well-child visits in the newborn period and provide a provider training session about SDM to address the identified knowledge gaps.Item User-centered development of a hypospadias decision aid prototype(Elsevier, 2020-10) Chan, Katherine H.; Misseri, Rosalia; Carroll, Aaron; Frankel, Richard; Moore, Courtney M.; Cockrum, Brandon; Wiehe, Sarah E.; Urology, School of MedicineIntroduction: Many parents who choose hypospadias repair for their sons experience decisional conflict (DC) and decisional regret (DR). We previously found that parental decision-making about hypospadias surgery is a complex process characterized by cyclic information-seeking to alleviate anxiety and confusion. Objective: The objective of this study was to engage parents of hypospadias patients and pediatric providers in the co-design of a decision aid (DA) prototype to facilitate shared decision-making about hypospadias surgery and address DC and DR. Methods: From August 2018 to January 2019, we conducted three co-design workshops with parents of hypospadias patients, pediatric urology and general pediatric providers to discuss their recommendations for a DA prototype. Activities were audio recorded and professionally transcribed. Transcripts and worksheets were analyzed by six coders using qualitative analysis to identify key aspects of a hypospadias DA desired by stakeholders. We conducted a collaborative design and prototyping session to establish key features and requirements, created a content map visualizing this work, and then developed a DA prototype. Results: Parent participants included 6 mothers and 4 fathers: 8 Caucasian, 2 African-American; median age 31 years. Providers included pediatric urology (n = 7) and general pediatric providers (n = 10): median age 47.5 years, 83.3% Caucasian, 58.3% male, 58.3% MD's and 41.7% nurse practitioners. Participants created user-friendly, interactive DA prototypes with "24/7" availability that had three key functions: 1) provide accurate, customizable, educational content, 2) connect parents with each other, and 3) engage them in a decision-making activity. The prototype consisted of five modules (Extended Summary Figure). "Hypospadias Basics" includes epidemiology and a hypospadias severity scale. "Surgery Basics" includes goals, illustrated steps, and pros/cons of surgery. "Testimonials" includes videos of parents and adolescents discussing their experiences. "Help me Decide" includes a decisional conflict scale and a decision-making activity (i.e. values clarification method). "Frequently Asked Questions" covers general hypospadias information, perioperative expectations and a review of postoperative care. Discussion: To our knowledge, this is the first DA prototype developed for a pediatric urology condition using a human-centered design approach to engage many key stakeholders in the development process. One limitation of this study is the small population sampled, which limits generalizability and means that our findings may not reflect the views of all parents or pediatric providers involved in hypospadias decision-making. Conclusions: We created a parent-centered hypospadias DA prototype that provides decision support in an online, interactive format. Future directions include further testing with usability experts, providers and parents.Item Pharmacologic Therapy Among Opioid-Exposed Infants: Disparities By Race(Wiley, 2020-08) Campbell, A.; Scott, E.; Gharbi, S.; Wiehe, Sarah; Medicine, School of MedicineResearch Objective: The incidence of neonatal abstinence syndrome (NAS), a condition associated with in utero exposure to opioids, has been increasing over time. Traditional treatment for NAS combines a formal assessment of symptoms called the Finnegan score and pharmacologic therapy with opioids for infants with scores above a set threshold. Previous research has established that black patients are less likely to receive pain medication relative to white patients. This study examines potential disparities in the receipt of pharmacologic therapy with opioids among infants with prenatal opioid exposure or a diagnosis of neonatal abstinence syndrome among black and white infants. Study Design: This is a prospective cohort design utilizing electronic health record data. Chi‐square and logistic regression models assessing the relationship between pharmacotherapy and race were adjusted for insurance status, gender, maximum Finnegan score received, year of treatment, and facility. Population Studied: A sample of infants who were diagnosed with NAS (defined as ICD‐9: 779.5 or ICD‐10: 96.1) or opioid exposure (defined as ICD‐9: 760.73 or ICD‐10: P04.49) within a large metropolitan hospital system between the years 2008 and 2018 was obtained. Of those infants diagnosed with opioid exposure or NAS (N = 2518), 667 did not have a Finnegan score reported, resulting in a sample loss of 26%. The sample was then limited to black and white infants, dropping an additional 66 observations and resulting in a final sample of N = 1785. All data were taken from the infant’s electronic health records. Principal Findings: Chi‐square tests show that there is no significant difference in receipt of pharmacologic therapy with opioids by gender, or insurance status, but a significantly smaller proportion of black infants receive pharmacologic therapy (P < .001) relative to white infants. In the adjusted logistic model, black infants have significantly decreased odds (OR 0.42; [95% CI: 0.24, 0.73]) of receiving pharmacologic therapy relative to white infants. Conclusions: The health disparities literature has shown that the pain of black patients is undertreated compared with white patients. This study shows that disparities in the use of opioids start in the newborn period for pharmacologic treatment of neonatal abstinence syndrome. To our knowledge, this study is the first to show that the disparity in opioid prescriptions begins at infancy. Implications for Policy or Practice: New trends in NAS management involve an increased focus on nonpharmacologic therapy, such as breastfeeding, skin‐to‐skin contact, soothing, and swaddling. Some hospitals are moving away from the traditional Finnegan scoring and toward a simplified diagnostic model, which only prescribes pharmacologic opioid therapy when infants are not able to eat, sleep, or be consoled. It is important to monitor this transition in NAS management to ensure that treatment paths are determined by the severity of symptoms rather than race. Ensuring equal access to family‐centered NAS models where families are able to room in and provide optimal nonpharmacologic care to their infant should be prioritized. Increased education regarding potential racial biases in prescribing practices and efforts to standardize the care and treatment of opioid‐exposed infants are recommended.Item Working Group Recommendations for an Indiana University Research Data Commons(2022-06-30) Simon, Kosali; Dallis-Comentale, Diane; Fang, Shiaofen; Huang, Kun; Link, Matt; Maupome, Gerardo; Menczer, Filippo; Neal, Aaron; Perry, Brea; Plale, Beth; Raymond, Angie; Wiehe, SarahStarting on April 28, 2022, our Working Group set out to make recommendations for an Indiana University Research Data Commons (IU-RDCom), a strategy to identify and meet the growing needs associated with research data at our university. Developing a way to find, access, use and share research data is an iterative process that many peer universities are also currently pursuing. The process requires a university to identify researchers’ needs, catalog services that currently exist, understand how they can be leveraged along with new investments to meet these needs, and to establish a sustainable governance structure for developing and evolving the IU-RDCom. A competitive research data infrastructure will pay for itself in many ways through new external funding while it increases our scholarly, educational and service missions. The present report outlines our recommendations to VPR for practical steps IU should pursue in the near-, medium-, and long-term. In brief, these recommendations are to: 1) Establish a governing body to coordinate a research data commons. 2) Task the governing body with implementing and building on our recommendations. 3) Encourage IU leadership to communicate and promote IU’s strengths in research data. 4) Provide short-to-medium run financial support for building a foundation for the data commons. As stated in the charge to the Working Group (WG), the broad mission of the IU-RDCom is multifaceted: to serve as a university-wide resource for discovering, sharing, and accessing data resources across the IU community; to build on our world-class strengths in centralized cyberinfrastructure and other areas to present researchers with easier and more integrated pathways to our data resources; to enable richer training opportunities for students; and to empower IU to better serve local organizations, our state, and other partners. With exponential recent growth in the role of data in society and in scholarship, the need for universities to engage in strategic planning to strengthen research data infrastructure has been emphasized in new reports from the American Association of Universities (AAU), the Association of Public and Land-grant Universities (APLU), the National Science Foundation (NSF), and the National Academies of Science, Engineering, and Medicine (NASEM). NASEM committees are also presently guiding the vision for federal research data infrastructure for the 21st century for similar reasons as for academia. From communications with research data leadership at peer institutions over the course of our work, it is amply clear that other universities are also prioritizing central-level strategies to meet these growing research data needs in academia.Item Assessing Needs and Experiences of Preparing for Medical Emergencies Among Children with Cancer and Their Caregivers(Wolters Kluwer, 2020-11) Mueller, Emily L.; Cochrane, Anneli R.; Moore, Courtney M.; Jenkins, Kelli B.; Bauer, Nerissa S.; Wiehe, Sarah E.; Pediatrics, School of MedicineBackground: 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.Item Mental health outcomes from direct and indirect exposure to firearm violence: A cohort study of nonfatal shooting survivors and family members(Elsevier, 2022-06-30) Magee, Lauren A.; Aalsma, Matthew; Fortenberry, J. Dennis; Gharbi, Sami; Wiehe, SarahBackground: Firearm violence is a public health crisis in the US. Beyond the survivor, firearm violence also impacts family members and communities of firearm violence survivors. Despite the known health inequities that exist among nonfatal shooting survivors, little research has focused on the mental health needs of family members of nonfatal shootings survivors. Methods: Police and Medicaid claims data linked at the individual level between January 1, 2007 – December 31, 2016 in Indianapolis, Indiana. The Medicaid case number was used to identify nonfatal shooting survivors and family members. Differences in mental health prevalence and clinical care utilization were examined in the 12-months preceding and following an index nonfatal shooting for both survivors and family members. Results were stratified by age. Results: Mental health prevalence rates increased by nearly three percent for family members of nonfatal shooting survivors in the 12-months following a nonfatal shooting, compared to the preinjury period. Among youth with a new mental health diagnosis over half were family members and no differences were observed in mental health conditions between survivors and family members. Conclusions: Findings indicate a need for improved trauma informed services and connection to mental health care for both youth survivors and family members of nonfatal shootings.Item Diabetes Prevention in Adolescents: Co-design Study Using Human-Centered Design Methodologies(JMIR Publications, 2021-02-24) Pike, Julie M.; Moore, Courtney M.; Yazel, Lisa G.; O'Lynch, Dustin; Haberlin-Pittz, Kathryn M.; Wiehe, Sarah E.; Hannon, Tamara S.; Pediatrics, School of MedicineBackground: The rise in pediatric obesity and its accompanying condition, type 2 diabetes (T2D), is a serious public health concern. T2D in adolescents is associated with poor health outcomes and decreased life expectancy. Effective diabetes prevention strategies for high-risk adolescents and their families are urgently needed. Objective: The aim of this study was to co-design a diabetes prevention program for adolescents by using human-centered design methodologies. Methods: We partnered with at-risk adolescents, parents, and professionals with expertise in diabetes prevention or those working with adolescents to conduct a series of human-centered design research sessions to co-design a diabetes prevention intervention for youth and their families. In order to do so, we needed to (1) better understand environmental factors that inhibit/promote recommended lifestyle changes to decrease T2D risk, (2) elucidate desired program characteristics, and (3) explore improved activation in diabetes prevention programs. Results: Financial resources, limited access to healthy foods, safe places for physical activity, and competing priorities pose barriers to adopting lifestyle changes. Adolescents and their parents desire interactive, hands-on learning experiences that incorporate a sense of fun, play, and community in diabetes prevention programs. Conclusions: The findings of this study highlight important insights of 3 specific stakeholder groups regarding diabetes prevention and lifestyle changes. The findings of this study demonstrate that, with appropriate methods and facilitation, adolescents, parents, and professionals can be empowered to co-design diabetes prevention programs.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 Exposure to alcohol outlets, alcohol access, and alcohol consumption among adolescents(Elsevier, 2019-12-01) Morrison, Christopher N.; Byrnes, Hilary F.; Miller, Brenda A.; Wiehe, Sarah E.; Ponicki, William R.; Wiebe, Douglas J.; Pediatrics, School of MedicineBackground: Adolescents who live near more alcohol outlets tend to consume more alcohol, despite laws prohibiting alcohol purchases for people aged <21 years. We examined relationships between adolescents' exposure to alcohol outlets, the sources through which they access alcohol, and their alcohol consumption. Methods: Participants for this longitudinal study (n = 168) were aged 15-18 years and were from 10 cities in the San Francisco Bay Area. We collected survey data to measure participant characteristics, followed by 1 month of GPS tracking to measure exposure to alcohol outlets (separated into exposures near home and away from home for bars, restaurants, and off-premise outlets). A follow-up survey approximately 1 year later measured alcohol access (through outlets, family members, peers aged <21 years, peers aged ≥21 years) and alcohol consumption (e.g. count of drinking days in last 30). Generalized structural equation models related exposure to alcohol outlets, alcohol access, and alcohol consumption. Results: Exposure to bars and off-premise outlets near home was positively associated with accessing alcohol from peers aged <21, and in turn, accessing alcohol from peers aged <21 was positively associated with alcohol consumption. There was no direct association between exposure to alcohol outlets near home or away from home and alcohol consumption. Conclusions: Interventions that reduce adolescents' access through peers aged <21 may reduce adolescents' alcohol consumption.Item Assessing Individuals’ Exposure to Environmental Conditions Using Residence-Based Measures, Activity Location-Based Measures, and Activity Path-Based Measures(Wolters Kluwer, 2019-03) Morrison, Christopher N.; Byrnes, Hilary F.; Miller, Brenda A.; Kaner, Emily; Wiehe, Sarah E.; Ponicki, William R.; Wiebe, Douglas J.; Pediatrics, School of MedicineBackground: Many approaches are available to researchers who wish to measure individuals' exposure to environmental conditions. Different approaches may yield different estimates of associations with health outcomes. Taking adolescents' exposure to alcohol outlets as an example, we aimed to (1) compare exposure measures and (2) assess whether exposure measures were differentially associated with alcohol consumption. Methods: We tracked 231 adolescents 14-16 years of age from the San Francisco Bay Area for 4 weeks in 2015/2016 using global positioning systems (GPS). Participants were texted ecologic momentary assessment surveys six times per week, including assessment of alcohol consumption. We used GPS data to calculate exposure to alcohol outlets using three approach types: residence-based (e.g., within the home census tract), activity location-based (e.g., within buffer distances of frequently attended places), and activity path-based (e.g., average outlets per hour within buffer distances of GPS route lines). Spearman correlations compared exposure measures, and separate Tobit models assessed associations with the proportion of ecologic momentary assessment responses positive for alcohol consumption. Results: Measures were mostly strongly correlated within approach types (ρ ≥ 0.7), but weakly (ρ < 0.3) to moderately (0.3 ≤ ρ < 0.7) correlated between approach types. Associations with alcohol consumption were mostly inconsistent within and between approach types. Some of the residence-based measures (e.g., census tract: β = 8.3, 95% CI = 2.8, 13.8), none of the activity location-based approaches, and most of the activity path-based approaches (e.g., outlet-hours per hour, 100 m buffer: β = 8.3, 95% CI = 3.3, 13.3) were associated with alcohol consumption. Conclusions: Methodologic decisions regarding measurement of exposure to environmental conditions may affect study results.