Comparing neonatal morbidity and mortality estimates across specialty in periviable counseling

Objective To describe and compare estimates of neonatal morbidity and mortality communicated by neonatologists and obstetricians in simulated periviable counseling encounters. Methods A simulation-based study of 16 obstetricians (OBs) and 15 neonatologists counseling standardized patients portraying pregnant women with ruptured membranes at 23 weeks gestation. Two investigators tabulated all instances of numerically-described risk estimates across individuals and by specialty. Results Overall, 12/15 (80%) neonatologists utilized numeric estimates of survival; 6/16 (38%) OBs did. OBs frequently deferred the discussion of “exact numbers” to neonatologists. The twelve neonatologists provided 13 unique numeric estimates, ranging from 3% to 50% survival. Half of those neonatologists provided 2-3 different estimates in a single encounter. By comparison, six OBs provided 4 unique survival estimates (“50%”, “30-40%”, “1/3-1/2”, “<10%”). Only 2/15 (13%) neonatologists provided numeric estimates of survival without impairment. None of the neonatologists used the term ‘intact’ survival, while 5 OBs did. Three neonatologists gave numeric estimates of long-term disability and one OB did. Conclusion We found substantial variation in estimates and noteworthy omissions of discussions related to long-term morbidity. Across specialties, we noted inconsistencies in the use and meaning of terms like ‘intact survival.’ More tools and training are needed to improve the quality and consistency of periviable risk-communication

A Pilot Study of Neonatologists' Decision-Making Roles in Delivery Room Resuscitation Counseling for Periviable Births

BACKGROUND: Relatively little is known about neonatologists' roles in helping families navigate the difficult decision to attempt or withhold resuscitation for a neonate delivering at the threshold of viability. Therefore, we aimed to describe the "decision-making role" of neonatologists in simulated periviable counseling sessions. METHODS: We conducted a qualitative content analysis of audio-recorded simulation encounters and post-encounter debriefing interviews collected as part of a single-center simulation study of neonatologists' resuscitation counseling practices in the face of ruptured membranes at 23 weeks gestation. We trained standardized patients to request a recommendation if the physician presented multiple treatment options. We coded each encounter for communication behaviors, applying an adapted, previously developed coding scheme to classify physicians into four decision-making roles (informative, facilitative, collaborative, or directive). We also coded post-simulation debriefing interviews for responses to the open-ended prompt: "During this encounter, what did you feel was your role in the management decision-making process?" RESULTS: Fifteen neonatologists (33% of the division) participated in the study; audio-recorded debriefing interviews were available for 13. We observed 9 (60%) take an informative role, providing medical information only; 2 (13%) take a facilitative role, additionally eliciting the patient's values; 3 (20%) take a collaborative role, additionally engaging the patient in deliberation and providing a recommendation; and 1 (7%) take a directive role, making a treatment decision independent of the patient. Almost all (10/13, 77%) of the neonatologists described their intended role as informative. CONCLUSIONS: Neonatologists did not routinely elicit preferences, engage in deliberation, or provide treatment recommendations-even in response to requests for recommendations. These findings suggest there may be a gap between policy recommendations calling for shared decision making and actual clinical practice

Patient Communication Training Skills for High School Health and Wellness Classes

poster abstractPhysicians are now trained in interpersonal skills intended to improve clinical outcomes and patient satisfaction while reducing provider burnout and decreasing the likelihood of litigation. However, shared decision-making by nature necessitates the need for patient communication training as well. Indiana requires a Health and Wellness class for high school graduation; this is the ideal time to reach young people - before they become adult patients navigating their own healthcare. Funded by an IU Heath Values Grant for Education, this project utilizes cutting edge technology in the form of a multimedia module that can be integrated into existing Health and Wellness classes. The award-winning Herron High School, ranked in the top 5% of schools nationwide by Newsweek, U.S. News and the Washington Post, has agreed to explore the application as the pilot school for this project. The interactive web-based module is designed to reach the student population as four learning units following the successful PACE adult patient training design by Ohio State health communication scholar, Dr. Don Cegala. Patient/provider exchanges filmed at University Hospital illustrate modeling of the typical, passive mode of communication followed by the effective mode of communication using the PACE model of patient training. The Medical Communication Competence Scale is applied as a pretest/posttest for check for attitudinal changes and a series of open feedback questions are available for student responses. This project is a work in progress and data analysis is under review

Parental Perspectives on Decision-making about Hypospadias Surgery

Introduction Many parents who choose hypospadias repair for their son experience decisional conflict and regret. The utilization of a shared decision-making process may address the issue of decisional conflict and regret in hypospadias repair by engaging both parents and physicians in decision-making. Objective The objective of this study was to develop a theoretical framework of the parental decision-making process about hypospadias surgery to inform the development of a decision aid. Study Design We conducted semi-structured interviews with parents of children with hypospadias to explore their role as proxy-decision-makers, inquiring about their emotions/concerns, informational needs and external/internal influences. We conducted interviews until no new themes were identified, analyzing them iteratively using open, axial and selective coding. The iterative approach entails a cyclical process of conducting interviews and analyzing transcripts while the data collection process is ongoing. This allows the researcher to make adjustments to the interview guide as necessary based on preliminary data analysis in order to explore themes that emerge from early interviews with parents. We used grounded theory methods to develop an explanation of the surgical decision-making process. Results We interviewed 16 mothers and 1 father of 7 preoperative and 9 postoperative patients (n=16) with distal (8) and proximal (8) meatal locations. We identified four stages of the surgical decision-making process: 1) processing the diagnosis, 2) synthesizing information, 3) processing emotions and concerns and 4) finalizing the decision (Extended Summary Figure). We identified core concepts in each stage of the decision-making process. Primary concerns included anxiety/fear about the child not waking up from anesthesia and their inability to be present in the operating room. Parents incorporated information from the Internet, medical providers and their social network as they sought to relieve confusion and anxiety while building trust/confidence in their child’s surgeon. Discussion The findings of this study contribute to our understanding of decision-making about hypospadias surgery as a complex and multi-faceted process. The overall small sample size is typical and expected for qualitative research studies. The primary limitation of the study, however, is the underrepresentation of fathers, minorities and same-sex couples. Conclusions This study provides an initial framework of the parental decision-making process for hypospadias surgery that will inform the development of a decision aid. In future stages of decision aid development, we will focus on recruitment of fathers, minorities and same-sex couples in order to enrich the perspectives of our work

"Doctor, what would you do?": physicians' responses to patient inquiries about periviable delivery

OBJECTIVE: To qualitatively assess obstetricians' and neonatologists' responses to standardized patients (SPs) asking "What would you do?" during periviable counseling encounters. METHODS: An exploratory single-center simulation study. SPs, portraying a pregnant woman presenting with ruptured membranes at 23 weeks, were instructed to ask, "What would you do?" if presented options regarding delivery management or resuscitation. Responses were independently reviewed and classified. RESULTS: We identified five response patterns: 'Disclose' (9/28), 'Don't Know' (11/28), 'Deflect' (23/28), 'Decline' (2/28), and 'Ignore' (2/28). Most physicians utilized more than one response pattern (22/28). Physicians 'deflected' the question by: restating or offering additional medical information; answering with a question; evoking a hypothetical patient; or redirecting the SP to other sources of support. When compared with neonatologists, obstetricians (40% vs. 15%) made personal or professional disclosures more often. Though both specialties readily acknowledged the importance of values in making a decision, only one physician attempted to elicit the patient's values. CONCLUSION: "What would you do?" represented a missed opportunity for values elicitation. Interventions are needed to facilitate values elicitation and shared decision-making in periviable care. PRACTICE IMPLICATIONS: If physicians fail to address patients' values and goals, they lack the information needed to develop patient-centered plans of care

Evaluating Shared Decision Making in Trial of Labor After Cesarean Counseling Using Objective Structured Clinical Examinations

Introduction Although shared decision making (SDM) is optimal for trial of labor after cesarean (TOLAC) counseling, resources to assess residents' clinical competency and communication skills are lacking. We addressed this gap by developing and testing an objective structured clinical examination (OSCE) to evaluate whether learners were able to use SDM in TOLAC counseling. Methods We created three simulation scenarios with increasing complexity to assess the skills of residents in their first, second, or third postgraduate year in using SDM in TOLAC counseling. All cases involved a standardized patient requesting a TOLAC consultation. Residents were provided with a medical history and instructed to counsel and develop a care plan. A 10-item scoring rubric was used, and each item was rated 0 (absent), 1 (partial), or 2 (complete). Three coders independently rated the encounters; discrepancies were resolved by consensus. Results Over 3 years, 39 residents participated in 60 OSCE encounters. The majority provided complete discussions of the clinical issue (93%), chances of success (72%), and maternal and fetal risks (100% and 85%, respectively) but obtained partial assessments of understanding (78%). Discussions of benefits were typically absent, with the exception of the maternal benefits (47%). More than 40% of residents did not discuss the patient's goals, 53% lacked discussion of uncertainties related to TOLAC, and half failed to explore the patient's preference, with most deferring a decision to a future encounter. Discussion Residents consistently discussed diagnosis, prognosis, and maternal risks yet infrequently addressed goals and preferences—two critical elements of SDM

Community Engagement of Adolescents in the Development of a Patient-Centered Outcomes Tool for Adolescents with a History of Hypospadias Repair

Introduction Hypospadias may lead to long-term issues with urination, sexual function and psychosocial well-being. Limited evidence exists regarding the healthcare communication preferences of male adolescents regarding sensitive topics. Objective The purpose of this qualitative study was to explore the healthcare communication preferences of male adolescents regarding sensitive topics (e.g. urinary and sexual issues) and engage them in in the initial stages of development a patient-centered outcomes tool for adolescents with a history of hypospadias repair. Study Design A multi-disciplinary team with communication design expertise, pediatric urology experts, and health services researchers developed a self-reported toolkit for adolescent patients who had hypospadias repair as children. The toolkit featured short writing/diagramming exercises and scales to facilitate participant reflections about genital appearance, urination, sexual function and psychosocial well-being. We recruited students from two local high schools for two focus groups to obtain feedback about the usability/acceptability of the toolkit’s appearance/content. We inquired about language preferences and preferred format and/or setting for sharing sensitive information with researchers. The focus groups were audio recorded, professionally transcribed, checked for accuracy and analyzed by two coders using qualitative content analysis. Major themes and subthemes were identified and representative quotes were selected. Results We conducted two focus groups in January 2018 with 33 participants, ages 14-18. Participants preferred language that would make patients feel comfortable as well as serious, clinical language rather than slang terms/sexual humor (Extended Summary Table). They recommended avoidance of statements implying that something is wrong with a patient or statements that would pressure the patient into providing answers. They suggested fill-in-the-blank and open-ended responses to encourage freedom of expression and colorful graphics to de-emphasize the test-like appearance of the toolkit. Most participants preferred a toolkit format to a one-on-one interview to discuss sensitive topics such as urinary or sexual issues. Participants would prefer either a male interviewer or would like to have a choice of interviewer gender for individual qualitative interviews, and they recommended a focus group leader with a history of hypospadias repair. Discussion This study provides a rich description of a group of male high school students’ experiences with healthcare providers and researchers. Its qualitative design limits generalizability and our findings may not be similar to adolescents with a history of hypospadias repair. Conclusion We used focus group feedback on the toolkit prototype to refine the tool for use in a future study of adolescents with history of hypospadias repair

Consulting “Dr. YouTube”: an objective evaluation of hypospadias videos on a popular video-sharing website

Introduction: Parents who make decisions about hypospadias repair for their child may seek information from online platforms such as YouTube. Objective: The purpose of this study is to evaluate the health literacy demand of hypospadias videos on YouTube using the Patient Education Materials Assessment Tool for Audiovisual Materials (PEMAT-A/V). Study design: We performed a YouTube search using the term "hypospadias," limiting results to the first 100 videos. We excluded videos that were 20 min and videos that were not in English or did not include subtitles. Two evaluators independently examined videos and determined PEMAT-A/V scores for understandability and actionability (i.e., ability to identify actions the viewer can take). Videos with scores >70% are understandable or actionable. The inter-rater reliability (kappa) and intraclass correlation coefficient (ICC) of PEMAT scores were calculated. Bivariate and multivariable linear regression models assessed the association of video characteristics with respective scores. Results: Of the 100 videos that were identified on YouTube, 47 (47%) were excluded leaving 53 for analysis: 14 were >20 min, 14 were <1 min, 9 had no audio or subtitles, 7 were not in English, 1 was a duplicate, 1 was unrelated to hypospadias, and 1 was deleted at the time of data analysis. Three (5.6%) were understandable (mean score 54.5%, standard deviation (SD) 14.9) and eight (15.1%) were actionable (mean score 21.8%, SD 16.6) (Extended Summary Figure). Kappa values ranged from 0.4 to 1. The ICC's were 0.55 and 0.33 for understandability and actionability, respectively. In the bivariate analysis, mean understandability scores were significantly higher for English language videos (p = 0.04), videos with animation (p = 0.002), and those produced by industry (p = 0.02). In the multivariable analysis, mean understandability scores were significantly higher for "expert testimonial" or "other" video types after adjusting for graphics type and overall tone (p = 0.04). Mean understandability scores were also significantly higher for videos with animation after adjusting for video type and overall tone (p = 0.01). Mean actionability scores were significantly higher for videos with a negative tone (p = 0.01). Discussion: The vast majority of hypospadias-related YouTube content is not appropriate for users with low health literacy although certain types of videos, such those with animation and expert testimonials, scored higher on understandability than other types. Conclusion: Due to the lack of sufficient online informational content regarding hypospadias, we plan to engage parents of sons with hypospadias in the development of high-quality patient educational materials about hypospadias

Patient Preferences Matter: A Qualitative Inquiry with Patients about the Surgical Decision for Osteosarcoma in the Lower Extremity

Purpose: The experience of surgical patient decision-making for amputation, rotationplasty, or limb salvage surgery for the lower extremity was explored with osteosarcoma survivors and parents. Issues and patient concerns were examined prospectively in Facebook posts and retrospectively in personal interviews. Recommendations were sought for the development of a decision aid. Methods: A qualitative inquiry was conducted in two studies: 1) a content analysis of 15 Facebook posts on the Osteosarcoma and Ewing’s Sarcoma Support Group about the surgical decision, and 2) a narrative analysis of 20 interviews with survivors and parents about their lived experience. The interview guide was informed by a knowledge translation theoretical model. In-person or video interviews included 29 parents or adolescent-young adults between the ages of 14–71 across 15 states. Results: Participants were concerned about making the best decision for themselves or their child. Having little time to make the decision contributes to feeling overwhelmed and uninformed. The lack of information about options, potential limitations, prosthetic needs, and long-term functional outcomes impacts the decision-making process. Resources for finding information are limited. Shared decision-making approaches were preferred though many decisions were made by the surgeon. Patients felt unprepared for complications encountered after limb salvage. Conclusions: Limb salvage surgery remains the gold standard for most providers; participants felt there was a bias on the surgeon’s part for salvage. Potential complications and uncertainties of each option were largely omitted in consultations; information about living with a prosthesis is an unmet need for decision-making. The decision affected their quality of life in ways they did not anticipate, resulting in additional decisions. Implications: The findings of this study can be used in medical education for orthopedic surgeons to understand the long-term outcomes of limb salvage surgery. Patient preferences matter in the decision and patients who are involved in the decision are more satisfied if they are prepared for the unknown and potential complications. Recommendations for a decision aid include an online format, content that includes a discussion of uncertainties as well as complications of each option, patient stories for long-term outcomes, and resources for psychosocial support