"I Didn't Know What I Didn't Know:" Assessment of Adolescent Oncology Patient Engagement in Decision-Making.

INTRODUCTION: Little is known about the best way to engage an adolescent oncology patient in decision-making. To integrate adolescent oncology patients most effectively in decision-making, it is important to understand their perceptions not only as adolescents but also as adult survivors who have had time to reflect upon their experience. The purpose of this study is to explore perceptions of survivors of pediatric cancer to better understand their attitudes toward participation in decision-making, decisional regret, and use of decision-support tools. METHODS: An electronic survey tool, containing open- and closed-ended responses, was distributed to adult cancer survivors diagnosed and treated for cancer between the ages of 9 and 18 at a Midwestern, Comprehensive Cancer Center within a tertiary care academic hospital. RESULTS: Seventy responses were received. Nearly all respondents (96%) reported that decisions made on their behalf were consistent with their desires most/all the time. Almost one-fifth felt that increased involvement would have intensified their anxiety. Eighty-five percent did not regret choices made about their cancer treatment, and 88% would have made the same choices again. Respondents desired more targeted information on the long-term impacts of treatment (i.e., infertility, memory difficulties, mental health concerns), and they highlighted the importance of communication in the decision-making process. CONCLUSIONS: Adolescents want to participate in the decision-making process in a way that accommodates their understanding of the pathology and potential impacts of treatment. Our results suggest that developing a simple intervention to help facilitate provision of such anticipatory guidance may be helpful.

Ethical and Professional Issues Encountered by Fourth-Year Medical Students during a Critical Care Clerkship before and during the COVID-19 Pandemic.

OBJECTIVES: The objective of this study was to describe ethical and professional issues encountered and the ethical and professional values cited by medical students during their critical care clerkship, with a comparison of issues encountered before and during the coronavirus disease 2019 (COVID-19) pandemic. METHODS: In this single-center, retrospective mixed-methods study, two investigators at a midwestern US academic medical center performed qualitative content analysis on reflections written by fourth-year medical students about ethical and professional issues encountered during their critical care rotations between March 2016 and September 2021. We also analyzed the ethical/professional values mentioned in their reflections. Descriptive and inferential (χ2) statistics were performed to examine differences in issues and values cited before and during the pandemic. RESULTS: Respondents highlighted several key themes identified in prior studies, including decision making (64.1%), communication between clinicians and families (52.2%), and justice-related issues (32.1%), as well as interdisciplinary communication (25.7%) and issues related to the role of students in the intensive care unit (6.1%). Six novel subthemes were identified in this group, predominantly related to resource availability and end-of-life care. Of 343 reflections, 69% were written before the pandemic. Analysis of ethical and professional issues before and during COVID were notable for several significant differences, including increased discussion of inadequate tools/supplies/equipment (1.3% before vs 17.6% during, P = 0.005) and/or access to care (3.9% before vs 17.6% during, P = 0.03) and increased concerns about the tension between law and ethics (21.2% before vs 41.2% during, P = 0.028). Primacy of patient welfare (49.8% before vs 47.2% during, P = 0.659) and patient autonomy (51.1% before vs 38.9% during, P = 0.036) were the most commonly cited ethical principles in both time frames, often discussed concurrently and in tension. CONCLUSIONS: Although the COVID-19 pandemic was associated with increased reflection by medical students about resources in the intensive care unit, their perception of ethical issues arising in critical illness remained largely focused on enduring challenges in shared decision-making. These findings should be considered when developing ethics curricula for critical care rotations.

Evaluation of a Novel Question Prompt List in Pediatric Surgical Oncology.

INTRODUCTION: Parents of children with cancer describe interactions with clinicians as emotionally distressing. Patient engagement in treatment discussions decreases decisional conflict and improves decision quality which may limit such distress. We have shown that parents prefer to engage surgeons by asking questions, but parents may not know what to ask. Question Prompt Lists (QPLs), structured lists of questions designed to help patients ask important questions, have not been studied in pediatric surgery. We developed a QPL designed to empower parents to ask meaningful questions during pediatric surgical oncology discussions. We conducted a mixed methods analysis to assess the acceptability, appropriateness, and feasibility of using the QPL. METHODS: Key stakeholders at an academic children's hospital participated in focus groups to discuss the QPL. Focus groups were recorded and transcribed. Participants were surveyed regarding QPL acceptability, appropriateness, and feasibility. Thematic content analysis of transcripts was performed. RESULTS: Four parents, five nurses, five nurse practitioners, five oncologists, and four surgeons participated. Seven key themes were identified: (1) QPL as a tool of empowerment; (2) stick to the surgical details; (3) QPLs can impact discussion quality; (4) time consuming, but not overly disruptive; (5) parental emotion may impact QPL use; (6) provide QPLs prior to surgical consultation in both print and digital formats; and (7) expansion of QPLs to other disciplines. Over 70% of participants agreed that the QPL was acceptable, appropriate, and feasible. CONCLUSIONS: Our novel QPL is acceptable, appropriate, and feasible to use with parents of pediatric surgical oncology patients.

Practical wisdom in medicine through the eyes of medical students and physicians.

BACKGROUND: Practical wisdom is considered a multidimensional virtue of enduring relevance to medicine. Though it has received increasing attention in recent years, proposed frameworks for practical wisdom can differ, and little is known about how medical students and physicians describe its dimensions and relevance. METHODS: We used structured interviews, employing open-ended and closed-ended questions, to describe how medical students and physicians understand practical wisdom and identify the kinds of clinical situations they believe require practical wisdom. We interviewed 102 participants at two US medical schools in 2021, comprising a voluntary response sample of 40 pre-clinical medical students and 40 clinical medical students and a purposive sample of 22 nominated physicians. Interviews were conducted by videoconference using a structured interview guide. Open-ended responses were coded using qualitative content analysis (directed and conventional) and tabulated; closed-ended responses were tabulated. Quotations provided qualitative illustrations, and frequencies were used for summative results. RESULTS: Participants considered practical wisdom clinically meaningful, broadly relevant and multidimensional. Most described it as deliberative, goal-directed, context-sensitive, integrated with ethics and marked by integrity and motivation to act. Many described it as experience-based, person-centred or problem-solving. Participants also selected an average of 15.6 (SD = 4.9) additional virtues as being essential for practical wisdom in medicine and described a broad range of clinical situations that require practical wisdom in medicine. CONCLUSIONS: Participants described practical wisdom as a multidimensional capacity that entails deliberation, depends on a constellation of other virtues and is broadly applicable to medicine. Most agreed it is goal-directed and context-sensitive and involves ethics, integrity and motivation. Efforts to teach practical wisdom in medical education should clarify its dimensions and highlight its relationship to virtue ethics, professionalism, clinical judgement and the individualised care of patients as persons.

Epidemics and the healthcare professional's duty to care: Students' attitudes about work requirements before and during Covid-19 (2017-2021).

CONTEXT: The Covid-19 pandemic has added a new chapter to discussions about the professional duty to care. To understand how Covid-19 may have changed medical students' ethical attitudes towards this duty, we analysed policies written before and during the pandemic by first-year students completing a yearly educational exercise focused on work requirement expectations for healthcare professionals during a hypothetical epidemic. METHODS: Within a repeated cross-sectional design, consensus coding was performed on policies written over 5 years (2017-2021) using a codebook based on eight questions from the educational exercise for summative content analysis. Frequencies provided summative results and comparisons across years used Fisher's exact test. RESULTS: We analysed 142 written policies from 2017 to 2021 representing 884 first-year students working in small groups. Students' commitment to the duty to care remained stable during the Covid-19 pandemic, but during the pandemic, students were more likely to support exceptions to the duty to care (e.g. for healthcare professionals with medical conditions or concern for household members' health) and more likely to expect institutions to provide safe working conditions. Ethical values supporting students' policies were largely consistent before and during the pandemic, the most common being beneficence, justice, duty to care, non-maleficence and utility. CONCLUSIONS: Our results suggest that students' support for the duty to care remained strong during the Covid-19 pandemic. We also found that students supported exceptions to this duty to reflect the needs of healthcare professionals and their families and that they expected institutions to provide safe working conditions. These findings can help inform ethics education and future pandemic preparedness.

A valued voice: A qualitative analysis of parental decision-making preferences in emergent paediatric surgery.

INTRODUCTION: Shared decision-making, with an emphasis on patient autonomy, is often advised in healthcare decision-making. However, this may be difficult to implement in emergent settings. We have previously demonstrated that when considering emergent operations for their children, parents prefer surgeon guidance as opposed to shared decision-making. Here, we interviewed parents of paediatric patients who had undergone emergent operations to better understand parental decision-making preferences. METHODS: Parents of paediatric patients who underwent surgery over the past 5 years at a University-based, tertiary children's hospital for cancer, an emergent operation while in the neonatal intensive care unit (NICU) or extracorporeal membrane oxygenation (ECMO) were invited to complete a 60-min semi-structured interview. Interviews were digitally recorded and transcribed verbatim. Thematic content analysis was performed via deductive and inductive analysis. An iterative approach to thematic sampling/data analysis was used. RESULTS: Thematic saturation was achieved after 12 interviews (4 cancer, 5 NICU and 3 ECMO). Five common themes were identified: (1) recommendations from surgeons are valuable; (2) 'lifesaving mode': parents felt there were no decisions to be made; (3) effective ways of obtaining information about treatment; (4) shared decision-making as a 'dialogue' or 'discussion' and (5) parents as a 'valued voice' to advocate for their children. CONCLUSIONS: When engaging in decision-making regarding emergent surgical procedures for their children, parents value a surgeon's recommendation. Parents felt that discussion or dialogue with surgeons defined shared decision-making, and they believed that the opportunity to ask questions gave them a 'valued voice', even when they felt there were no decisions to be made. PATIENT OR PUBLIC CONTRIBUTION: For this study, we interviewed parents of paediatric patients who had undergone emergent operations to better understand parental decision-making preferences. Parents thus provided all the data for the study.

Discrepancies in decision making preferences between parents and surgeons in pediatric surgery.

BACKGROUND: Little data exists regarding decision-making preferences for parents and surgeons in pediatric surgery. Here we investigate whether parents and surgeons have similar decision-making preferences as well as which factors influence those preferences. Specifically, we compare parents' and surgeons' assessments of the urgency and complexity of pediatric surgical scenarios and the impact of their assessments on decision-making preferences. METHODS: A survey was emailed to parents of patients evaluated in a university-based pediatric surgery clinic and surgeons belonging to the American Pediatric Surgical Association. The survey asked respondents to rate 6 clinical vignettes for urgency, complexity, and desired level of surgeon guidance using the Controlled Preferences Scale (CPS). RESULTS: Regarding urgency, parents were more likely than surgeons to rate scenarios as emergent when cancer was involved (parents: 68.8% cancer vs. 29.5% non-cancer, p < .001; surgeons: 19.2% cancer vs. 25.4% non-cancer, p = .051). Parents and surgeons were more likely to rate a scenario as emergent when a baby was involved (parents: 45.2% baby vs. 36.2% child, p = .001; surgeons: 28.0% baby vs. 14.0% child, p < .001). Regarding decision-making preferences, parents and surgeons had similar CPS scores (2.56 vs. 2.72, respectively). Multivariable analysis showed parents preferred more surgeon guidance when scenarios involved a baby (OR 1.22; 95% CI 1.08-1.37; p < 0.01) or a cancer diagnosis (OR 1.29; 95% CI 1.11-1.49; p < 0.01), and that both parents and surgeons preferred more surgeon guidance when a scenario was considered emergent (parents: OR 1.81; 95% CI 1.37-2.38, p < 0.001; surgeons: OR 2.48 95% CI 1.76-3.49, p < 0.001). CONCLUSIONS: When a pediatric patient is a baby or has cancer, parents are more likely then surgeons to perceive the clinical situation to be emergent, and both parents and surgeons prefer more surgeon guidance in decision-making when a clinical scenario is considered emergent. More research is needed to understand how parents' decision-making preferences depend on clinical context.

Shared decision making in surgery: a scoping review of patient and surgeon preferences.

BACKGROUND: Many suggest that shared decision-making (SDM) is the most effective approach to clinical counseling. It is unclear if this applies to surgical decision-making-especially regarding urgent, highly-morbid operations. In this scoping review, we identify articles that address patient and surgeon preferences toward SDM in surgery. METHODS: We used the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews (PRISMA-ScR) to develop our protocol. Medline, EMBASE, and Cochrane databases were searched from inception through 11.2017. Title/abstract review identified peer-reviewed, empirical articles that addressed patient/surgeon preferences toward SDM in surgery. Identified articles underwent full review by two independent investigators. We addressed the following questions: (1) What is known from existing empirical evidence about patients' and/or surgeons' surgical decision-making preferences? (2) Why might patients and/or surgeons prefer SDM? (3) Does acuity of intervention impact surgical decision-making preferences? Outcome measures included study methods, surgical specialty, diagnosis, study location/setting, type/number of subjects, acuity of intervention, surgeon/patient decision-making preferences, and factors associated with favoring SDM. Data was analyzed in Microsoft Excel. RESULTS: 20,359 articles were identified with 4988 duplicates, yielding 15,371 articles for title/abstract review. 74 articles were included in final analysis. 68% of articles discussed oncologic decision-making. 46% of these focused on breast cancer. 92% of articles included patients, 22% included surgeons. 75% of articles found surgeons favored SDM, 25% demonstrated surgeons favored surgeon guidance. 54% of articles demonstrated patients favored SDM, 35% showed patients favored surgeon guidance, 11% showed patients preferred independent decision-making. The most common factors for patients favoring SDM included female gender, higher education, and younger age. For surgeons, the most common factors for favoring SDM included limited evidence for a given treatment plan, multiple treatment options, and impact on patient lifestyle. No articles evaluated decision-making preferences in an emergent setting. CONCLUSIONS: There has been limited evaluation of patient and surgeon preferences toward SDM in surgical decision-making. Generally, patients and surgeons expressed preference toward SDM. None of the articles evaluated decision-making preferences in an emergent setting, so assessment of the impact of acuity on decision-making preferences is limited. Extension of research to complex, emergent clinical settings is needed.

Prospect Theory Concepts Applied to Family Members of Nursing Home Residents with Cancer: A Good Ending Is a Gain.

Family members are often involved in medical decision-making on behalf of a nursing home resident. Prospect theory provides a framework for understanding how people weigh decisions. In the current study, prospect theory concepts are used to build understanding about how family members weigh medical decisions for an NH resident diagnosed with cancer. This is a secondary analysis of qualitative interview data from 24 family members of nursing home residents. Prospect theory concepts of gain, loss, risk, and reference point were used deductively in qualitative content analysis. Themes were developed by comparing content related to these four concepts, across the transcripts from the 24 participants. Three themes comprise the main findings, including "Don't prolong this," "A good ending is a gain," and "Experience can facilitate seeing the big picture." Prospect theory concepts applied to decisions faced by family members were useful in building an understanding of what participants considered as gains, losses, risks, and reference points. Many participants framed the medical decisions within the larger context of the resident's life and concluded that jeopardizing the chance for a peaceful dying process was too high a risk. Medical interventions were selected or avoided because of the impact on a comfortable dying process; considered a gain. Advance care planning discussions and goals of care discussions can benefit by directly addressing what residents/patients, families, and health practitioners consider outcomes worth pursuing and avoiding.

Do surgeons and patients/parents value shared decision-making in pediatric surgery? A systematic review.

BACKGROUND: Shared decision-making (SDM) is touted as the preferred approach to clinical counseling. However, few data exist regarding whether patients prefer SDM over surgeon-guided discussions for complex surgical decision-making. Even fewer data exist regarding surgeon preferences. Such issues may be especially pronounced in pediatric surgery given the complex decision-making triad between patients/parents and surgeons. The objective of this systematic review was to evaluate patient/parent and surgeon attitudes toward SDM in pediatric surgery. METHODS: A systematic review of English language articles in Medline, EMBASE, and Cochrane databases was performed. Inclusion and exclusion criteria were predefined. Text screening and data abstraction were performed by two investigators. RESULTS: Seven thousand five hundred eighty-four articles were screened. Title/abstract review excluded 7544 articles, and full-text review excluded four articles. Thirty-six articles were identified as addressing patient/parent or surgeon preferences toward SDM in pediatric surgery. Subspecialties included Otolaryngology (33%), General Surgery (30%), Plastics (14%), Cardiac (11%), Urology (8%), Neurosurgery (6%), Orthopedics (6%), and Gynecology (3%). Most studies (94%) evaluated elective/nonurgent procedures. The majority (97%) concentrated on patient/parent preferences, whereas only 22% addressed surgeon preferences. Eleven percent of studies found that surgeons favored SDM, and 73% demonstrated that patients/parents favored SDM. CONCLUSIONS: Despite recommendations that SDM is the preferred approach to clinical counseling, our systematic literature review shows that few studies evaluate patient/parent and surgeon attitudes toward SDM in pediatric surgery. Of these studies, very few focus on complex, urgent/emergent decision-making. Further research is needed to understand whether patients/parents, as well as surgeons, may prefer a more surgeon-guided approach to decision-making, especially when surgery is complex or taking place in urgent/emergent settings.

Ethical issues identified by obstetrics and gynecology learners through a novel ethics curriculum.

OBJECTIVE: Obstetrics and gynecology (ob/gyn) is fraught with bioethical issues, the professional significance of which may vary based on clinical experience. Our objective was to utilize our novel ethics curriculum to identify ethics and professionalism issues highlighted by ob/gyn learners and to compare responses between learner levels to further inform curricular development. STUDY DESIGN: We introduced an integrated and dynamic ob/gyn ethics and professionalism curriculum and mixed methods analysis of 181 resulting written reflections (case observation and assessments) from third-year medical students and from first- to fourth-year ob/gyn residents. Content was compared by learner level using basic thematic analysis and summary statistics. RESULTS: Within the 7 major ethics and professionalism domains, learners wrote most frequently about miscellaneous ob/gyn issues such as periviability and abortion (22% of students, 20% of residents) and problematic treatment decisions (20% of students, 19% of residents) rather than professional duty, communication, justice, student-/resident-specific issues, or quality of care. The most commonly discussed ob/gyn area by both learner groups was obstetrics rather than gynecology, gynecologic oncology, or reproductive endocrinology and infertility, although residents were more likely to discuss obstetrics-related concerns than students (65% vs 48%; P = .04) and students wrote about gynecologic oncology-related concerns more frequently than residents (25% vs 6%; P = .002). In their reflections, sources of ethical value (eg, the 4 classic ethics principles, professional guidelines, and consequentialism) were cited more frequently and in greater number by students than by residents (82% of students cited at least 1 source of ethical value vs 65% of residents; P = .01). Residents disagreed more frequently with the ethical propriety of clinical management than did students (67% vs 43%; P = .005). CONCLUSION: Our study introduces an innovative and dynamic approach to an ob/gyn ethics and professionalism curriculum that highlights important learner-identified ethics and professionalism issues both specific to ob/gyn and common to clinical medicine. Findings will help ob/gyn educators best utilize and refine this flexible curriculum such that it is appropriately focused on topics relevant to each learner level.

Procedural Interventions for Terminally Ill Children - Are We Aiding Palliation?

Objectives: Many children undergo surgery or an invasive procedure during their terminal hospital admission.1 The types of procedures, patients, and the intent of the procedures has not been well defined. Understanding these details may help pediatric surgeons better determine the clinical settings in which certain procedures will not enhance palliation or survival. Methods: A retrospective single institution chart review was performed for patients age 14 days to 18 years with chronic conditions who died while inpatient from 2013-2017. Data was gathered on demographics, primary diagnosis, intubation status, palliative care involvement, duration of hospital stay, length of palliative care involvement, and total number of procedures. Negative binomial regression was used to assess association with number of procedures. Results: 132 children met inclusion criteria. Most children were White and less than one year old. The most common type of diagnosis was cardiac in nature. Children underwent an average of three procedures. 75% were intubated and 77.5% had palliative care involved. Patients who were less than one year old at death were more likely to have been intubated, had longer terminal hospital stays, and had more procedures. Those who were intubated underwent more procedures and had longer hospital stays. Those with longer palliative care involvement had fewer procedures. Conclusions: Children undergo a significant number of surgical procedures during their terminal hospitalization. This may be influenced by age, intubation status, and length of stay. Ongoing study may help refine which procedures may have limited impact on survival in the chronically ill pediatric population.

National survey of provider opinions on controversial characteristics of liver transplant candidates.

Candidate selection for liver transplantation presents challenging ethical issues that require balancing the principles of justice and utility. The goal of this study was to assess the opinions of U.S. transplant providers regarding the ways in which controversial medical and psychosocial characteristics influence patient eligibility for liver transplantation. An online, anonymous survey about adult patient characteristics was sent to providers (hepatologists, surgeons, psychiatrists, and social workers) at all 102 active adult liver transplant centers in the United States. A majority of the providers (251/444 or 56.5%) completed the survey. The providers were queried about 8 characteristics, and the 3 that were ranked most controversial were incarceration, marijuana use, and psychiatric diagnoses. Most providers identified a patient age ≥ 80 years (62.7%), a body mass index ≥ 45 kg/m2 (56.6%), and current incarceration with a lifetime sentence (54.7%) as absolute contraindications to liver transplantation. In a multivariate analysis, the identification of absolute contraindications varied significantly with the provider type, the center volume, and the geographical region. Less than half of the providers reported that their centers had written policies regarding most of the characteristics examined. In conclusion, providers differ significantly in their opinions on controversial patient characteristics and transplant contraindications. Along with a paucity of literature data on outcomes, these provider differences may play a role in the fact that many centers do not have formal policies for selecting patients with these characteristics. Evidence-based data on the outcomes of such patients are needed to guide the formation of written policies to better standardize eligibility criteria.

A closer look at the recommended criteria for disclosing genetic results: perspectives of medical genetic specialists, genomic researchers, and institutional review board chairs.

Next generation sequencing offers benefit of improved health through knowledge, but comes with challenges, such as inevitable incidental findings (IFs). The applicability of recommended criteria for disclosure of individual results when applied to disclosure of IFs is not well known. The purpose of this study was to examine how medical genetic specialists, genomic researchers, and Institutional Review Board (IRB) chairs perceive the importance of recommended criteria when applied to genetic/genomic IFs. We conducted telephone interviews with medical genetic specialists (genetic counselors, genetic nurses, medical geneticists, laboratory professionals), genomic researchers, and IRB chairs (N = 103). Respondents rated and discussed the importance of nine recommended criteria regarding disclosure of genetic/genomic IFs. Stakeholders agreed the most important criteria for disclosure were: (1) the IF points to a life-threatening condition; (2) there is a treatment; (3) individuals indicate in writing they wanted to be informed of IFs. Criteria rated less important were: analytic validity, high penetrance, association with a young age of onset and relative risk more than 2.0. Respondents indicated that some technical criteria were confusing, and in need of context. Our findings suggest that development of guidelines regarding management of IF include multiple stakeholders' perspectives and be based on a common language.

Empowering Parents of Pediatric Surgical Oncology Patients Through Collaborative Engagement with Surgeons.

BACKGROUND: Ninety percent of parents of pediatric oncology patients report distressing, emotionally burdensome healthcare interactions. Assuring supportive, informative treatment discussions may limit parental distress. Here, we interview parents of pediatric surgical oncology patients to better understand parental preferences for surgical counseling. METHODS: We interviewed 10 parents of children who underwent solid tumor resection at a university-based, tertiary children's hospital regarding their preferences for surgical discussions. Thematic content analysis of interview transcripts was performed using deductive and inductive methods. RESULTS: Three main themes were identified: (1) the emotional burden of a pediatric cancer diagnosis; (2) complexities of treatment discussions; (3) collaborative engagement between parents and surgeons. Within the collaborative engagement theme, there were four sub-themes: (1) variable informational needs; (2) parents as advocates; (3) parents as gatekeepers of information delivery to their children, family, friends, and community; (4) parental receptivity to structured guidance to support treatment discussions. Two cross-cutting themes were identified: (1) perception that no treatment decision needed to be made regarding surgery and (2) reliance on diverse support resources. CONCLUSIONS: Parents feel discussions with surgeons promote informed involvement in their child's care, but they recognize that there may be few decisions to make regarding surgery. Even when parents perceive that there are there are no decisions to make, they prioritize asking questions to advocate for their children. The emotional burden of a cancer diagnosis often prevents parents from knowing what questions to ask. Merging this data with our prior pediatric surgeon interviews will facilitate development of a novel decision support tool that can empower parents to ask meaningful questions. LEVEL OF EVIDENCE: III.

"Reading the room:" A qualitative analysis of pediatric surgeons' approach to clinical counseling.

BACKGROUND: In our prior analysis of parental preferences for discussions with pediatric surgeons, we identified that parents prefer more guidance from surgeons when discussing cancer surgery, emergency surgery, or surgery for infants, and they prefer to engage surgeons by asking questions. In this study, we investigate surgeon preferences for decision making discussions in pediatric surgery. METHODS: We conducted a thematic content analysis of interviews of pediatric surgeons regarding their preferences for discussing surgery with parents. Board certified/board eligible pediatric surgeons who had been in practice for at least one year and spoke English were eligible. Fifteen surgeons were invited, and twelve 30-minute semi-structured interviews were completed (80%). Interviews were recorded and transcribed. Thematic content analysis was performed using deductive and inductive methods. RESULTS: Data saturation was achieved after 12 interviews [6 women (50%), median years in practice 6.25, 10 in academic practice (83%), 8 from Midwest (67%)]. 5 themes emerged: (1) Collaboration to promote parental engagement; (2) "Cancer is distinct but not unique;" (3) "Read the room:" tailoring discussions to specific parental needs; (4) Perceived role of the surgeon; (5) Limited experience with decision support tools in pediatric surgery. CONCLUSIONS: Pediatric surgeons prefer a collaborative approach to counseling that engages parents through education. They prioritize tailoring discussions to meet parental needs. Few have utilized decision support tools, however most expressed interest. Insight gained from our work will guide development of a decision support tool that empowers parental participation in counseling for pediatric surgery. LEVEL OF EVIDENCE: III.

Individual genetic and genomic research results and the tradition of informed consent: exploring US review board guidance.

BACKGROUND: Genomic research is challenging the tradition of informed consent. Genomic researchers in the USA, Canada and parts of Europe are encouraged to use informed consent to address the prospect of disclosing individual research results (IRRs) to study participants. In the USA, no national policy exists to direct this use of informed consent, and it is unclear how local institutional review boards (IRBs) may want researchers to respond. OBJECTIVE AND METHODS: To explore publicly accessible IRB websites for guidance in this area, using summative content analysis. FINDINGS: Three types of research results were addressed in 45 informed consent templates and instructions from 20 IRBs based at centres conducting genomic research: (1) IRRs in general, (2) incidental findings (IFs) and (3) a broad and unspecified category of 'significant new findings' (SNFs). IRRs were more frequently referenced than IFs or SNFs. Most documents stated that access to IRRs would not be an option for research participants. These non-disclosure statements were found to coexist in some documents with statements that SNFs would be disclosed to participants if related to their willingness to participate in research. The median readability of template language on IRRs, IFs and SNFs exceeded a ninth-grade level. CONCLUSION: IRB guidance may downplay the possibility of IFs and contain conflicting messages on IRR non-disclosure and SNF disclosure. IRBs may need to clarify why separate IRR and SNF language should appear in the same consent document. The extent of these issues, nationally and internationally, needs to be determined.

Through students' eyes: ethical and professional issues identified by third-year medical students during clerkships.

BACKGROUND: Education in ethics and professionalism should reflect the realities medical students encounter in the hospital and clinic. METHOD: We performed content analyses on Case Observation and Assessments (COAs) written by third-year medical students about ethical and professional issues encountered during their internal medicine and paediatrics clinical clerkships. RESULTS: A cohort of 141 third-year medical students wrote 272 COAs. Content analyses identified 35 subcategories of ethical and professional issues within 7 major domains: decisions regarding treatment (31.4%), communication (21.4%), professional duties (18.4%), justice (9.8%), student-specific issues (5.4%), quality of care (3.8%), and miscellaneous (9.8%). CONCLUSIONS: Students encountered a wide variety of ethical and professional issues that can be used to guide pre-clinical and clinical education. Comparison of our findings with results from similar studies suggests that the wording of an assignment (specifying "ethical" issues, "professional" issues, or both) may influence the kinds of issues students identify in their experience-based clinical narratives.

Communicating With Diverse Patients About Participating in a Biobank: A Randomized Multisite Study Comparing Electronic and Face-to-Face Informed Consent Processes.

Some individuals' understanding of informed consent (IC) information may improve with electronic delivery, but others may benefit from face-to-face (F2F). This randomized, multisite study explores how individuals from diverse backgrounds understand electronic IC documents versus F2F, their confidence in understanding, and enrollment in research. A total of 501 patients at two U.S. biobanks with diverse populations participated. There were no overall differences between electronic and F2F understanding, but F2F predicted higher confidence in understanding and enrollment. Ethnicity and a higher educational level predicted higher understanding and confidence. Study findings suggest that electronic consent may lead to better understanding for non-Hispanic patients of higher socioeconomic status. F2F processes may lead to better understanding and higher enrollment of patients from Hispanic and lower socioeconomic levels. Researchers should carefully consider how they implement electronic IC processes and whether to maintain an F2F process to better address the needs and limitations of some populations.