The Patient Perspective on Colectomy for Recurrent Diverticulitis: A Qualitative Study.

OBJECTIVE: Understand the patient's decision-making process regarding colectomy for recurrent diverticulitis. BACKGROUND: The decision to pursue elective colectomy for recurrent diverticulitis is highly preference-sensitive. Little is known about the patient's perspective in this decision-making process. METHODS: We performed a qualitative study utilizing focus groups of patients with recurrent diverticulitis at 3 centers across the United States. Using an iterative inductive/deductive approach, we developed a conceptual framework to capture the major themes identified in the coded data. RESULTS: From March 2019 to July 2020, 39 patients were enrolled across 3 sites and participated in 6 focus groups. After coding the transcripts using a hierarchical coding system, a conceptual framework was developed. Major themes identified included participants' beliefs about surgery, such as normative beliefs (eg, subjective, value placed on surgery), control beliefs (eg, self-efficacy, stage of change), and anticipated outcomes (eg, expectations, anticipated regret); the role of behavioral management strategies (eg, fiber, eliminate bad habits); emotional experiences (eg, depression, embarrassment); current symptoms (eg, severity, timing); and quality of life (eg, cognitive load, psychosocial factors). Three sets of moderating factors influencing patient choice were identified: clinical history (eg, source of diagnosis, multiple surgeries), clinical protocols (eg, pre-op and post-op education), and provider-specific factors (eg, specialty, choice of surgeon). CONCLUSIONS: Patients view the decision to undergo colectomy through 3 major themes: their beliefs about surgery, their psychosocial context, and moderating factors that influence participant choice to undergo surgery. This knowledge is essential both for clinicians counseling patients who are considering colectomy and for researchers studying the process to optimize care for recurrent diverticulitis.

Qualitative Analysis of Patient Experiences Reaching Urethroplasty for Recurrent Urethral Stricture Disease.

PURPOSE: Despite the inferior outcomes, urethral stricture patients often undergo multiple endoscopic procedures prior to undergoing definitive urethroplasty. We sought to qualitatively evaluate the patient experience of obtaining urethroplasty to better understand the impact of this experience on quality of life. MATERIALS AND METHODS: Patients treated with urethroplasty between September 2019 and July 2021 were identified and invited to participate in our study if they had undergone ≥ 2 endoscopic procedures prior to urethroplasty. Semistructured telephone interviews were conducted, coded, and analyzed using an iterative inductive-deductive approach. RESULTS: Of the 105 urethroplasty patients during the study period, 50 (47.6%) had undergone ≥ 2 endoscopic procedures prior (IQR 3-5), of whom 20 participated in the study. Qualitative themes related to repeat endoscopic procedures included unmet treatment expectations, dissatisfaction with catheterization and repeat procedures, and negative impacts of recurrent stricture symptoms and treatments on quality of life. External factors associated with a delay to urethroplasty included financial constraints, surgeon access, and time off work. CONCLUSIONS: A trajectory of declining quality of life and unmet treatment expectations are the primary factors driving the decision to proceed with urethroplasty. However, external factors such as recovery costs and access to specialists play important roles in delaying surgery. These findings illustrate the need for improved community provider education and patient counseling to better inform expectations of both patients and providers with various treatment outcomes. Furthermore, these data highlight the need to improve access to specialized care for urethral stricture patients.

Determinants of appropriate antibiotic and NSAID prescribing in unscheduled outpatient settings in the veterans health administration.

BACKGROUND: Despite efforts to enhance the quality of medication prescribing in outpatient settings, potentially inappropriate prescribing remains common, particularly in unscheduled settings where patients can present with infectious and pain-related complaints. Two of the most commonly prescribed medication classes in outpatient settings with frequent rates of potentially inappropriate prescribing include antibiotics and nonsteroidal anti-inflammatory drugs (NSAIDs). In the setting of persistent inappropriate prescribing, we sought to understand a diverse set of perspectives on the determinants of inappropriate prescribing of antibiotics and NSAIDs in the Veterans Health Administration. METHODS: We conducted a qualitative study guided by the Consolidated Framework for Implementation Research and Theory of Planned Behavior. Semi-structured interviews were conducted with clinicians, stakeholders, and Veterans from March 1, 2021 through December 31, 2021 within the Veteran Affairs Health System in unscheduled outpatient settings at the Tennessee Valley Healthcare System. Stakeholders included clinical operations leadership and methodological experts. Audio-recorded interviews were transcribed and de-identified. Data coding and analysis were conducted by experienced qualitative methodologists adhering to the Consolidated Criteria for Reporting Qualitative Studies guidelines. Analysis was conducted using an iterative inductive/deductive process. RESULTS: We conducted semi-structured interviews with 66 participants: clinicians (N = 25), stakeholders (N = 24), and Veterans (N = 17). We identified six themes contributing to potentially inappropriate prescribing of antibiotics and NSAIDs: 1) Perceived versus actual Veterans expectations about prescribing; 2) the influence of a time-pressured clinical environment on prescribing stewardship; 3) Limited clinician knowledge, awareness, and willingness to use evidence-based care; 4) Prescriber uncertainties about the Veteran condition at the time of the clinical encounter; 5) Limited communication; and 6) Technology barriers of the electronic health record and patient portal. CONCLUSIONS: The diverse perspectives on prescribing underscore the need for interventions that recognize the detrimental impact of high workload on prescribing stewardship and the need to design interventions with the end-user in mind. This study revealed actionable themes that could be addressed to improve guideline concordant prescribing to enhance the quality of prescribing and to reduce patient harm.

Challenges in Disseminating Evidence-Based Health Promotion Programs in Faith Community Settings: What We Need to Include.

BACKGROUND: Effective dissemination of information about evidence-based programs (EBPs) is essential for promoting health equity. Faith-based and other community organizations have difficulty locating EBPs for implementation in their settings. A research team engaged in a systematic search to identify a menu of EBPs that could be offered to African American FBOs as part of a community-engaged implementation study. Methods. A four-stage process was developed to search for EBPs meeting seven inclusion criteria for dissemination in faith-based organizations (FBOs). Criteria included relevance to identified health disparity topics, endorsement on a federal website, free access to downloadable program materials, facilitator guidance, no requirements for health care providers, and culturally relevant materials for African American communities. RESULTS: Nineteen government websites were searched. Sixty-six potential EBPs were identified. Six EBPs met all inclusion criteria. DISCUSSION: The search for EBPs that met seven criteria for implementation in African American FBOs demonstrated challenges that have been described in the literature. Researchers encountered a lack of standardized terminology for identifying EBPs on federal websites, frequent requirement for health care providers or clinics and/or fees for training and materials. FBOs are supportive and safe places to offer EBPs to promote health, and EBPs need to be designed and disseminated to meet the needs and preferences of FBOs. Including members of FBOs and others in the community in EBP development, design, and dissemination, such as searchable health promotion EBP registries, can increase the likelihood that effective programs intended to address health disparities are readily accessible to FBOs for implementation.

Preoperative Depression Status and 5 Year Metabolic and Bariatric Surgery Outcomes in the PCORnet Bariatric Study Cohort.

OBJECTIVE: To examine whether depression status before metabolic and bariatric surgery (MBS) influenced 5-year weight loss, diabetes, and safety/utilization outcomes in the PCORnet Bariatric Study. SUMMARY OF BACKGROUND DATA: Research on the impact of depression on MBS outcomes is inconsistent with few large, long-term studies. METHODS: Data were extracted from 23 health systems on 36,871 patients who underwent sleeve gastrectomy (SG; n=16,158) or gastric bypass (RYGB; n=20,713) from 2005-2015. Patients with and without a depression diagnosis in the year before MBS were evaluated for % total weight loss (%TWL), diabetes outcomes, and postsurgical safety/utilization (reoperations, revisions, endoscopy, hospitalizations, mortality) at 1, 3, and 5 years after MBS. RESULTS: 27.1% of SG and 33.0% of RYGB patients had preoperative depression, and they had more medical and psychiatric comorbidities than those without depression. At 5 years of follow-up, those with depression, versus those without depression, had slightly less %TWL after RYGB, but not after SG (between group difference = 0.42%TWL, P = 0.04). However, patients with depression had slightly larger HbA1c improvements after RYGB but not after SG (between group difference = - 0.19, P = 0.04). Baseline depression did not moderate diabetes remission or relapse, reoperations, revision, or mortality across operations; however, baseline depression did moderate the risk of endoscopy and repeat hospitalization across RYGB versus SG. CONCLUSIONS: Patients with depression undergoing RYGB and SG had similar weight loss, diabetes, and safety/utilization outcomes to those without depression. The effects of depression were clinically small compared to the choice of operation.

Qualitative similarities and distinctions between participants' experiences with a yoga intervention and an attention control.

PURPOSE: This manuscript aims to compare and contrast acceptability and perceived benefits of yoga-skills training (YST) and an empathic listening attention control (AC) in the Pro-You study, a randomized pilot trial of YST vs. AC for adults receiving chemotherapy infusions for gastrointestinal cancer. METHODS: Participants were invited for a one-on-one interview at week 14 follow-up, after completing all intervention procedures and quantitative assessments. Staff used a semi-structured guide to elicit participants' views on study processes, the intervention they received, and its effects. Qualitative data analysis followed an inductive/deductive approach, inductively identifying themes and deductively guided by social cognitive theory. RESULTS: Some barriers (e.g., competing demands, symptoms), facilitators (e.g., interventionist support, the convenience of clinic-based delivery), and benefits (e.g., decreased distress and rumination) were common across groups. YST participants uniquely described the importance of privacy, social support, and self-efficacy for increasing engagement in yoga. Benefits specific to YST included positive emotions and greater improvement in fatigue and other physical symptoms. Both groups described some self-regulatory processes, but through different mechanisms: self-monitoring in AC and the mind-body connection in YST. CONCLUSIONS: This qualitative analysis demonstrates that participant experiences in a yoga-based intervention or an AC condition reflect social cognitive and mind-body frameworks of self-regulation. Findings can be used to develop yoga interventions that maximize acceptability and effectiveness and to design future research that elucidates the mechanisms by which yoga is efficacious.

The impact of COVID on end-of-life planning views, social connection, and quality of life for low-income, older adults: A qualitative study.

OBJECTIVES: Low-income, older adults are less likely than those with high income to participate in advance care planning (ACP); however, the pandemic may have influenced their views. The aim of this report was to explore the perceptions of COVID-19 related to everyday life and ACP. METHODS: We embedded ACP behavior inequities within the Social Ecological Model to highlight the importance of considering social inequities within an environmental context. Using a qualitative descriptive design, twenty individual interviews were conducted. Thematic analysis consisted of multiple rounds of independent and iterative coding by 2 coders that resulted in a hierarchically organized coding system. Final themes emerged through the inductive consideration of the transcript data and the deductive contribution of our theoretical framework. RESULTS: Three major themes emerged: social connection, quality of life, and end-of-life planning views. COVID-19 had not changed ACP views, i.e., those with existing ACP maintained it and those without ACP still avoided planning. SIGNIFICANCE OF RESULTS: Low-income, older adults experienced lower social connection and quality of life during COVID-19 but did not express changes to ACP views. Our findings of the loss of regular social practices and mental health struggles may have competed with participants' perception that this crisis had little, if any, effect on ACP. While clinicians should monitor low-income, older adults for ACP barriers during COVID-19, policymakers should prioritize ACP at the systems level. We plan to use participatory research methods to explore for the minimal ACP impact, focusing on barriers to ACP opportunities.

"The Problem's Bigger than We Are": Understanding How Local Factors Influence Child Welfare Responses to Substance Use in Pregnancy, A Qualitative Study.

State eligibility for certain federal child welfare funding requires a gubernatorial assurance that infants affected by substances receive plans of safe care (POSC). We conducted 18 interviews with state and county child welfare staff to understand how POSC has been implemented and found variability in practice driven by vague policy, challenges of cross-system collaboration, and a lack of knowledge about substance use disorder. Policy improvements should align requirements with POSC practice and create shared accountability with key partners.

Integrating Specialist Palliative Care in the Liver Transplantation Evaluation Process: A Qualitative Analysis of Hepatologist and Palliative Care Provider Views.

Patients undergoing evaluation for liver transplantation face heavy burdens of symptoms, health care use, and mortality. In other similarly ill populations, specialist palliative care has been shown to benefit patients, but specialist palliative care is infrequently used for liver transplantation patients. This project aims to describe the potential benefits of and barriers to specialist palliative care integration in the liver transplantation process. We performed qualitative analysis of transcripts from provider focus groups followed by a community engagement studio of patients and caregivers. Focus groups consisted of 14 palliative care specialists and 10 hepatologists from 11 institutions across the United States and Canada. The community engagement studio comprised patients and caregivers of patients either currently on the liver transplantation waiting list or recently after transplant. The focus groups identified 19 elements of specialist palliative care that could benefit this patient population, including exploring patients' illness understanding and expectations; assessing physical symptoms comprehensively; discussing patient values; and providing caregiver support, a safe space to discuss noncurative options, and anticipatory guidance about likely next steps. Identified barriers included role boundaries, differences in clinical cultures, limitations of time and staff, competing goals and priorities, misconceptions about palliative care, limited resources, changes in transplant status, and patient complexity. Community studio participants identified many of the same opportunities and barriers. This study found that hepatologists, palliative care specialists, patients, and caregivers identified areas of care for liver transplantation patients that specialist palliative care can improve and address.

Psychosocial impact of COVID-19 among adults in the southeastern United States.

Limited research has explored the mental health impact of coronavirus disease 2019 (COVID-19) in the U.S., especially among Black and low-income Americans who are disproportionately affected by COVID-19. To address this gap in the literature, we investigated factors associated with depressive and anxiety symptoms during the pandemic. From October to December 2020, over 4400 participants in the Southern Community Cohort Study (SCCS) completed a survey about the impact of the pandemic. The SCCS primarily enrolled adults with low income in 12 southeastern states. We used polytomous unconditional logistic regression to investigate factors associated with depressive and anxiety symptoms. About 28% of respondents reported mild or moderate/severe depressive symptoms and 30% reported mild or moderate/severe anxiety symptoms. Respondents in fair/poor health had significantly higher odds of moderate/severe depression and anxiety than those in very good/excellent health (depression: odds ratio (OR) = 4.72 [95% confidence interval (CI): 3.57-6.23]; anxiety: OR = 4.77 [95%CI: 3.63-6.28]). Similarly, living alone was associated with higher odds of moderate/severe depression and anxiety (depression: OR = 1.74 [95%CI: 1.38-2.18]; anxiety: OR = 1.57 [95%CI: 1.27-1.95]). Individuals whose physical activity or vegetable/fruit consumption decreased since the start of the pandemic also had higher odds of moderate/severe depression and anxiety. Results overall suggest that individuals in fair/poor health, living alone, and/or experiencing decreased physical activity and vegetable/fruit consumption have higher risk of depressive and anxiety symptoms. Clinical and public health interventions are needed to support individuals experiencing depression and anxiety during the pandemic.

Psychometric Impact of Priapism on Lives of Adolescents and Adults With Sickle Cell Anemia: A Sequential Independent Mixed-Methods Design.

Despite priapism being one of the most frequent complications of sickle cell anemia (SCA) in male individuals, little has been reported about the impact of priapism in this population. The authors used a sequential independent mixed-methods design, which used both international multicenter focus group discussions (n=35) and a quantitative patient-reported outcome measure (n=131) to determine the impact of priapism on men with SCA in Nigeria and the United States. The authors analyzed data from focus groups using an iterative inductive-deductive approach. Comparison of the Priapism Impact Profile data was done using the Kruskal-Wallis H test. Our result showed that priapism, across cultures, is associated with shame and embarrassment. These emotions interfere with timely clinical and family communication about priapism symptoms and complications. Participants were dissatisfied with the quality of care at emergency facilities. The quality of life and physical wellness of men with SCA-related priapism were significantly different for the 3 groups: (1) priapism condition getting better, (2) priapism condition getting worse, and (3) priapism condition remain the same (P=0.002 and P=0.019, respectively). Psychological, sexual, and physical wellbeing are all adversely affected by priapism. Evidence-based methods are necessary for adequate medical, educational, and psychological treatment for recurrent priapism.

Helicobacter pylori Management Is Associated with Predominantly Negative Patient Experiences: Results from a Focused Qualitative Analysis.

BACKGROUND: Helicobacter pylori eradication is associated with reduced gastric cancer and peptic ulcer disease incidence and mortality. Factors influencing patients' experiences surrounding H. pylori diagnosis and management are not well-described. Current patient perceptions can influence adherence to treatment, and also their anxieties related to this potentially carcinogenic condition. The objective of this study was to understand the patient experience surrounding H. pylori management and to qualitatively construct a contextual framework to inform and guide providers who manage patients with H. pylori infection. METHODS: We conducted a qualitative analysis using a focus group and one-on-one telephone interviews. An iterative inductive/deductive approach was applied to recorded transcripts to identify and hierarchically order themes. Patient experience was defined according to major themes within a structured health behavior framework. RESULTS: Theme saturation was achieved with thirteen participants (mean age 50.4 years; 62% female; 38% non-Hispanic white). Qualitative analysis yielded a total of 987 codes that resulted in five major themes related to the patient H. pylori experience: context of decision-making; health beliefs; barriers experienced; cues to action; and impact of new knowledge. These themes aligned with the Health Behavior Model framework. Participants were motivated to treat H. pylori. However, the experience was more often perceived negatively versus positively. The perceived patient-provider interaction contributed most prominently to the negative experience compared to other patient experiences, including treatment-related side effects. Internal cues, including symptoms and fear of cancer, modified participants' perceptions and motivation to accept treatment. CONCLUSIONS: Patient experiences related to H. pylori management are predominantly negative. Increasing providers' awareness about patients' values, beliefs, anxieties, and expectations surrounding H. pylori diagnosis/treatment may improve provider-patient communication and, ideally, related outcomes.

The Patient Experience of an Inadequate-Quality Bowel Preparation During the Colonoscopy Process: A Qualitative Study.

As many as 35% of patients may experience an inadequate-quality bowel preparation for colonoscopy, which may then require a repeated colonoscopy without insurance coverage. To our knowledge, there have been no qualitative studies with an in-depth exploration of patient experiences of this outcome. This study aimed to explore patients' perceptions of experiencing an inadequate preparation compared to those with only an adequate-quality bowel preparation history. Quantitative analyses were conducted for three one-item questions (e.g., anxiety rating) with ordinal scales. Qualitative data were collected from audio-recorded and transcribed telephone interviews ( N = 20) and anonymous online surveys ( N = 59). An inductive/deductive coding system was constructed, and themes were generated to form a conceptual framework. Brief quantitative results are provided. Themes of the colonoscopy process include context, prepreparation, implementation, outcomes, response, and decision to repeat. This novel study underscored the emotional experience of patients with inadequate preparation and subsequent influence on decisions to repeat the procedure. Recommendations are given for research, policy, and practice.

Factors influencing mothers' decisions regarding obstetrical care in Western Kenya: a mixed-methods study.

BACKGROUND: Siaya County in Western Kenya has one of the highest maternal mortality rates in Kenya. We sought to elucidate factors that influence mothers' decisions regarding where to seek obstetrical care, to inform interventions that seek to promote effective use of obstetric services and reduce maternal mortalities. To guide our research, we used the "Three Delays Model", focusing on the first delay-seeking care. While interventions to reduce maternal mortalities have focused on addressing delays in accessing and receiving care, context-specific data on drivers of the first delay are scarce. METHODS: We used a mixed-method study to assess how maternal decision-making of birth location is influenced by personal, contextual, and cultural factors. We conducted structured interviews with women aged 14 years or older living in Siaya, Bondo, and Yala, rural districts in Western Kenya. We then conducted focus group interviews with a subset of women to elucidate this question: How do drivers of the first delay (i.e., seeking care) affect the decision to seek home versus hospital delivery, potentially negatively influencing maternal mortality. RESULTS: Three hundred and seven women responded to the surveys, and 67 women (22%) from this group participated in focus group interviews. Although we focused on type 1 delays, we discovered that several factors that impact type 2 and type 3 delays directly contribute to type 1 delays. Our findings highlighted that factors influencing women's decisions to seek care are not simply medical or cultural but rather contextual, involving many elements of life, particularly in rural communities. CONCLUSIONS: It is imperative to address multiple-level factors that influence women's decisions to seek care and have in-hospital deliveries. To curtail maternal mortality in rural Western Kenya and comparable settings, targeted interventions must take into consideration these important influencers.

Understanding Listening-Related Fatigue: Perspectives of Adults with Hearing Loss.

OBJECTIVE: Adults with hearing loss (AHL) often report feeling fatigued after being in situations that require prolonged listening, an experience referred to as listening-related fatigue. We conducted focus groups to identify key domains and constructs of listening-related fatigue. Our goal was to create a theoretical framework for understanding listening-related fatigue that could guide the development of a reliable and valid assessment tool. DESIGN: Eight focus group discussions were conducted using a moderator's guide. Discussions were recorded, transcribed, coded, and analysed to identify common themes related to listening-related fatigue. A hierarchical coding manual was developed iteratively as new themes and subcategories were identified during the analysis process. STUDY SAMPLE: Forty-three adults (11 males; aged 20 to 77 years) with varying degrees of hearing loss participated in the focus groups. Participants included primarily hearing aid users (n = 34), hearing aid candidates (n = 6), and a small group of cochlear implant users (n = 3). RESULTS: Qualitative analyses revealed the multidimensional nature of listening-related fatigue for AHL, including physical, mental, emotional, and social domains. These varied experiences were influenced by the external (acoustic/environmental) characteristics of the listening situation, the internal state of the listener (cognitive/motivational), and coping strategies implemented to modify the listening experience. The use of amplification had both positive and negative effects on listening-related fatigue. CONCLUSIONS: For some AHL, the consequences of listening-related fatigue can be significant, negatively impacting their quality of life. Data from these focus groups provides a framework for understanding the experience of listening-related fatigue among AHL. This is a critical first step in the development of a tool for measuring listening-related fatigue in this at-risk group.

The Partnership to Improve Diabetes Education Trial: a Cluster Randomized Trial Addressing Health Communication in Diabetes Care.

BACKGROUND: Effective type 2 diabetes care remains a challenge for patients including those receiving primary care in safety net settings. OBJECTIVE: The Partnership to Improve Diabetes Education (PRIDE) trial team and leaders from a regional department of health evaluated approaches to improve care for vulnerable patients. DESIGN: Cluster randomized controlled trial. PATIENTS: Adults with uncontrolled type 2 diabetes seeking care across 10 unblinded, randomly assigned safety net clinics in Middle TN. INTERVENTIONS: A literacy-sensitive, provider-focused, health communication intervention (PRIDE; 5 clinics) vs. standard diabetes education (5 clinics). MAIN MEASURES: Participant-level primary outcome was glycemic control [A1c] at 12 months. Secondary outcomes included select health behaviors and psychosocial aspects of care at 12 and 24 months. Adjusted mixed effects regression models were used to examine the comparative effectiveness of each approach to care. KEY RESULTS: Of 410 patients enrolled, 364 (89%) were included in analyses. Median age was 51 years; Black and Hispanic patients represented 18% and 25%; 96% were uninsured, and 82% had low annual income level (< $20,000); adequate health literacy was seen in 83%, but numeracy deficits were common. At 12 months, significant within-group treatment effects occurred from baseline for both PRIDE and control sites: adjusted A1c (- 0.76 [95% CI, - 1.08 to - 0.44]; P < .001 vs - 0.54 [95% CI, - 0.86 to - 0.21]; P = .001), odds of poor eating (0.53 [95% CI, 0.33-0.83]; P = .01 vs 0.42 [95% CI, 0.26-0.68]; P < .001), treatment satisfaction (3.93 [95% CI, 2.48-6.21]; P < .001 vs 3.04 [95% CI, 1.93-4.77]; P < .001), and self-efficacy (2.97 [95% CI, 1.89-4.67]; P < .001 vs 1.81 [95% CI, 1.1-2.84]; P = .01). No significant difference was observed between study arms in adjusted analyses. CONCLUSIONS: Both interventions improved the participant's A1c and behavioral outcomes. PRIDE was not more effective than standard education. Further research may elucidate the added value of a focused health communication program in this setting.

Barriers and facilitators to dissemination and adoption of precision medicine among Hispanics/Latinos.

BACKGROUND: With the rapid advances in gene technologies in recent years, the potential benefits of precision medicine (PM) may spread unevenly to disadvantaged populations, such as Hispanics/Latinos. The objective of this study was to explore patient-level barriers and facilitators to dissemination and adoption of PM among Hispanics/Latinos, including knowledge and awareness. METHODS: Self-identified Hispanics/Latinos from diverse countries in Latin America (N = 41) participated in the study. Using a cross-sectional observational qualitative research design, six focus groups and a demographic questionnaire were collected in English and Spanish. Qualitative content analysis was utilized to code the transcripts and identify emerging themes. RESULTS: Hispanics/Latinos never heard of and had no knowledge about PM. Barriers to dissemination and adoption of PM included lack of health insurance, financial burden, participants' immigration status, distrust of government, limited English proficiency, low literacy levels, cultural norms, fear about genetic testing results, lack of transportation, newness of PM, and lack of information about PM. Facilitators included family support; information provided in Spanish; use of plain language and graphics; assistance programs for uninsured; trust in physicians, healthcare staff, well-known hospitals, academic institutions, and health care providers and community organization as sources of reliable information; personal motivation, and altruism or societal benefit. CONCLUSIONS: Culturally-and linguistically-tailored, low-literacy educational material about PM should be created in English and Spanish. Future research should examine provider-level and system-level barriers and facilitators to implementation and adoption of PM among Hispanic/Latino patients.

Breaking down walls: a qualitative evaluation of perceived emergency department delays for patients transferred with ST-elevation myocardial infarction.

BACKGROUND: Despite regionalization efforts, delays at transferring hospitals for patients transferred with ST-elevation myocardial infarction (STEMI) for primary percutaneous coronary intervention (PCI) persist. These delays primarily occur in the emergency department (ED), and are associated with increased mortality. We sought to use qualitative methods to understand staff and clinician perceptions underlying these delays. METHODS: We conducted semi-structured interviews at 3 EDs that routinely transfer STEMI patients to identify staff perceptions of delays and potential interventions. Interviews were recorded, transcribed, coded, and analyzed using an iterative inductive-deductive approach to build and refine a list of themes and subthemes, and identify supporting quotes. RESULTS: We interviewed 43 ED staff (staff, nurses, and physicians) and identified 3 major themes influencing inter-facility transfers of STEMI patients: 1) Processes, 2) Communication; and 3) Resources. Standardized processes (i.e., protocols) reduce uncertainty and can mobilize resources. Use of performance benchmarks can motivate staff but are frequently focused on internal, not inter-organizational performance. Direct use ofcommunication between ORGANIZATIONS can process uncertainty and expedite care. Record sharing and regular post-transfer communication could provide opportunities to discuss and learn from delays and increase professional satisfaction. Finally, characteristics of resources that enhanced their capacity, clarity, experience, and reliability were identified as contributing to timely transfers. CONCLUSIONS: Processes, communication, and resources were identified as modifying inter-facility transfer timeliness. Potential quality improvement strategies include ongoing updates of protocols within and between organizations to account for changes, enhanced post-transfer feedback between organizations, shared medical records, and designated roles for coordination.

Development of the Initial Surveys for the All of Us Research Program.

BACKGROUND: The All of Us Research Program is building a national longitudinal cohort and collecting data from multiple information sources (e.g., biospecimens, electronic health records, and mobile/wearable technologies) to advance precision medicine. Participant-provided information, collected via surveys, will complement and augment these information sources. We report the process used to develop and refine the initial three surveys for this program. METHODS: The All of Us survey development process included: (1) prioritization of domains for scientific needs, (2) examination of existing validated instruments, (3) content creation, (4) evaluation and refinement via cognitive interviews and online testing, (5) content review by key stakeholders, and (6) launch in the All of Us electronic participant portal. All content was translated into Spanish. RESULTS: We conducted cognitive interviews in English and Spanish with 169 participants, and 573 individuals completed online testing. Feedback led to over 40 item content changes. Lessons learned included: (1) validated survey instruments performed well in diverse populations reflective of All of Us; (2) parallel evaluation of multiple languages can ensure optimal survey deployment; (3) recruitment challenges in diverse populations required multiple strategies; and (4) key stakeholders improved integration of surveys into larger Program context. CONCLUSIONS: This efficient, iterative process led to successful testing, refinement, and launch of three All of Us surveys. Reuse of All of Us surveys, available at http://researchallofus.org, may facilitate large consortia targeting diverse populations in English and Spanish to capture participant-provided information to supplement other data, such as genetic, physical measurements, or data from electronic health records.

Sickle cell carriers' unmet information needs: Beyond knowing trait status.

Benefits of identifying sickle cell disease (SCD) carriers include detection of at-risk couples who may be informed on reproductive choices. Studies consistently report insufficient knowledge about the genetic inheritance pattern of SCD among people with sickle cell trait (SCT). This study explored perspectives of adults with SCT on the information needed to make an informed reproductive decision and the recommendations for communicating SCT information. Five focus groups (N = 25) were conducted with African Americans with SCT ages 18-65 years old. Participants were asked about their knowledge of SCT, methods for finding information on SCT, impact of SCT on daily living, and interactions with healthcare providers. An inductive-deductive qualitative analysis was used to analyze the data for emerging themes. Four themes emerged, highlighting the unmet information needs of African American sickle cell carriers: (a) SCT and SCD Education; (b) information sources; (c) improved communication about SCT and SCD; and (d) increased screening strategies. Future studies are needed to determine effective strategies for communicating SCT information and to identify opportunities for education within community and medical settings. Identifying strategies to facilitate access to SCT resources and education could serve as a model for meeting unmet information needs for carriers of other genetic conditions.