"Like not having an arm": a qualitative study of the impact of visitor restrictions on cancer care during the COVID-19 pandemic.

PURPOSE: Visitor restriction policies to prevent the spread of COVID-19 among patients and clinicians were widespread during the pandemic, resulting in the exclusion of caregivers at key points of cancer care and treatment decision-making. The aim of this study was to explore how visitor restrictions impacted cancer treatment decision-making and care from patient and physician perspectives. METHODS: Sixty-seven interviews, including 48 cancer patients and 19 cancer and palliative care physicians from four academic cancer centers in the USA between August 2020 and July 2021. RESULTS: Visitor restrictions that prevented caregivers from participating in clinic appointments and perioperative hospital care created challenges in cancer care that spanned three domains: practical, social, and informational. We identified eight themes that characterized challenges within the three domains across all three groups, and that these challenges had negative emotional and psychological consequences for both groups. Physicians perceived that patients' negative experiences due to lack of support through the physical presence of caregivers may have worsened patient outcomes. CONCLUSIONS: Our data demonstrate the tripartite structure of the therapeutic relationship in cancer care with caregivers providing critical support in the decision-making and care process to both patients and physicians. Caregiver absences led to practical, psychosocial, and informational burdens on both groups, and likely increased the risk of burnout among physicians. Our findings suggest that the quality of cancer care can be enhanced by engaging caregivers and promoting their physical presence during clinical encounters.

Race and Ethnicity Reporting and Representation in Pediatric Clinical Trials.

BACKGROUND AND OBJECTIVES: Representative enrollment of racial and ethnic minoritized populations in biomedical research ensures the generalizability of results and equitable access to novel therapies. Previous studies on pediatric clinical trial diversity are limited to subsets of journals or disciplines. We aimed to evaluate race and ethnicity reporting and representation in all US pediatric clinical trials on ClinicalTrials.gov. METHODS: We performed a cross-sectional study of US-based clinical trials registered on ClinicalTrials.gov that enrolled participants aged <18 years old between October 2007 and March 2020. We used descriptive statistics, compound annual growth rates, and multivariable logistic regression for data analysis. Estimates of US population statistics and disease burden were calculated with the US Census, Kids' Inpatient Database, and National Survey of Children's Health. RESULTS: Among 1183 trials encompassing 405 376 participants, race and ethnicity reporting significantly increased from 27% in 2007 to 87% in 2018 (P < .001). The median proportional enrollment of Asian American children was 0.6% (interquartile range [IQR], 0%-3.7%); American Indian, 0% (IQR, 0%-0%); Black, 12% (IQR, 2.9%-28.4%); Hispanic, 7.1% (IQR, 0%-18.6%); and white 66.4% (IQR, 41.5%-81.6%). Asian American, Black, and Hispanic participants were underrepresented relative to US population demographics. Compared with expected proportions based on disease prevalence and hospitalizations, Asian American and Hispanic participants were most consistently underrepresented across diagnoses. CONCLUSIONS: While race and ethnicity reporting in pediatric clinical trials has improved, the representative enrollment of minoritized participants remains an ongoing challenge. Evidence-based and policy solutions are needed to address these disparities to advance biomedical innovation for all children.

Analysis of Female Enrollment and Participant Sex by Burden of Disease in US Clinical Trials Between 2000 and 2020.

Importance: Although female representation has increased in clinical trials, little is known about how clinical trial representation compares with burden of disease or is associated with clinical trial features, including disease category. Objective: To describe the rate of sex reporting (ie, the presence of clinical trial data according to sex), compare the female burden of disease with the female proportion of clinical trial enrollees, and investigate the associations of disease category and clinical trial features with the female proportion of clinical trial enrollees. Design, Setting, and Participants: This cross-sectional study included descriptive analyses and logistic and generalized linear regression analyses with a logit link. Data were downloaded from the Aggregate Analysis of ClinicalTrials.gov database for all studies registered between March 1, 2000, and March 9, 2020. Enrollment was compared with data from the 2016 Global Burden of Disease database. Of 328 452 clinical trials, 70 095 were excluded because they had noninterventional designs, 167 936 because they had recruitment sites outside the US, 69 084 because they had no reported results, 1003 because they received primary funding from the US military, and 314 because they had unclear sex categories. A total of 20 020 interventional studies enrolling approximately 5.11 million participants met inclusion criteria and were divided into those with and without data on participant sex. Exposures: The primary exposure variable was clinical trial disease category. Secondary exposure variables included funding, study design, and study phase. Main Outcomes and Measures: Sex reporting and female proportion of participants in clinical trials. Results: Among 20 020 clinical trials from 2000 to 2020, 19 866 studies (99.2%) reported sex, and 154 studies (0.8%) did not. Clinical trials in the fields of oncology (46% of disability-adjusted life-years [DALYs]; 43% of participants), neurology (56% of DALYs; 53% of participants), immunology (49% of DALYs; 46% of participants), and nephrology (45% of DALYs; 42% of participants) had the lowest female representation relative to corresponding DALYs. Male participants were underrepresented in 8 disease categories, with the greatest disparity in clinical trials of musculoskeletal disease and trauma (11.3% difference between representation and proportion of DALYs). Clinical trials of preventive interventions were associated with greater female enrollment (adjusted relative difference, 8.48%; 95% CI, 3.77%-13.00%). Clinical trials in cardiology (adjusted relative difference, -18.68%; 95% CI, -22.87% to -14.47%) and pediatrics (adjusted relative difference, -20.47%; 95% CI, -25.77% to -15.16%) had the greatest negative association with female enrollment. Conclusions and Relevance: In this study, sex differences in clinical trials varied by clinical trial disease category, with male and female participants underrepresented in different medical fields. Although sex equity has progressed, these findings suggest that sex bias in clinical trials persists within medical fields, with negative consequences for the health of all individuals.

Recognizing the Role of Language in the Hidden Curriculum of Undergraduate Medical Education: Implications for Equity in Medical Training.

Medical education involves a transition from "outsider" to "insider" status, which entails both rigorous formal training and an inculturation of values and norms via a hidden curriculum. Within this transition, the ability to "talk the talk" designates an individual as an insider, and learning to talk this talk is a key component of professional socialization. This Article uses the framework of "patterns of medical language" to explore the role of language in the hidden curriculum of medical education, exploring how students must learn to recognize and participate fluently within patterns of medical language to be acknowledged and evaluated as competent trainees. The authors illustrate this by reframing the Association of American Medical Colleges' Core Entrustable Professional Activities for Entering Residency as a series of overlapping patterns of medical language that students are expected to master before residency. The authors propose that many of these patterns of medical language are learned through trial and error, taught via a hidden curriculum rather than through explicit instruction. Medical students come from increasingly diverse backgrounds and therefore begin medical training further from or closer to insider status. Thus, evaluative practices based on patterns of medical language, which are not explicitly taught, may exacerbate and perpetuate existing inequities in medical education. This Article aims to bring awareness to the importance of medical language within the hidden curriculum of medical education, to the role of medical language as a marker of insider status, and to the centrality of medical language in evaluative practices. The authors conclude by offering possible approaches to ameliorate the inequities that may exist due to current evaluative practices.

Factors associated with willingness to enter care homes for the elderly and pre-elderly in west of China.

The research describes willingness of urban and rural residents over age 40 to enter care homes and examines personal factors which impact their willingness. Trained investigators gathered survey responses on sociodemographic information, physical health status, lifestyle behaviors, willingness to enter care homes, and specific service needs. 34.8% of the 1186 survey participants expressed willingness to enter care homes, with lower percentage of rural residents (25.8%) expressing willingness compared to urban residents (41.6%). The decision to enter care homes is impacted by occupation for urban residents and education status for rural residents. Healthcare remains the top consideration when considering care homes.

Treatability Statements in Serious Illness: The Gap Between What is Said and What is Heard.

Empirical work has shown that patients and physicians have markedly divergent understandings of treatability statements (e.g., "This is a treatable condition," "We have treatments for your loved one") in the context of serious illness. Patients often understand treatability statements as conveying good news for prognosis and quality of life. In contrast, physicians often do not intend treatability statements to convey improvement in prognosis or quality of life, but merely that a treatment is available. Similarly, patients often understand treatability statements as conveying encouragement to hope and pursue further treatment, though this may not be intended by physicians. This radical divergence in understandings may lead to severe miscommunication. This paper seeks to better understand this divergence through linguistic theory-in particular, H.P. Grice's notion of conversational implicature. This theoretical approach reveals three levels of meaning of treatability statements: (1) the literal meaning, (2) the physician's intended meaning, and (3) the patient's received meaning. The divergence between the physician's intended meaning and the patient's received meaning can be understood to arise from the lack of shared experience between physicians and patients, and the differing assumptions that each party makes about conversations. This divergence in meaning raises new and largely unidentified challenges to informed consent and shared decision making in the context of serious illness, which indicates a need for further empirical research in this area.