Treatment preference archetypes in eosinophilic esophagitis and their implications for therapy.

BACKGROUND: Little is known about how patients make decisions about and prioritize, therapies and disease management in eosinophilic esophagitis (EoE). We aimed to systematically identify and characterize patient perspectives and attitudes that influence decision making for EoE management. METHODS: To understand the diverse attitudes and values of EoE patients, we designed a study using the Q-method. We iteratively developed 31 statements related to EoE disease management. Participants sorted statements by ranking from +4 (most agree) to -4 (most disagree). By-person factor analysis, using 2- and 3- factor rotation, revealed distinct preference archetypes. RESULTS: Thirty-four adults with EoE (mean age 40.9, 51.4% male, 82.9% White) were recruited from gastroenterology and allergy clinics from a single center. We identified two treatment-centered archetypes: Medication preference, driven by symptoms and the desire to minimize risk of complications, and Natural treatment preference, focusing on identifying trigger foods and diet adherence. Three-factor analysis revealed an additional archetype: Treatment ambivalent, a view of EoE as a mild and episodic (not chronic) disease with low priority to treat. Comparison by factor revealed 54% of those in the natural preference archetype were recategorized as treatment ambivalent, suggesting that they see natural treatment as a less complicated or milder strategy and may be at risk of nonadherence and reduced treatment uptake. CONCLUSIONS: We identified three distinct treatment preference archetypes among individuals with EoE, underscoring the need for personalized treatment strategies, especially for those favoring natural approaches but masking ambivalence, and may be at risk for nonadherence or loss to follow-up.

Public deliberation to assess patient views on biosimilar medication switching for the treatment of inflammatory bowel disease.

BACKGROUND: Biosimilars are highly similar, but not identical, versions of originator biologic medications. Switching patients to biosimilars presents an opportunity to mitigate rising drug costs and expand patient access to important biologic therapies. However, decreased patient acceptance and adherence to biosimilar medications have been reported, which can lead to loss of treatment response, adverse reactions, and inefficient resource utilization. Understanding patient perceptions of biosimilars and biosimilar switching is needed to inform patient-centered care strategies that promote efficient resource utilization. METHODS: We used democratic deliberation methods to solicit the informed and considered opinions of patients regarding biosimilar switching. Patients with inflammatory bowel disease (IBD; n = 29) from the Veterans Health Administration (VHA) participated in 5-hour deliberation sessions over two days. Following educational presentations with experts, participants engaged in facilitated small group discussions. Transcripts and facilitators' notes were used to identify key themes. Participants completed surveys pre- and post-deliberation to collect sociodemographic and clinical features as well as to assess IBD treatment knowledge and attitudes toward care and approaches to biosimilar switching. RESULTS: Five major themes emerged from the small group discussions in the context of biosimilar switching: 1) concerns about adverse consequences and unclear risk-benefit balance; (2) importance of communication and transparency; (3) desire for shared decision making and patient involvement in treatment decisions; (4) balancing cost-saving with competing priorities; and (5) advocating for individualized care and prioritization based on risk levels. These views led participants to favor approaches that prioritize switching the sickest patients last (i.e., those with poorly controlled disease) and that offer patients control and choices around biosimilar switching. Participants also expressed preferences for combining elements of different approaches to maximize fairness. CONCLUSIONS: Approaches to biosimilar switching should consider patients' desires for transparency and effective communication about biosimilar switching and engagement in their medical decision-making as part of patient-centered care. Incorporating patient preferences around biosimilar switching is critical when navigating the quality and affordability of care in resource constrained settings, both within the VHA and in other healthcare systems.

"Extremely slow and capricious": A qualitative exploration of genetic researcher priorities in selecting shared data resources.

PURPOSE: Genetic researchers' selection of a database can have scientific, regulatory, and ethical implications. It is important to understand what is driving database selection such that database stewards can be responsive to user needs while balancing the interests of communities in equitably benefiting from advances. METHODS: We conducted 23 semistructured interviews with US academic genetic researchers working with private, government, and collaboratory data stewards to explore factors that they consider when selecting a genetic database. RESULTS: Interviewees used existing databases to avoid burdens of primary data collection, which was described as expensive and time-consuming. They highlighted ease of access as the most important selection factor, integrating concepts of familiarity and efficiency. Data features, such as size and available phenotype, were also important. Demographic diversity was not originally cited by any interviewee as a pivotal factor; when probed, most stated that the option to consider diversity in database selection was limited. Database features, including integrity, harmonization, and storage were also described as key components of efficient use. CONCLUSION: There is a growing market and competition between genetic data stewards. Data need to be accessible, harmonized, and administratively supported for their existence to be translated into use and, in turn, result in scientific advancements across diverse communities.

Women's decision-making autonomy in Dutch maternity care.

BACKGROUND: A positive childbirth experience is an important outcome of maternity care. A significant component of a positive birth experience is the ability to exercise autonomy in decision-making. In this study, we explore women's reports of their autonomy during conversations about their care with maternity care practitioners during pregnancy and childbirth. METHOD: Data were obtained from a cross-sectional survey of women living in The Netherlands that asked about their experiences during pregnancy and childbirth, including their role in conversations concerning decisions about their care. RESULTS: A total of 3494 women were included in this study. Most women scored high on autonomy in decision-making conversations. During the latter stage of pregnancy (32+ weeks) and in childbirth, women reported significantly lower levels of autonomy in their care conversations with obstetricians as compared with midwives. Linear regression analyses showed that women's perception of personal treatment increased women's reported autonomy in their conversations with both midwives and obstetricians. Almost half (49.1%) of the women who had at least one intervention during birth reported pressure to accept or submit to that intervention. This was indicated by 48.3% of women with induced labor, 47.3% who had an instrumental vaginal birth, 45.2% whose labor was augmented, and 41.9% of women who had a cesarean birth. CONCLUSIONS: In general, women's sense of autonomy in decision-making conversations during prenatal care and birth is high, but there is room for improvement, and this appeared most notably in conversations with obstetricians. Women's sense of autonomy can be enhanced with personal treatment, including shared decision-making and the avoidance of pressuring women to accept interventions.

Barriers to Guideline-Based Use of Proton Pump Inhibitors to Prevent Upper Gastrointestinal Bleeding.

PURPOSE: Gastrointestinal (GI) bleeding is one of the most common serious adverse drug events. Guidelines recommend proton pump inhibitor (PPI) gastroprotection to prevent upper GI bleeding in high-risk patients, but this practice is underused. METHODS: To explore prescribing practices and barriers to the use of PPI gastroprotection, including dynamics within and across specialties, we conducted semistructured interviews with physicians in 4 specialties at a single institution. We performed thematic analysis of barriers, organized around the theoretical domains framework. RESULTS: The sample included 5 primary care physicians (PCPs), 4 cardiologists, 3 gastroenterologists, and 3 vascular surgeons. Most PCPs, gastroenterologists, and vascular surgeons seldom prescribed PPI gastroprotection. Cardiologists varied most in their use of PPI gastroprotection, with some prescribing it consistently and others never. Major barriers related to the following 3 themes: (1) knowledge, (2) decision processes, and (3) professional role. Knowledge of guidelines was greatest among cardiologists and gastroenterologists and low among PCPs and vascular surgeons, and PCPs tended to focus on adverse effects associated with PPIs, which made them reluctant to prescribe them. For cardiologists, prevention of bleeding was usually a priority, but they sometimes deferred prescribing to others. For the other 3 specialties, PPI gastroprotection was a low priority. There was unclear delineation of responsibility for prescribing gastroprotection between specialties. CONCLUSIONS: Major barriers to PPI gastroprotection relate to knowledge, decision processes, and professional role, which operate differentially across specialties. Multicomponent interventions will likely be necessary to improve guideline-based use of PPIs to prevent upper GI bleeding.VISUAL ABSTRACT.

Sources of information used by women during pregnancy and the perceived quality.

BACKGROUND: Access to reliable information is critical to women's experience and wellbeing during pregnancy and childbirth. In our information-rich society, women are exposed to a wide range of information sources. The primary objective of this study was to explore women's use of information sources during pregnancy and to examine the perceived usefulness and trustworthiness of these sources. METHOD: A quantitative cross-sectional study of Dutch women's experiences with various information sources during pregnancy, including professional (e.g. healthcare system), and informal sources, divided into conventional (e.g. family or peers) and digital sources (e.g. websites or apps). Exploratory backward stepwise multiple regression was performed to identify associations between the perceived quality of information sources and personal characteristics. RESULTS: A total of 1922 pregnant women were included in this study. The most commonly used information sources were midwives (91.5%), family or friends (79.3%), websites (77.9%), and apps (61%). More than 80% of women found professional information sources trustworthy and useful, while digital sources were perceived as less trustworthy and useful. Personal factors explain only a small part of the variation in the perceived quality of information sources. CONCLUSION: Even though digital sources are perceived as less trustworthy and useful than professional and conventional sources, they are among the most commonly used sources of information for pregnant women. To meet the information needs of the contemporary generation of pregnant women it is essential that professionals help in the development of digital information sources.

Taking the burden off: a study of the quality of ethics consultation in the time of COVID-19.

BACKGROUND: The quality of ethics consults is notoriously difficult to measure. Survey-based assessments cannot capture nuances of consultations. To address this gap, we conducted interviews with health professionals who requested ethics consults during the initial phase of the COVID-19 pandemic. METHOD: Healthcare professionals requesting ethics consultation between March 2020 and May 2020 at a tertiary academic medical centre were eligible to participate. We asked participants to comment on the consults they called and thematically analysed responses to identify features associated with optimal quality consultations. RESULTS: Of 14 healthcare providers, 8 (57%) were women and professions were as follows: 11 (79%) medical doctors, 1 (7%) social worker, 1 (7%) physician assistant and 1 (7%) nurse practitioner. Two aspects of quality emerged: satisfaction and value. Themes within the domain of satisfaction included: responsiveness of the ethics consultant, willingness to consult, institutional role of the ethics service and identifying areas for improvement. When describing value, respondents spoke of the intrapersonal and interpersonal worth of consultation. CONCLUSION: Participants were generally satisfied with ethics consultation services, similar to opinions of those found in pre-COVID-19 survey studies. Our qualitative approach allowed for a richer exploration of the value of ethics consultation during the pandemic and has implications for ethics consultation services more broadly. Ethics consultation-emphasising both the process and outcome-created valuable moral spaces, promoting thoughtful and ethical responses to dilemmas in patient care. Future assessments should incorporate patient and family/surrogate perspectives and explore the domain of education as an additional quality measure.

A Tale of Two Bioethics.

Phase 1 drug trials-first-in-human tests of new pharmaceuticals- are necessary for FDA approval, and healthy volunteers are necessary to conduct those trials. Bioethicists are rightly concerned with the morally problematic aspects of these trials: Are risks and benefits balanced? Are would-be volunteers sufficiently informed, and have they given proper consent? But these are not the only, or even the most worrisome, ethical problems with Phase 1 research. In Adverse Events (2020), Jill Fisher looks beyond these ordinary bioethical concerns to the moral complications associated with the motivations of healthy volunteers and the demands of the everyday work of running those trials. Her work is the latest example of a much needed "second bioethics." Unlike the "first bioethics," this approach views health-care institutions from the outside, examining the structural and organizational sources that generate the ethical quandaries bioethicists are called upon to mediate and the ethical problems they often fail to see. Adverse Events makes clear that the moral problems of medicine can only be addressed by supporting bioethics of both types-the first and the second.

What patients with eosinophilic esophagitis may not share with their providers: a qualitative assessment of online health communities.

BACKGROUND: Little is known about how patients with eosinophilic esophagitis (EoE) experience their symptoms, receive care, and cope with their disease. Patients commonly seek peer support from online communities, which provide insights on unmet needs and barriers to care. We performed a qualitative analysis of electronic health forums to characterize patient-to-patient conversations about EoE symptoms and the experience of disease. METHODS: We identified three publicly accessible electronic health forums hosting EoE communities. Conversation threads posted between July 2018 and June 2020 were coded using emergent and a priori codes based on the THRIVE conceptual framework of coping with chronic illness. RESULTS: Of 659 threads (4,933 posts) collected over two years, a random sample of 240 threads (30 per 3-month quarter) were selected for analysis. Thematic saturation was reached after 172 threads. Patient experience of EoE was driven by their perspectives in four key domains: (i) perception of EoE as episodic rather than chronic, (ii) treatment choices, (iii) personal definitions of success in the disease, and (iv) views of providers. CONCLUSION: Online health communities are a valuable and unfiltered source of patient perspectives that can be used to understand patient needs and goals. EoE patients interpret their disease as sporadic events and lack reliable sources of knowledge, which may influence how patients prioritize treatment. If providers are to succeed in providing high-quality EoE care, they need to equip themselves with evidence-based knowledge, engage in shared decision making, and look outside of clinical settings to recognize barriers to disease management.

Stakeholders' Experiences of Research Integrity Support in Universities: A Qualitative Study in Three European Countries.

Fostering research integrity (RI) increasingly focuses on normative guidance and supportive measures within institutions. To be successful, the implementation of support should be informed by stakeholders' experiences of RI support. This study aims to explore experiences of RI support in Dutch, Spanish and Croatian universities. In total, 59 stakeholders (Netherlands n = 25, Spain n = 17, Croatia n = 17) participated in 16 focus groups in three European countries. Global themes on RI support experiences were identified by thematic analysis. Themes identified were: 'RI governance and institutional implementation', 'RI roles and structures', 'RI education and supervision', and 'Infrastructure, technology and tools supporting daily practice'. Experiences of support differed between countries in relation to: the efforts to translate norms into practice; the extent to which RI oversight was a responsibility of RE structures, or separate RI structures; and the availability of support close to research practice, such as training, responsible supervision, and adequate tools and infrastructure. The study reinforces the importance of a whole institutional approach to RI, embedded within local jurisdictions, rules, and practices. A whole institutional approach puts the emphasis of responsibility on institutions rather than individual researchers. When such an approach is lacking, some stakeholders look for intervention by authorities, such as funders, outside of the university.

"Helping fill that gap:" a qualitative study of aging in place after disaster through the lens of home-based care providers.

BACKGROUND: During a disaster, home-based care fills the critical need for continuation of health care. Home-based care is intended to function using existing care delivery models, continuing to provide care for patients wherever they are located, including in shelters and hotels. Home-based care providers are often the closest in contact with their patients -seeing them in place, even throughout a disaster- through which they develop a unique insight into aging in place during a disaster. The purpose of this study was to identify individual and community-level support needs of older adults after a disaster through the lens of home-based care providers. METHODS: Using qualitative inquiry, five focus groups were conducted with home-based care providers (n = 25) who provided in-home care during Hurricane Irma and Hurricane Harvey. Participants were identified by contacting home health agencies listed in an open-source database of agencies participating in Centers for Medicare and Medicaid Services programs. Data were coded using an abductive analytic approach, and larger themes were generated in light of existing theory. RESULTS: The results were distilled into eight themes that related to the importance of community and family, informal and formal supports throughout the disaster management cycle, maintaining autonomy during a disaster, and institutional and systemic barriers to obtaining assistance. CONCLUSIONS: In this study, home-based care providers described the challenges aging adults face in the response and recovery period after a large-scale disaster including maintaining continuity of care, encouraging individual preparedness, and accessing complex governmental support. Listening to home-based care providers offers new and important insights for developing interventions to address social and health needs for older adults aging in place after a large-scale disaster.

Physicians' Perceptions of Proton Pump Inhibitor Risks and Recommendations to Discontinue: A National Survey.

OBJECTIVE: To provide contemporary estimates of internists' perceptions of adverse effects associated with proton pump inhibitors (PPIs) and self-reported clinical use. METHODS: We invited 799 internists, including specialists and postgraduate trainees, to complete an online survey. Topics included perceptions of PPI adverse effects (AEs) and effectiveness for upper gastrointestinal bleeding (UGIB) prevention, changes in prescribing, and management recommendations for patients using PPIs for gastroesophageal reflux disease or UGIB prevention. We used logistic regression to identify factors associated with appropriate PPI continuation in the scenario of a patient at high risk for UGIB. RESULTS: Among 437 respondents (55% response rate), 10% were trainees and 72% specialized in general medicine, 70% were somewhat/very concerned about PPI AEs, and 76% had somewhat/very much changed their prescribing. A majority believed PPIs increase the risk for 6 of 12 AEs queried. Fifty-two percent perceived PPIs to be somewhat/very effective for UGIB prevention. In a gastroesophageal reflux disease scenario in which PPI can be safely discontinued, 86% appropriately recommended PPI discontinuation. However, in a high-risk UGIB prevention scenario in which long-term PPI use is recommended, 79% inappropriately recommended discontinuation. In this latter scenario, perceived effectiveness for bleeding prevention was strongly associated with continuing PPI (odds ratio 7.68, P < 0.001 for moderately; odds ratio 17.3, P < 0.001 for very effective). Other covariates, including concern about PPI AEs, had no significant association. DISCUSSION: Most internists believe PPIs cause multiple AEs and recommend discontinuation even in patients at high risk for UGIB. Future interventions should focus on ensuring that PPIs are prescribed appropriately according to individual risks and benefits.

Euthanasia and Assisted Suicide of Persons With Dementia in the Netherlands.

OBJECTIVE: To describe the characteristics of persons with dementia receiving euthanasia/assisted suicide (EAS) and how the practice is regulated in the Netherlands. DESIGNS: Qualitative directed content analysis of dementia EAS reports published by the Dutch euthanasia review committees between 2011 and October 5, 2018. RESULTS: Seventy-five cases were reviewed: 59 concurrent requests and 16 advance requests. Fifty-three percent (40/75) were women, and 48% (36/75) had Alzheimer disease. Advance request EAS patients were younger, had dementia longer, and more frequently had personal experience with dementia. Some concurrent request EAS patients were quite impaired: 15% (9/59) were deemed incompetent by at least one physician; in 24% (14/59), patients' previous statements or current body language were used to assess competence. In 39% (29/75), patients' own physicians declined to perform EAS; in 43% (32/75), the physician performing EAS was new to them. Physicians disagreed about patients' eligibility in 21% (16/75). All advance request and 14 (25%) concurrent request patients had an advance euthanasia directive but the conditions of applicability often lacked specificity. In 5 of 16 advance request EAS and 2 of 56 concurrent request EAS cases, EAS procedure was modified (e.g., premedication). Twenty-five percent (4/16) of advance request cases did not meet legal due care criteria, in particular the "unbearable suffering" criterion. CONCLUSIONS: Advance and concurrent request EAS cases differ in age, duration of illness, and past experience. Advance request EAS cases were complicated by ambiguous directives, patients being unaware of the EAS procedure, and physicians' difficulty assessing "unbearable suffering." Notably, some concurrent request patients were quite impaired yet deemed competent by appeals to previous statements.

Women's characteristics and care outcomes of caseload midwifery care in the Netherlands: a retrospective cohort study.

BACKGROUND: The maternity care system in the Netherlands is well known for its support of community-based midwifery. However, regular midwifery practices typically do not offer caseload midwifery care - one-to-one continuity of care throughout pregnancy and birth. Because we know very little about the outcomes for women receiving caseload care in the Netherlands, we compared caseload care with regular midwife-led care, looking at maternal and perinatal outcomes, including antenatal and intrapartum referrals to secondary (i.e., obstetrician-led) care. METHODS: We selected 657 women in caseload care and 1954 matched controls (women in regular midwife-led care) from all women registered in the Dutch Perinatal Registry (Perined) who gave birth in 2015. To be eligible for selection the women had to be in midwife-led antenatal care beyond 28 gestational weeks. Each woman in caseload care was matched with three women in regular midwife-led care, using parity, maternal age, background (Dutch or non-Dutch) and region. These two cohorts were compared for referral rates, mode of birth, and other maternal and perinatal outcomes. RESULTS: In caseload midwifery care, 46.9% of women were referred to obstetrician-led care (24.2% antenatally and 22.8% in the intrapartum period). In the matched cohort, 65.7% were referred (37.4% antenatally and 28.3% in the intrapartum period). In caseload care, 84.0% experienced a spontaneous vaginal birth versus 77.0% in regular midwife-led care. These patterns were observed for both nulliparous and multiparous women. Women in caseload care had fewer inductions of labour (13.2% vs 21.0%), more homebirths (39.4% vs 16.1%) and less perineal damage (intact perineum: 41.3% vs 28.2%). The incidence of perinatal mortality and a low Apgar score was low in both groups. CONCLUSIONS: We found that when compared to regular midwife-led care, caseload midwifery care in the Netherlands is associated with a lower referral rate to obstetrician-led care - both antenatally and in the intrapartum period - and a higher spontaneous vaginal birth rate, with similar perinatal safety. The challenge is to include this model as part of the current effort to improve the quality of Dutch maternity care, making caseload care available and affordable for more women.

Eliciting patient views on the allocation of limited healthcare resources: a deliberation on hepatitis C treatment in the Veterans Health Administration.

BACKGROUND: In response to the development of highly effective but expensive new medications, policymakers, payors, and health systems are considering novel and pragmatic ways to provide these medications to patients. One approach is to target these treatments to those most likely to benefit. However, to maximize the fairness of these policies, and the acceptance of their implementation, the values and beliefs of patients should be considered. The provision of treatments for chronic hepatitis C (CHC) in the resource-constrained context of the Veterans Health Administration (VHA) offered a real-world example of this situation, providing the opportunity to test the value of using Democratic Deliberation (DD) methods to solicit the informed opinions of laypeople on this complex issue. METHODS: We recruited Veterans (n = 30) from the VHA to attend a DD session. Following educational presentations from content experts, participants engaged in facilitated small group discussions to: 1) identify strategies to overcome CHC treatment barriers and 2) evaluate, vote on, and modify/improve two CHC treatment policies - "first come, first served" (FCFS) and "sickest first" (SF). We used transcripts and facilitators' notes to identify key themes from the small group discussions. Additionally, participants completed pre- and post-DD surveys. RESULTS: Most participants endorsed the SF policy over the FCFS policy, emphasizing the ethical and medical appropriateness of treating the sickest first. Concerns about SF centered on the difficulty of implementation (e.g., how is "sickest" determined?) and unfairness to other Veterans. Proposed modifications focused on: 1) the need to consider additional health factors, 2) taking behavior and lifestyle into account, 3) offering education and support, 4) improving access, and 5) facilitating better decision-making. CONCLUSIONS: DD offered a robust and useful method for addressing the allocation of the scarce resource of CHC treatment. Participants were able to develop a modified version of the SF policy and offered diverse recommendations to promote fairness and improve quality of care for Veterans. DD is an effective approach for incorporating patient preferences and gaining valuable insights for critical healthcare policy decisions in resource-limited environments.

Reinforcing medical authority: clinical ethics consultation and the resolution of conflicts in treatment decisions.

Despite substantial efforts in the past 15 years to professionalise the field of clinical ethics consultation, sociologists have not re-examined past hypotheses about the role of such services in medical decision-making and their effect on physician authority. In relation to those hypotheses, we explore two questions: (i) What kinds of issues does ethics consultation resolve? and (ii) what is the nature of the resolution afforded by these consults? We examined ethics consultation records created between 2011 and mid-2015 at a large tertiary care US hospital and found that in most cases, the problems addressed are not novel ethical dilemmas as classically conceived, but are instead disagreements between clinicians and patients or their surrogates about treatment. The resolution offered by a typical ethics consultation involves strategies to improve communication rather than the parsing of ethical obligations. In cases where disagreements persist, the proposed solution is most often based on technical clinical judgements, reinforcing the role of physician authority in patient care and the ethical decisions made about that care.

Maternity Providers' Perspectives on Barriers to Utilization of Intermittent Fetal Monitoring: A Qualitative Study.

There are 2 approaches to fetal assessment during labor: continuous electronic fetal monitoring (EFM) and intermittent auscultation (IA). The vast majority of healthy labors in the United States use EFM, despite professional organization recommendations against its use for low-risk pregnancies. This qualitative investigation explores maternity care team members' perspectives on why EFM is the dominant approach to fetal assessment instead of IA. Focus groups comprised of nurses, midwives, and physicians were conducted using a semistructured interview guide. Transcripts were analyzed using directed content analysis to identify themes related to clinical and nonclinical factors influencing the type of fetal assessment employed during labor. Seven focus groups with a total of 41 participants were completed. Seven themes were identified: clinical environment; technology; policies, procedures, and evidence-based protocols; patient-centered influences; fear of liability; providers as members of healthcare team; and deflection of responsibility. All maternity care team members had knowledge of the evidence base supporting IA use for low-risk care. Nurses identified unique challenges in having agency over monitoring decision making and executing best practices. Improved communication among team members can facilitate evidence-based approaches to IA use, facilitating increased utilization for low-risk labor care.

Identification of core ethical topics for interprofessional education in the intensive care unit: a thematic analysis.

Medical educators have not identified effective approaches for interprofessional ethics education of clinicians who work in intensive care units (ICUs), in spite of the fact that ICUs have a high incidence of ethical conflicts. As a first step in designing an interprofessional ethics education initiative tailored to the needs of ICU team members, we interviewed 12 professionals from the medical and surgical ICUs of a tertiary care academic medical center to understand what they know about medical ethics. Respondents were interviewed between November 2016 and February 2017. We used the 'think aloud' approach and realist thematic analysis of the sessions to evaluate the extent and content of interprofessional team members' knowledge of medical ethics. We found wide variation in their knowledge of and facility in applying the principles and concepts of biomedical ethics and ways of resolving ethical conflicts. Ethics education tailored to these areas will help equip critical care professionals with the necessary knowledge and skills to discuss and address ethical conflicts encountered in the ICU. Preventive ethics rounds are one approach for providing real-time, embedded interprofessional ethics education in the clinical setting.

Patients' Perceptions of Proton Pump Inhibitor Risks and Attempts at Discontinuation: A National Survey.

OBJECTIVES: Little is known about how reports on the adverse effects of proton pump inhibitors (PPIs) impact patients' perceptions of these drugs and medication use. We sought to determine patients' level of concern about PPI adverse effects and its association with attempts to discontinue these drugs. METHODS: This study is an online survey of US adults who use PPIs for gastroesophageal reflux disease. Topics included awareness of and concern about PPI adverse effects, prior discussion with providers, and attempts to stop PPI because of concern about adverse effects. For the primary analysis, we used logistic regression to identify associations between having attempted to stop PPI and concern about PPI-related adverse effects, a provider's recommendation to stop, risk of upper gastrointestinal bleeding (UGIB), age, and gender. RESULTS: Among 755 patient participants, mean age was 49 years (s.d. 16), 71% were women, and 24% were at high risk of UGIB. Twenty percent of patients were able to write in ≥1 reported adverse effect, and 46% endorsed awareness of ≥1 adverse effect when presented with a list, most commonly chronic kidney disease (17%). Thirty-three percent of patients were slightly concerned, 32% somewhat concerned, and 14% extremely concerned about adverse effects. Twenty-four percent of patients had discussed PPI risks and benefits with a provider, and 9% had been recommended to stop. Thirty-nine percent had attempted to stop their PPI, most (83%) without a provider recommendation. Factors associated with an attempt at stopping PPI included: (i) provider recommendation to stop (odds ratio [OR] 3.26 [1.82-5.83]); (ii) concern about adverse effects (OR 5.13 [2.77-9.51] for slightly, 12.0 [6.51-22.2] for somewhat, and 19.4 [9.75-38.7] for extremely concerned); and (iii) female gender (OR 1.64 [1.12-2.39]). Patients at high risk of UGIB were as likely to have attempted to stop as others (OR 0.98 [0.66-1.44]). CONCLUSIONS: Concern about PPIs is common and strongly associated with attempts at discontinuation, even without a provider's recommendation. Notably, individuals at high risk of UGIB, who benefit from PPIs, were equally likely to have tried stopping PPIs as others. Providers should proactively discuss the risks and benefits of PPIs with their patients, who may otherwise make unwise decisions about PPI management on their own.