Mode of delivery in the context of periviable birth: informed deference and shared decision-making.

OBJECTIVE: To qualitatively evaluate women's perspectives on shared decision-making for periviable (22-25 weeks' gestational age) mode of delivery (MOD). STUDY DESIGN: Interviews were conducted at two Midwestern academic hospitals with 30 women hospitalized for threatened periviable delivery between September 2016 and January 2018. Prior to delivery (T1) and at 3-months postpartum (T2), MOD-related decision-making was explored using prompts. Interviews were coded and analyzed using NVivo 12. RESULT: The majority of women perceived the MOD options as cesarean section or vaginal delivery. Most ultimately preferred "whatever's best for baby." Understanding of MOD risks was limited, and physicians recommended each option equally. Sixteen participants perceived themselves as decision-makers at T1, while at T2, only nine participants identified themselves as such. CONCLUSION: Informed deference is introduced as a novel concept in the setting of periviable MOD decision-making, whereby the mother defers decisional authority to the provider, the baby, a higher power, or the circumstance itself.

Evaluating Shared Decision-Making in Postpartum Contraceptive Counseling Using Objective Structured Clinical Examinations.

Background: Shared decision-making (SDM) may support widespread uptake of progestin-containing long-acting reversible contraceptives in the immediate postpartum period. We piloted an Objective Structured Clinical Examination (OSCE) to evaluate first-year obstetrics and gynecology resident physicians' use of SDM in postpartum contraception counseling. Methods: As part of their 2015 and 2016 OSCEs, first-year OB/GYN residents were instructed to provide contraceptive counseling to a Standardized Patient (SP) portraying a 29-year-old postpartum patient seen during rounds on the morning following her delivery. Three investigators independently scored each resident encounter using a 10-item rubric adapted from a 9-item SDM measure and assigned scores of 0 (absent), 1 (partial), or 2 (complete). Each encounter was video and audio recorded, then transcribed for qualitative analysis. Descriptive statistics was produced using SPSS version 24. Results: Eighteen residents participated. The majority (78%) discussed contraceptive options and timing of initiation. Nearly 33% elicited factors most important to the SP in influencing her preference. Only 6% discussed the benefits of exclusive breastfeeding, and few addressed the uncertainty of progesterone on milk supply and production. Conclusion: Although residents conveyed ample clinical information, the vast majority did not discuss elements of SDM, such as her preferences, values, and goals for future fertility and breastfeeding. Our work revealed that critical elements of SDM are often not explored and deliberated by resident physicians. Trainings (e.g., OSCEs) are needed to equip residents with effective communication skills to facilitate more SDM in postpartum contraceptive care.

'Expert advice' for developing decision support: A qualitative study of women who have experienced periviable birth.

OBJECTIVE: To elicit advice from women who have experienced periviable birth to optimize periviable counseling, care, and decision support. METHODS: We conducted a qualitative study among 21 women who experienced periviable deliveries within three years. Using semi-structured interviews, we asked participants what advice they would offer providers and women/families based on their own experiences. Interviews were independently coded by three trained coders. RESULTS: For providers: Participants said to be 'patient' and appreciate the novelty of each family's experience. They suggested being 'realistic' and 'factual'; favored joint OB/Neonatology counseling; and encouraged providers to attend to maternal guilt and self-blame. For women/families: They encouraged asking questions, avoiding the internet, and finding joy in whatever time they had with their child. For hospitals: They advocated for changes to facilitate more mother/baby contact. CONCLUSION: Providers can support parents by presenting facts, showing empathy and patience, and reassuring women that they are not to blame. This study highlights patient perspectives to improve interactions with providers, optimize women/families' experiences, and advance efforts toward developing patient-centered systems of periviable care. PRACTICE IMPLICATIONS: Women who experience periviable birth desire counseling that is empathetic and 'realistic', encouragement to ask questions, and reassurance that outcomes are not their fault.

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.

Knowledge gaps and information seeking by parents about hypospadias.

INTRODUCTION: Parents making complex decisions about hypospadias surgery may experience anxiety and uncertainty related to multiple sources of information with questionable reliability and limited relevance to their concerns. OBJECTIVE: The purpose of this study was to identify knowledge gaps, information-seeking behaviors, and informational needs of parents making decisions about hypospadias surgery as an initial step in the development of a hypospadias decision aid. STUDY DESIGN: We conducted semi-structured interviews with English-speaking parents (≥18 years of age) of children with hypospadias, inquiring about gaps in their knowledge, information-seeking behaviors, and perceived informational needs (Extended Summary Table). We conducted interviews until no new themes were identified, analyzing them iteratively using open, axial, and selective coding. We used grounded theory methods to develop an explanation of the information-seeking process about hypospadias surgery. RESULTS: Of the 43 eligible parents, 16 mothers and 1 father (39.5%) of 16 patients participated: 7 preoperative and 9 postoperative with distal (8) and proximal (8) meatal locations. Parents were aged 21-43: 15 Caucasians and 2 African-Americans. Educational backgrounds and marital status varied across subjects. We identified five categories of knowledge gaps relating to hypospadias surgery: 1) epidemiology, 2) timing/technique, 3) perioperative experience, 4) long-term cosmetic outcome, and 5) long-term risk of complications. Information-seeking behaviors included searching the internet, discussing hypospadias with the child's pediatrician and/or urologist, and obtaining information from their social network. Most parents sought information online prior to and/or after consultation with the urologist, from parent blogs/forums, medical school/hospital websites, journal articles, and medical databases. Perceived informational needs included clear and reliable information online, images of mild degrees of hypospadias, and images of repaired hypospadias cases. According to the parents, video testimonials from other parents would help them relate to others in their social network and build confidence about the surgical process. DISCUSSION: The findings of this study contribute to our understanding of parental decision-making about hypospadias surgery by highlighting specific knowledge gaps and informational needs for inclusion in a decision aid. Study limitations include a small sample size that is typical and expected for qualitative research studies and the underrepresentation of fathers, minorities, and same-sex couples. CONCLUSIONS: The Internet is the primary source of information most parents use to address knowledge gaps about hypospadias. Parents expressed concerns about the reliability and clarity of information and identified informational needs including parent testimonials and a wide variety of hypospadias images for inclusion in a decision aid.

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 <1 min or >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.

Evaluating shared decision-making in periviable counseling using objective structured clinical examinations.

OBJECTIVE: To develop and test an Objective Structured Clinical Examination to evaluate the use of shared decision-making (SDM) in periviable counseling among fourth-year OB/GYN residents. METHODS: Residents counseled a standardized patient presenting with preterm premature rupture of membranes at 23 weeks' gestation. Braddock's 9-item measure of SDM was adapted to a 10-item scoring rubric; rating each: 0 (absent), 1 (partial), or 2 (complete). RESULTS: Twenty-six residents participated. All provided "complete" discussions of the clinical issue and "complete" or 'partial' ratings for informing the woman of her prognosis (62 and 38%, respectively) and addressing her role in decision-making (42 and 50%). Discussions of her goals and preferences were often absent (69 and 62%). Only 42% discussed uncertainties. CONCLUSION: Critical elements of SDM related to a woman's values, goals and preferences were not explored when counseling about periviable delivery. Training in SDM is needed to advance communication skills for complex clinical decision-making.

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.

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 12 neonatologists provided 13 unique numeric estimates, ranging from 3% to 50% survival. Half of those neonatologists provided two to three different estimates in a single encounter. By comparison, six OBs provided four 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 five 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.

"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.