Prognostic Discordance Among Parents and Physicians Caring for Infants with Neurologic Conditions.

OBJECTIVE: To determine the frequency, degree, and nature of prognostic discordance between parents and physicians caring for infants with neurologic conditions. STUDY DESIGN: In this observational cohort study, we enrolled parents and physicians caring for infants with neurologic conditions in advance of a family conference. Parent-physician dyads completed a postconference survey targeting expected neurologic outcomes across 3 domains (motor, speech, and cognition) using a 6-point scale. Prognostic discordance was defined as a difference of ≥2 response options and was considered moderate (difference of 2-3 response options) or high (difference of 4-5 response options). Responses were categorized as differences in belief and/or differences in understanding using an existing paradigm. RESULTS: Forty parent-physician dyads of 28 infants completed surveys. Parent-physician discordance about prognosis occurred in ≥1 domain in the majority of dyads (n = 28/40, 70%). Discordance was generally moderate in degree (n = 23/28, 82%) and occurred with similar frequency across all domains. Of parent-physician dyads with discordance, the majority contained a difference in understanding in at least 1 domain (n = 25/28, 89%), while a minority contained a difference of belief (n = 6/28, 21%). When discordance was present, parents were typically more optimistic in their predictions compared with physicians (n = 25/28, 89%). CONCLUSIONS: Differing perceptions about the prognosis of critically ill infants are common and due to differences in both understanding and belief. These findings can be used to develop targeted interventions to improve prognostic communication.

Patient-Reported Outcomes of Breast Reconstruction: Does the Quality of Decisions Matter?

BACKGROUND: Little is known about how the quality of decisions influences patient-reported outcomes (PROs). We hypothesized that higher decision quality for breast reconstruction would be independently associated with better PROs. METHODS: We conducted a prospective cohort study of patients undergoing mastectomy with or without reconstruction. Patients were enrolled before surgery and followed for 18 months. We used BREAST-Q scales to measure PROs and linear regression models to explore the relationship between decision quality (based on knowledge and preference concordance) and PROs. Final models were adjusted for baseline BREAST-Q score, radiation, chemotherapy, and major complications. RESULTS: The cohort included 101 patients who completed baseline and 18-month surveys. Breast reconstruction was independently associated with higher satisfaction with breasts (ß = 20.2, p = 0.0002), psychosocial well-being (ß = 14.4, p = 0.006), and sexual well-being (ß = 15.7, p = 0.007), but not physical well-being. Patients who made a high-quality decision had similar PROs as patients who did not. Among patients undergoing mastectomy with reconstruction, higher decision quality was associated with lower psychosocial well-being (ß = -14.2, p = 0.01). CONCLUSIONS: Breast reconstruction was associated with better PROs in some but not all domains. Overall, making a high-quality decision was not associated with better PROs. However, patients who did not have reconstruction had a trend toward better well-being after making a high-quality decision, whereas patients who did have reconstruction had poorer well-being after making a high-quality decision. Additional research on the relationship between decision quality and PROs is needed.

Prognostic Discussion for Infants with Neurologic Conditions: Qualitative Analysis of Family Conferences.

OBJECTIVE: We characterize the content and role of prognostic discussion for infants with neurologic conditions. METHODS: In this descriptive qualitative study, we prospectively enrolled infants (age < 1 year) in the intensive care unit with a neurologic condition anticipated to have ≥1 family conference about prognosis or goals of care. We audiorecorded family conferences as they occurred. We used a rapid-cycle qualitative approach to identify and refine themes. RESULTS: Forty infants and 61 parents were enrolled; 68 family conferences occurred for 24 infants. The majority of infant cases (n = 23/24, 96%) and conferences (n = 64/68, 94%) included discussion of neurologic prognosis. Common infant diagnoses included prematurity (n = 12, 52%), genetic conditions (n = 9, 35%), and brain malformations (n = 7, 30%). We identified 2 themes relating to the characterization of the infant's prognosis: (1) predictions of impairment and (2) rationale for prognostic predictions. We identified 3 themes characterizing the role of prognostic discussion: (1) aligning parent and clinician understanding of infant outcome, (2) influencing decision-making, and (3) preparing for life at home. We identified 2 themes characterizing discussion of prognostic uncertainty: (1) multilayered types of uncertainty and (2) holding space for hope alongside uncertainty. INTERPRETATION: In this cohort of infants with neurologic conditions and their parents, we identified salient themes characterizing the content and role of discussion about neurologic outcome. Our findings highlight that prognostic discussion focuses on anticipated impairments, informs decision-making, and helps families prepare for home life. Future work should characterize whether these findings align with parent preferences for prognostic disclosure. ANN NEUROL 2022;92:699-709.

Workplace Harassment, Cyber Incivility, and Climate in Academic Medicine.

Importance: The culture of academic medicine may foster mistreatment that disproportionately affects individuals who have been marginalized within a given society (minoritized groups) and compromises workforce vitality. Existing research has been limited by a lack of comprehensive, validated measures, low response rates, and narrow samples as well as comparisons limited to the binary gender categories of male or female assigned at birth (cisgender). Objective: To evaluate academic medical culture, faculty mental health, and their relationship. Design, Setting, and Participants: A total of 830 faculty members in the US received National Institutes of Health career development awards from 2006-2009, remained in academia, and responded to a 2021 survey that had a response rate of 64%. Experiences were compared by gender, race and ethnicity (using the categories of Asian, underrepresented in medicine [defined as race and ethnicity other than Asian or non-Hispanic White], and White), and lesbian, gay, bisexual, transgender, queer (LGBTQ+) status. Multivariable models were used to explore associations between experiences of culture (climate, sexual harassment, and cyber incivility) with mental health. Exposures: Minoritized identity based on gender, race and ethnicity, and LGBTQ+ status. Main Outcomes and Measures: Three aspects of culture were measured as the primary outcomes: organizational climate, sexual harassment, and cyber incivility using previously developed instruments. The 5-item Mental Health Inventory (scored from 0 to 100 points with higher values indicating better mental health) was used to evaluate the secondary outcome of mental health. Results: Of the 830 faculty members, there were 422 men, 385 women, 2 in nonbinary gender category, and 21 who did not identify gender; there were 169 Asian respondents, 66 respondents underrepresented in medicine, 572 White respondents, and 23 respondents who did not report their race and ethnicity; and there were 774 respondents who identified as cisgender and heterosexual, 31 as having LGBTQ+ status, and 25 who did not identify status. Women rated general climate (5-point scale) more negatively than men (mean, 3.68 [95% CI, 3.59-3.77] vs 3.96 [95% CI, 3.88-4.04], respectively, P < .001). Diversity climate ratings differed significantly by gender (mean, 3.72 [95% CI, 3.64-3.80] for women vs 4.16 [95% CI, 4.09-4.23] for men, P < .001) and by race and ethnicity (mean, 4.0 [95% CI, 3.88-4.12] for Asian respondents, 3.71 [95% CI, 3.50-3.92] for respondents underrepresented in medicine, and 3.96 [95% CI, 3.90-4.02] for White respondents, P = .04). Women were more likely than men to report experiencing gender harassment (sexist remarks and crude behaviors) (71.9% [95% CI, 67.1%-76.4%] vs 44.9% [95% CI, 40.1%-49.8%], respectively, P < .001). Respondents with LGBTQ+ status were more likely to report experiencing sexual harassment than cisgender and heterosexual respondents when using social media professionally (13.3% [95% CI, 1.7%-40.5%] vs 2.5% [95% CI, 1.2%-4.6%], respectively, P = .01). Each of the 3 aspects of culture and gender were significantly associated with the secondary outcome of mental health in the multivariable analysis. Conclusions and Relevance: High rates of sexual harassment, cyber incivility, and negative organizational climate exist in academic medicine, disproportionately affecting minoritized groups and affecting mental health. Ongoing efforts to transform culture are necessary.

Definitely, Maybe: Helping Patients Make Decisions about Surgery When Prognosis Is Uncertain.

AbstractThe sudden onset of severe traumatic brain injury (sTBI) is an event suffered by millions of individuals each year. Regardless of this frequency in occurrence, accurate prognostication remains difficult to achieve among physicians. There are many variables that affect this prognosis. Physicians are expected to assess the clinical indications of the brain injury while considering other factors such as patient quality of life, patient preferences, and environmental context. However, this lack of certainty in prognosis can ultimately affect treatment recommendations and prompt clinical ethical issues at the bedside, as it leaves room for physician bias and interpretation. In this article, we introduce data on neurosurgeon values that may shed light on the process physicians and patients involved in sTBI undergo. In doing so, we highlight the many nuances in decision-making for patients suffering from sTBI and discuss potential solutions to better patient-physician or surrogate-physician interactions.

Decisional Satisfaction, Regret, and Conflict Among Parents of Infants with Neurologic Conditions.

OBJECTIVE: To characterize decisional satisfaction, regret, and conflict among parents of critically ill infants with neurologic conditions. STUDY DESIGN: In this prospective cohort study, we enrolled parents of infants with neurologic conditions in the intensive care unit (ICU). Hospital discharge surveys included the validated Family Satisfaction with the ICU (FS-ICU) decision making subscale, Decision Regret Scale (DRS), and Decisional Conflict Scale (DCS). We defined high satisfaction with decision making as an FS-ICU score ≥75, high decisional regret/conflict as DRS/DCS score >25, and within-couple disagreement as a difference of at least 25 points between scores. RESULTS: We enrolled 61 parents of 40 infants (n = 40 mothers, n = 21 fathers); 35 mothers and 15 fathers completed surveys. Most mothers reported high satisfaction with decision making (27 of 35; 77%) and low decision regret (28 of 35; 80%); 40% (14 of 35) reported high decisional conflict. Mothers and fathers reported higher decisional conflict in the domains of uncertainty and values clarity compared with the domain of effective decision making (Bonferroni-corrected P < .05). There were no differences in decision outcomes between paired mothers and fathers; however, within any given couple, there were numerous instances of disagreement (7 of 15 for decision regret and 5 of 15 for decisional conflict). CONCLUSIONS: Many parents experience decisional conflict even if they ultimately have high satisfaction and low regret, underscoring the need for decision aids targeting uncertainty and values clarity. Couples frequently experience different levels of decisional regret and conflict.

Two Minds, One Patient: Clearing up Confusion About "Ambivalence".

Patients who experience difficulty making medical decisions are often referred to as "ambivalent." However, the current lack of attention to the nuances between a cluster of phenomena that resemble ambivalence means that we are not always recognizing what is really going on with a patient. Importantly, different kinds of "ambivalence" may call for different approaches. In this paper, we present a taxonomy of ambivalence-related phenomena, provide normative analysis of some of the effects of-and common responses to-such mental states, and sketch some practical strategies for addressing ambivalence. In applying lessons from the philosophical literature and decision theory, our aim is to provide ethicists and clinicians with the tools to better understand and effectively intervene in cases of ambivalence.

A Disease Identification Algorithm for Medical Crowdfunding Campaigns: Validation Study.

BACKGROUND: Web-based crowdfunding has become a popular method to raise money for medical expenses, and there is growing research interest in this topic. However, crowdfunding data are largely composed of unstructured text, thereby posing many challenges for researchers hoping to answer questions about specific medical conditions. Previous studies have used methods that either failed to address major challenges or were poorly scalable to large sample sizes. To enable further research on this emerging funding mechanism in health care, better methods are needed. OBJECTIVE: We sought to validate an algorithm for identifying 11 disease categories in web-based medical crowdfunding campaigns. We hypothesized that a disease identification algorithm combining a named entity recognition (NER) model and word search approach could identify disease categories with high precision and accuracy. Such an algorithm would facilitate further research using these data. METHODS: Web scraping was used to collect data on medical crowdfunding campaigns from GoFundMe (GoFundMe Inc). Using pretrained NER and entity resolution models from Spark NLP for Healthcare in combination with targeted keyword searches, we constructed an algorithm to identify conditions in the campaign descriptions, translate conditions to International Classification of Diseases, 10th Revision, Clinical Modification (ICD-10-CM) codes, and predict the presence or absence of 11 disease categories in the campaigns. The classification performance of the algorithm was evaluated against 400 manually labeled campaigns. RESULTS: We collected data on 89,645 crowdfunding campaigns through web scraping. The interrater reliability for detecting the presence of broad disease categories in the campaign descriptions was high (Cohen κ: range 0.69-0.96). The NER and entity resolution models identified 6594 unique (276,020 total) ICD-10-CM codes among all of the crowdfunding campaigns in our sample. Through our word search, we identified 3261 additional campaigns for which a medical condition was not otherwise detected with the NER model. When averaged across all disease categories and weighted by the number of campaigns that mentioned each disease category, the algorithm demonstrated an overall precision of 0.83 (range 0.48-0.97), a recall of 0.77 (range 0.42-0.98), an F1 score of 0.78 (range 0.56-0.96), and an accuracy of 95% (range 90%-98%). CONCLUSIONS: A disease identification algorithm combining pretrained natural language processing models and ICD-10-CM code-based disease categorization was able to detect 11 disease categories in medical crowdfunding campaigns with high precision and accuracy.

Palliative Care Consultations in Patients with Severe Traumatic Brain Injury: Who Receives Palliative Care Consultations and What Does that Mean for Utilization?

BACKGROUND: Palliative care has the potential to improve goal-concordant care in severe traumatic brain injury (sTBI). Our primary objective was to illuminate the demographic profiles of patients with sTBI who receive palliative care encounters (PCEs), with an emphasis on the role of race. Secondary objectives were to analyze PCE usage over time and compare health care resource utilization between patients with or without PCEs. METHODS: The National Inpatient Sample database was queried for patients age ≥ 18 who had a diagnosis of sTBI, defined by using International Classification of Diseases, 9th Revision codes. PCEs were defined by using International Classification of Diseases, 9th Revision code V66.7 and trended from 2001 to 2015. To assess factors associated with PCE in patients with sTBI, we performed unweighted generalized estimating equations regression. PCE association with decision making was modeled via its effect on rate of percutaneous endoscopic gastrostomy (PEG) tube placement. To quantify differences in PCE-related decisions by race, race was modeled as an effect modifier. RESULTS: From 2001 to 2015, the proportion of palliative care usage in patients with sTBI increased from 1.5 to 36.3%, with 41.6% White, 22.3% Black, and 25% Hispanic patients with sTBI having a palliative care consultation in 2015, respectively. From 2008 to 2015, we identified 17,673 sTBI admissions. White and affluent patients were more likely to have a PCE than Black, Hispanic, and low socioeconomic status patients. Across all races, patients receiving a PCE resulted in a lower rate of PEG tube placement; however, White patients exhibited a larger reduction of PEG tube placement than Black patients. Patients using palliative care had lower total hospital costs (median $16,368 vs. $26,442, respectively). CONCLUSIONS: Palliative care usage for sTBI has increased dramatically this century and it reduces resource utilization. This is true across races, however, its usage rate and associated effect on decision making are race-dependent, with White patients receiving more PCE and being more likely to decline the use of a PEG tube if they have had a PCE.

Hydroxychloroquine for COVID-19: Variation in Regional Political Preferences Predicted New Prescriptions after President Trump's Endorsement.

CONTEXT: On March 19, 2020, President Donald Trump endorsed using hydroxychloroquine for COVID-19 treatment despite inconclusive evidence of the drug's effectiveness. This study sought to understand the influence of political preferences on prescription uptake by quantifying the relationship between a geographic area's partisan leaning and hydroxychloroquine prescription rates following Trump's endorsement. METHODS: We analyzed hydroxychloroquine prescriptions filled in 205 continental US designated market areas (DMAs) between March 1, 2018, and July 31, 2020, and the percentage of votes for Donald Trump in the 2016 presidential election in each DMA. We estimated associations by using an empirical strategy resembling a difference-in-differences estimation. FINDINGS: Before President Trump's endorsement, mean weekly hydroxychloroquine prescription rates were similar across DMAs with the highest and lowest Trump vote percentages (0.56 and 0.49 scripts per 100,000). After Trump's endorsement, although both high- and low-Trump-supportive DMAs experienced sharp increases in weekly hydroxychloroquine prescription rates, results indicated a 1-percentage-point increase in share of Trump votes was associated with 0.013, or 2%, more weekly hydroxychloroquine prescriptions per 100,000 people (b = 0.013, t = 2.20, p = .028). CONCLUSION: President Trump's endorsement of an untested therapy influenced prescribing behavior, especially when that endorsement aligned with communities' political leanings.

A novel decision aid for acute myeloid leukemia: a feasibility and preliminary efficacy trial.

PURPOSE: Acute myeloid leukemia (AML) is a hematologic malignancy characterized by a poor prognosis but also a paradoxical possibility of cure. This renders decision-making complex and imminent. Unfortunately, many patients with AML misestimate their prognosis and treatment risk. While decision aids can improve illness understanding and reduce decisional conflict, there are no validated decision aids for AML. We developed and tested a novel AML decision aid (NCT03442452). METHODS: Patients (n = 20) were recruited at Duke University from May 2018 to February 2019. Participants completed assessments of AML knowledge and decisional conflict, before and after using the electronic decision aid. The primary endpoint was feasibility (endpoint met if > 80% of study participants completed all study components). Secondary analyses of efficacy were conducted using paired t tests for dependent pre-/post-samples. RESULTS: The primary endpoint of feasibility was met (100% of participants completed all study components). Secondary analyses showed improved knowledge and reduced decisional conflict after using the decision aid. Knowledge scores improved from a mean of 11.8 (out of 18) correct items at baseline to 15.1 correct items after using the decision aid (mean difference 3.35; p < 0.0001). Decisional conflict scores reduced significantly from baseline to post-test as well (mean difference - 6.5; p = 0.02). CONCLUSION: These findings suggest that our AML decision aid is a useful tool to improve the patient experience and promote shared decision-making in AML. A randomized efficacy trial is planned.

Gain-loss framing and patients' decisions: a linguistic examination of information framing in physician-patient conversations.

When discussing risks and benefits with cancer patients, physicians could focus on losses such as mortality rates and cancer recurrence or, alternatively, gains such as survival rates and curing cancer. Previous research has shown that the way health information is framed influences individuals' preferences and choices. We operationalized gain-loss framing as physicians' choice of words related to gains (cancer survival), or losses (cancer mortality). In an exploratory analysis, we investigated (a) whether physicians used gain or loss words as a function of their recommendation, (b) whether physicians' choice of words was associated with patients' treatment choices. We analyzed transcribed consultations with male patients who had intermediate-risk prostate cancer. Using an iterative process of gathering and evaluating words, we created gain- and loss-dictionaries. The loss-dictionary included words related to cancer death and cancer progression. The gain-dictionary included words related to survival and cure. Using Linguistic Inquiry and Word Count software, we calculated the number of words related to gains and losses in each transcript. We found that physicians who recommended immediate cancer treatment for prostate cancer (vs. active surveillance) used slightly fewer words related to losses and significantly fewer words related specifically to death from cancer. Further analysis showed that loss words were associated with the patient's choice of immediate cancer treatment. A novel method of automated text analysis showed that physicians' use of loss words was correlated with physicians' recommendations for cancer treatment versus active surveillance. Additionally, loss words in consultations were associated with patients' choice of cancer treatment.

Head to head randomized trial of two decision aids for prostate cancer.

BACKGROUND: While many studies have tested the impact of a decision aid (DA) compared to not receiving any DA, far fewer have tested how different types of DAs affect key outcomes such as treatment choice, patient-provider communication, or decision process/satisfaction. This study tested the impact of a complex medical oriented DA compared to a more simplistic decision aid designed to encourage shared decision making in men with clinically localized prostate cancer. METHODS: 1028 men at 4 VA hospitals were recruited after a scheduled prostate biopsy. Participants completed baseline measures and were randomized to receive either a simple or complex DA. Participants were men with clinically localized cancer (N = 285) by biopsy and who completed a baseline survey. Survey measures: baseline (biopsy); immediately prior to seeing the physician for biopsy results (pre- encounter); one week following the physician visit (post-encounter). Outcome measures included treatment preference and treatment received, knowledge, preference for shared decision making, decision making process, and patients' use and satisfaction with the DA. RESULTS: Participants who received the simple DA had greater interest in shared decision making after reading the DA (p = 0.03), found the DA more helpful (p's < 0.01) and were more likely to be considering watchful waiting (p = 0.03) compared to those receiving the complex DA at Time 2. While these differences were present before patients saw their urologists, there was no difference between groups in the treatment patients received. CONCLUSIONS: The simple DA led to increased desire for shared decision making and for less aggressive treatment. However, these differences disappeared following the physician visit, which appeared to change patients' treatment preferences. Trial registration This trial was pre-registered prior to recruitment of participants.

"Cure" Versus "Clinical Remission": The Impact of a Medication Description on the Willingness of People Living with HIV to Take a Medication.

Many people living with HIV (PLWHIV) state that they would be willing to take significant risks to be "cured" of the virus. However, how they interpret the word "cure" in this context is not clear. We used a randomized survey to examine whether PLWHIV had a different willingness to take a hypothetical HIV medication if it causes flu-like symptoms, but provides: (a) cure, (b) remission that was labeled "cure", or (c) remission. PLWHIV (n = 454) were more willing to take a medication that provided a "cure" versus a "remission" if the side effects lasted less than 1 year. PLWHIV were more willing to take a medication that provided a remission that was labeled "cure" versus a "remission" (p = 0.01) if the side effects lasted 2 weeks. Clinicians and researchers should be aware of the impact of the word "cure" and ensure that PLWHIV fully understand the possible outcomes of their treatment options.

The Impact of Cost Conversations on the Patient-Physician Relationship.

Previous research has suggested that fear of harm to the patient-physician relationship is an important barrier to conversations about cost of care. However, few experimental studies have investigated the effects of cost of care conversations on the patient-physician relationship, particularly from the patient's perspective. In the current research, we take an experimental approach to investigate patients' attitudes and preferences for a hypothetical physician who discusses cost versus one who does not. Across three studies, using data from both the general population and cancer patients, we find that people prefer a hypothetical physician who discusses cost over one who does not (Pilot Study, Studies 1 and 2). In addition, we find that people use cost information to inform their hypothetical treatment decisions without changing their attitudes toward the physician who includes this information (Study 1). Finally, we examine how and when cost information compares to more traditional medical information (e.g., side effects; Study 2). We discuss the implications of this research for cost communications and the patient-physician relationship, highlighting that cost conversations may not be as harmful as previously thought.