Accuracy of Expected Symptoms and Subsequent Quality of Life Measures Among Adults With COPD.

Importance: Patients' expectations for future health guide their decisions and enable them to prepare, adapt, and cope. However, little is known about how inaccurate expectations may affect patients' illness outcomes. Objective: To assess the association between patients' expectation inaccuracies and health-related quality of life. Design, Setting, and Participants: This cohort study of patients with severe chronic obstructive pulmonary disease (COPD) was conducted from 2017 to 2021, which included a 24-month follow-up period. Eligible participants received outpatient primary care at pulmonary clinics of a single large US health system. Data were analyzed between 2021 and 2023. Exposure: Expectation accuracy, measured by comparing patients' self-reported expectations of their symptom burden with their actual physical and emotional symptoms 3, 12, and 24 months in the future. Main Outcome and Measure: Health-related quality of life, measured by the St George's Respiratory Questionnaire-COPD at 3, 12, and 24 months. Results: A total of 207 participants were included (median age, 65.5 years [range, 42.0-86.0 years]; 120 women [58.0%]; 118 Black [57.0%], 79 White [38.2%]). The consent rate among approached patients was 80.0%. Most patients reported no or only limited discussions of future health and symptom burdens with their clinicians. Across physical and emotional symptoms and all 3 time points, patients' expectations were more optimistic than their experiences. There were no consistent patterns of measured demographic or behavioral characteristics associated with expectation accuracy. Regression models revealed that overoptimistic expectations of future burdens of dyspnea (linear regression estimate, 4.68; 95% CI, 2.68 to 6.68) and negative emotions (linear regression estimate, -3.04; 95% CI, -4.78 to 1.29) were associated with lower health-related quality of life at 3 months after adjustment for baseline health-related quality of life, forced expiratory volume over 1 second, and interval clinical events (P < .001 for both). Similar patterns were observed at 12 months (dyspnea: linear regression estimate, 2.41; 95% CI, 0.45 to 4.37) and 24 months (negative emotions: linear regression estimate, -2.39; 95% CI, -4.67 to 0.12; dyspnea: linear regression estimate, 3.21; 95% CI, 0.82 to 5.60), although there was no statistically significant association between expectation of negative emotions and quality of life at 12 months. Conclusions and Relevance: In this cohort study of patients with COPD, we found that patients are overoptimistic in their expectations about future negative symptom burdens, and such inaccuracies were independently associated with worse well-being over time. Developing and implementing strategies to improve patients' symptom expectations may improve patient-centered outcomes.

Renewed calls for abortion-related research in the post-Roe era.

Nearly 50 years after Roe versus Wade, the United States Supreme Court's decision in Dobbs versus Jackson Women's Health Organization unraveled the constitutional right to abortion, allowing individual states to severely restrict or ban the procedure. In response, leading medical, public health, and community organizations have renewed calls for research to elucidate and address the burgeoning social and medical consequences of new abortion restrictions. Abortion research not only includes studies that establish the safety, quality, and efficacy of evidence-based abortion care protocols, but also encompasses studies on the availability of abortion care, the consequences of being denied an abortion, and the legal and social burdens surrounding abortion. The urgency of these calls for new evidence underscores the importance of ensuring that research in this area is conducted in an ethical and respectful manner, cognizant of the social, political, and structural conditions that shape reproductive health inequities and impact each stage of research-from protocol design to dissemination of findings. Research ethics relates to the moral principles undergirding the design and execution of research projects, and concerns itself with the technicalities of ethical questions related to the research process, such as informed consent, power relations, and confidentiality. Critical insights and reflections from reproductive justice, community engagement, and applied ethics frameworks have bolstered existing research ethics scholarship and discourse by underscoring the importance of meaningful engagement with community stakeholders-bringing attention to overlapping structures of oppression, including racism, sexism, and ways that these structures are perpetuated in the research process.

Do Health Care Organizations Have Legitimate Responsibilities beyond the Delivery of Health Care? Insights from Citizenship Theory.

Many health care organizations made public commitments to become antiracist in the wake of George Floyd's murder. These actions raise questions about the appropriateness of health care's engagement in racial justice and social justice movements generally. We argue that health care organizations can be usefully thought of as having two roles: a functional role to care for the sick and a meta-role as an organizational citizen. Fulfilling the role of citizen may require participating in the pursuit of social justice, including efforts to achieve racial equity. The demands of these two roles will need to be balanced, but the role of organizational citizen has been largely ignored and merits serious attention.

Development and validation of a prediction model for actionable aspects of frailty in the text of clinicians' encounter notes.

OBJECTIVE: Frailty is a prevalent risk factor for adverse outcomes among patients with chronic lung disease. However, identifying frail patients who may benefit from interventions is challenging using standard data sources. We therefore sought to identify phrases in clinical notes in the electronic health record (EHR) that describe actionable frailty syndromes. MATERIALS AND METHODS: We used an active learning strategy to select notes from the EHR and annotated each sentence for 4 actionable aspects of frailty: respiratory impairment, musculoskeletal problems, fall risk, and nutritional deficiencies. We compared the performance of regression, tree-based, and neural network models to predict the labels for each sentence. We evaluated performance with the scaled Brier score (SBS), where 1 is perfect and 0 is uninformative, and the positive predictive value (PPV). RESULTS: We manually annotated 155 952 sentences from 326 patients. Elastic net regression had the best performance across all 4 frailty aspects (SBS 0.52, 95% confidence interval [CI] 0.49-0.54) followed by random forests (SBS 0.49, 95% CI 0.47-0.51), and multi-task neural networks (SBS 0.39, 95% CI 0.37-0.42). For the elastic net model, the PPV for identifying the presence of respiratory impairment was 54.8% (95% CI 53.3%-56.6%) at a sensitivity of 80%. DISCUSSION: Classification models using EHR notes can effectively identify actionable aspects of frailty among patients living with chronic lung disease. Regression performed better than random forest and neural network models. CONCLUSIONS: NLP-based models offer promising support to population health management programs that seek to identify and refer community-dwelling patients with frailty for evidence-based interventions.