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Item A patient- and parent-centered approach to urinary and fecal incontinence in children and adolescents with spina bifida: understanding experiences in the context of other competing care issue(Elsevier, 2023) Szymanski, Konrad M.; Carroll, Aaron E.; Misseri, Rosalia; Moore, Courtney M.; Hawryluk, Bridget A.; Wiehe, Sarah E.; Pediatrics, School of MedicineIntroduction: Despite significant and known challenges to urinary and fecal incontinence (UI and FI, respectively) among children with spina bifida (SB) and their families, few studies have identified patient-centered measures and approaches to assessing them. This study represents the first stage of a larger study to develop a patient-centered goal-setting tool to guide incontinence management (Figure). Our aim was to understand patient experiences of UI and FI, and what goals should be included in the tool. Methods: We used a qualitative research approach integrated with human-centered design methods. We recruited, in clinic and online, children with SB (8-17 years old) and parents (>=18 years old) of children with SB (8-17 years old). Online activities were analyzed by four experienced design researchers using affinity diagramming, group analysis and modeling activities (mind maps, challenge maps, experience maps). Recruitment and thematic qualitative analysis continued until saturation was reached. Results: Seventeen children with SB participated (9 female, 12 shunted, 13 using bladder catheterizations, 6 using Malone antegrade continence enema, median age: 15 years old). Fifteen parents participated (13 mothers/2 fathers, median age: 42 years old), including six mother-child dyads. Five major themes each were identified for UI and FI experiences: (1) negative emotional impact of incontinence, (2) unpredictability of incontinence, (3) challenging/unpleasant incontinence management, (4) inconvenient/unreliable incontinence management, (5) UI management having unpleasant complications and FI putting much responsibility on parents. We identified six UI goal domains and five FI goal domains. Four overlapping domains included: accidents, independence, interruptions at school and social/friends. Unique domains were: urinary tract infections (UI), catheterizations (UI) and enemas (FI). Comment: Findings of our study improve our understanding of children's and parents' experiences associated with incontinence in SB and potential continence goals. Conclusions: Children with SB experience incontinence as distressing and unpredictable. Incontinence management can be challenging and unreliable. Patient-centered continence goals cluster in domains, indicating how incontinence intermeshes with other life areas and offering potential approaches to structure continence goals in a goals-selection tool.Item The Advancing Understanding of Transportation Options (AUTO) study: design and methods of a multi-center study of decision aid for older drivers(BMC, 2021-05-03) Betz, Marian E.; Omeragic, Faris; Meador, Lauren; DiGuiseppi, Carolyn G.; Fowler, Nicole R.; Han, S. Duke; Hill, Linda; Johnson, Rachel L.; Knoepke, Christopher E.; Matlock, Daniel D.; Moran, Ryan; Medicine, School of MedicineBackground: Decision-making about when to stop driving for older adults involves assessment of driving risk, availability of support or resources, and strong emotions about loss of independence. Although the risk of being involved in a fatal crash increases with age, driving cessation can negatively impact an older adult's health and well-being. Decision aids can enhance the decision-making process by increasing knowledge of the risks and benefits of driving cessation and improve decision quality. The impact of decision aids regarding driving cessation for older adults is unknown. Methods: The Advancing Understanding of Transportation Options (AUTO) study is a multi-site, two-armed randomized controlled trial that will test the impact of a decision aid on older adults' decisions about changes in driving behaviors and cessation. AUTO will enroll 300 drivers age ≥ 70 years with a study partner (identified by each driver); the dyads will be randomized into two groups (n = 150/group). The decision aid group will view the web-based decision aid created by Healthwise at baseline and the control group will review information about driving that does not include evidence-based elements on risks and benefits and values clarification about driving decisions. The AUTO trial will compare the effect of the decision aid, versus control, on a) immediate decision quality (measured by the Decisional Conflict Scale; primary outcome); b) longitudinal psychosocial outcomes at 12 and 24 months (secondary outcomes); and c) longitudinal driving behaviors (including reduction or cessation) at 12 and 24 months (secondary outcomes). Planned stratified analyses will examine the effects in subgroups defined by cognitive function, decisional capacity, and readiness to stop driving. Discussion: The AUTO study is the first large-scale randomized trial of a driving decision aid for older adults. Results from this study will directly inform clinical practice about how best to support older adults in decision-making about driving.Item Applying Bayesian Cognitive Models to Decisions to Drive after Drinking(Wiley, 2021) McCarthy, Denis M.; McCarty, Kayleigh N.; Hatz, Laura E.; Prestigiacomo, Christiana J.; Park, Sanghyuk; Davis-Stober, Clintin P.; Psychology, School of ScienceBackground and aims: Despite widespread negative perceptions, the prevalence of alcohol-impaired driving (AID) in the United States remains unacceptably high. This study used a novel decision task to evaluate whether individuals considered both ride service cost and alcohol consumption level when deciding whether or not to drive, and whether the resulting strategy was associated with engagement in AID. Design: A two-sample study, where sample 1 developed a novel AID decision task to classify participants by decision strategy. Sample 2 was used to cross-validate the task and examine whether decision strategy classifications were predictive of prior reported AID behavior. Setting: A laboratory setting at the University of Missouri, USA. Participants: Sample 1 included 38 student participants from introductory psychology classes at the University of Missouri. Sample 2 included 67 young adult participants recruited from the local community. Measurements: We developed a decision task that presented hypothetical drinking scenarios that varied in quantity of alcohol consumption (one to six drinks) and the cost of a ride service ($5-25). We applied a Bayesian computational model to classify choices as consistent with either: integrating both ride cost and consumption level (compensatory) or considering only consumption level (non-compensatory) when making hypothetical AID decisions. In sample 2, we assessed established AID risk factors (sex, recent alcohol consumption, perceived safe limit) and recent (past 3 months) engagement in AID. Findings: In sample 1, the majority of participants were classified as using decision strategies consistent with either a compensatory or non-compensatory process. Results from sample 2 replicated the overall classification rate and demonstrated that participants who used a compensatory strategy were more likely to report recent AID, even after accounting for study covariates. Conclusions: In a hypothetical alcohol-impaired driving (AID) decision task, individuals who considered both consumption level and ride service cost were more likely to report recent AID than those who made decisions based entirely on consumption level.Item Assessment of Adolescent Decision-Making Capacity for Pharmacy Access to Hormonal Contraception(Elsevier, 2023) Wilkinson, Tracey A.; Meredith, Ashley H.; Katz, Amy J.; Meagher, Carolyn G.; Ott, Mary A.; Pediatrics, School of MedicineObjectives: To examine adolescents' decision-making capacity for pharmacsist-prescribed hormonal contraception. Study design: A subset of 60 females, ages 14-21, were recruited to complete the MacArthur Competence Assessment Tool-Treatment. Overall scores were compared by age and demographic factors and variation examined. Results: Participants scored high on the MacArthur Competence Assessment Tool-Treatment with little variation in the scores (18.8 [±1.9]/20 total points). Factors such as chronic illness, health literacy, and family affluence were not associated with of overall scores. Conclusions: Adolescents and young adults have the capacity to make decisions regarding contraception in the pharmacy access settings.Item Atypical Cortical Activation during Risky Decision-making in Disruptive Behavior Disordered Youth with Histories of Suicidal Ideation(Elsevier, 2020) Dir, Allyson L.; Allebach, Christian L.; Hummer, Tom A.; Adams, Zachary; Aalsma, Matthew C.; Finn, Peter R.; Nurnberger, John I.; Hulvershorn, Leslie A.; Psychiatry, School of MedicineBackground: Suicidality is a leading cause of death among adolescents. In addition to other psychiatric conditions, youths with attention-deficit/hyperactivity disorder (ADHD) and disruptive behavior disorders (DBDs) are at heightened risk for suicide. Decision-making deficits are a hallmark symptom of ADHD and DBDs and are also implicated in suicidal behavior. We examined behavioral and neural differences in decision making among youths with ADHD and DBDs with (SI+) and without (SI-) histories of suicidal ideation. Methods: The Balloon Analog Risk Task, a risky decision-making task, was completed by 57 youths with ADHD and DBDs (38% SI+) during functional magnetic resonance imaging. Mean stop wager (mean wager at which youths bank money) was the primary measure of risk taking. We conducted whole-brain and region-of-interest analyses in the anterior cingulate cortex and orbitofrontal cortex (OFC) during choice (win vs. inflate) and outcome (inflate vs. explode) contrasts using parametric modulators accounting for probability of balloon explosion. Results: There were no differences between SI+ and SI- youths in Balloon Analog Risk Task performance. SI+ youths showed decreasing activation in the right medial frontal gyrus when choosing inflate as explosion probability increased compared with SI- youths. During explosions, SI- youths showed increasing activation in the left OFC as explosions became more likely. SI+ showed increasing left medial OFC activity in response to inflations as explosion probability increased. Conclusions: SI+ youths may show heightened sensitivity to immediate reward and decreased sensitivity to potential loss as evidenced by medial frontal gyrus activity. OFC findings suggest that SI+ youths may be drawn to reward even when there is high probability of loss.Item Big data in the new media environment(2014-02) O'Donnell, Matthew Brook; Falk, Emily B.; Konrath, Sara H.Bentley et al. argue for the social scientific contextualization of “big data” by proposing a four-quadrant model. We suggest extensions of the east–west (i.e., socially motivated versus independently motivated) decision-making dimension in light of findings from social psychology and neuroscience. We outline a method that leverages linguistic tools to connect insights across fields that address the individuals underlying big-data media streams.Item Building a prototype of a continence goal-selection tool for children with spina bifida: patient, parental and urology provider recommendations(Elsevier, 2023) Szymanski, Konrad M.; Carroll, Aaron E.; Misseri, Rosalia; Moore, Courtney M.; Hawryluk, Bridget A.; Wiehe, Sarah E.; Pediatrics, School of MedicineIntroduction: No tools exist to help children with spina bifida (SB) describe their incontinence concerns and to help their providers account for them when evaluating management success. Our aim was to understand patients', parents', and clinicians' preferences about how a SB continence goal-selection tool (MyGoal-C) should look and function, and to create a tool prototype. Methods: We used a qualitative research approach integrated with human-centered design methods. We recruited children with SB (8-17 years old), parents ( ≥ 18 years old) of children with SB (8-17 years old) in clinic and online, and urology healthcare providers at our institution. We surveyed children and parents, and conducted parent and provider Zoom-based prototyping sessions to iteratively design the app. Design researchers analyzed online activities using affinity diagramming, group analysis and modeling activities. Provider sessions were analyzed with qualitative thematic analysis based on grounded theory. Recruitment continued until saturation was reached. Results: Thirteen children with SB participated (median age: 10 years old, 4 female, 9 shunted, 10 using bladder catheterizations). Thirty-seven parents participated (33 mothers, median age: 43 years old). Children and parents unanimously recommended an app and their comments generated 6 major theme domains: goal-setting process, in-app content, working toward goals, urology provider check-in, app customization, and using big data to improve future functionality. Twenty-one of the parents participated in 3 prototyping sessions with 6 breakout groups. The remaining 16 parents and 13 children then completed the Prototype Testing Survey, leading to a refined prototype and a visual flow map of the app experience (Figure). Feedback from 11 urology healthcare providers (7 female, 6 advanced practice providers) generated 8 themes: patient engagement/autonomy, clearly displaying results, integration into clinic workflow, not increasing clinical staff burden, potential clinician bias, parental involvement, limitations of the app, and future app adaptation. These cumulative data allowed for a construction of a final app prototype. Comment: Findings of our study lay the foundation for creating a goal-selection app that meets preferences and needs of children, parents, and providers. Next steps involve building the app, testing its usability and assessing it prospectively in a clinical setting. Conclusions: Children with SB and parents preferred an app to help them set and track continence goals. All stakeholders, including urology providers, offered complementary and mutually reinforcing feedback to guide the creation of an app prototype that would ultimately be integrated into a clinic visit.Item Career Decision-Making in Diverse Nursing Students: Choosing a Career in Nursing(2024-04) McCord, Geoffrey Aaron; Otte, Julie L.; Ellis, Rebecca; Carpenter, Janet S.; Schall, Carly E.The nursing profession lacks diversity that reflects the population it serves. The population of LPN/LVN and ADN students are known to be more diverse than BSN students. Little is known about the differences between the students in the three levels of nursing programs (LPN/LVN, ADN, BSN), including reasons for choosing nursing, and barriers and facilitators. The McCord Nursing Career and Educational Decision Pathway Conceptual Framework guided this study. A quantitative survey was conducted of current nursing students in the US. The study asked demographic information as well as motivating factors, barriers, and facilitators for choosing nursing and their program type (LPN/LVN, ADN, BSN). Responses from 741 nursing students in LPN/LVN, ADN, and BSN programs from 26 states. The study found significant differences between the students in the three educational pathways. There are significant racial and financial differences and differences in reasons for choosing nursing, educational background, commitments outside of school, and barriers to goal achievement. LPN/LVN students were more likely to be Black and ADN students were more likely to be Hispanic. There was greater racial diversity in the LPN/LVN and ADN groups. LPN/LVN students are more likely to identify nursing as their first career choice and most want to be an RN. LPN/LVN and ADN students were more worried than BSN students about their family commitments, financial obligations, and their ability to succeed in nursing school. Some of the lack of diversity in BSN programs reflects the challenges that racial minorities face in goal achievement. Identified barriers include outside financial commitments, the cost vii of nursing programs, and the length of time of the programs. The goal to increase diversity in nursing should consider the entire population of those who want to become nurses.Item Decision-making for prenatal genetic screening: how will pregnant women navigate a growing number of aneuploidy and carrier screening options?(Springer Nature, 2021-12-04) Farrell, Ruth M.; Pierce, Madelyn; Collart, Christina; Yao, Meng; Coleridge, Marissa; Chien, Edward K.; Rose, Susannah S.; Lintel, Mary; Perni, Uma; Tucker Edmonds, Brownsyne; Obstetrics and Gynecology, School of MedicineBackground: Prenatal genetic screens, including carrier screening (CS) and aneuploidy screening (AS), comprise an important component of reproductive healthcare delivery. Clinical practice guidelines emphasize the importance of informed decision-making and patient's preferences regarding the use of these screens. Yet, it is unclear how to achieve this ideal as prenatal genetic screening options rapidly become more complex and increasingly available to patients. With increased complexity and availability of reproductive testing options, decision-support strategies are critical to prepare patients to consider AS and/or CS. Methods: A self-administered survey evaluated knowledge and decision-making preferences for expanded carrier (CS) and aneuploidy (AS) prenatal screening. The survey was administered to participants before their first prenatal visit to assess baseline decision-making needs and preference at the initiation of prenatal care. Analysis was approached as a descriptive process. Results: Participants had similar familiarity with the concepts associated with AS compared to CS; mean knowledge scores for CS was 0.59 [possible range 0.00 to 1.00] and 0.55 for AS. Participants reported preferences to learn about a range of conditions, including those with severe or mild impact, childhood-onset, and adult-onset. Decision-making preference with respect to learning about the associated disease phenotypes for the contained on AS and CS panel shifted with the complexity of the panel, with a greater preference to learn about conditions post-test compared pre-test education as panels increased from 5 to 100 conditions. Conclusion: Patients' baseline knowledge of prenatal genetic screens coupled with evolving decision-making preferences presents challenges for the delivery of prenatal genetic screens. This calls for the development and implementation of innovative approaches to support pregnant patients' decision-making commensurate with advances in prenatal genomics.Item Electronic Health Records’ Support for Primary Care Physicians’ Situation Awareness: A Metanarrative Review(Sage, 2023) Savoy, April; Patel, Himalaya; Murphy, Daniel R.; Meyer, Ashley N.D.; Herout, Jennifer; Singh, HardeepObjective: Situation awareness (SA) refers to people's perception and understanding of their dynamic environment. In primary care, reduced SA among physicians increases errors in clinical decision-making and, correspondingly, patients' risk of experiencing adverse outcomes. Our objective was to understand the extent to which electronic health records (EHRs) support primary care physicians (PCPs)' SA during clinical decision-making. Method: We conducted a metanarrative review of papers in selected academic databases, including CINAHL and MEDLINE. Eligible studies included original peer-reviewed research published between January 2012 and August 2020 on PCP-EHR interactions. We iteratively queried, screened, and summarized literature focused on EHRs supporting PCPs' clinical decision-making and care management for adults. Then, we mapped findings to an established SA framework to classify external factors (individual, task, and system) affecting PCPs' levels of SA (1-Perception, 2-Comprehension, and 3-Projection) and identified SA barriers. Results: From 1504 articles identified, we included and synthesized 19 studies. Study designs were largely noninterventional. Studies described EHR workflow misalignments, usability issues, and communication challenges. EHR information, including lab results and care plans, was characterized as incomplete, untimely, or irrelevant. Unmet information needs made it difficult for PCPs to obtain even basic SA, Level 1 SA. Prevalent barriers to PCPs developing SA with EHRs were errant mental models, attentional tunneling, and data overload. Conclusion: Based on our review, EHRs do not support the development of higher levels of SA among PCPs. Review findings suggest SA-oriented design processes for health information technology could improve PCPs' SA, satisfaction, and decision-making.
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