Factors Potential Patients Deem Important for Decision-Making in High-Risk Surgical Scenarios.

BACKGROUND: Surgical futility and shared decision-making to proceed with high-risk surgery are challenging for patients and surgeons alike. It is unknown which factors contribute to a patient's decision to undergo high-risk and potentially futile surgery. The clinical perspective, founded in statistical probabilities of survival, could be misaligned with a patient's determination of worthwhile surgery. This study assesses factors most important to patients in pursuing high-risk surgery. STUDY DESIGN: Via anonymous survey, lay participants recruited through Amazon's Mturk were presented high-risk scenarios necessitating emergency surgery. They rated factors (objective risk and quality-of-life domains) in surgical decision-making (0 = not at all, 4 = extremely) and made the decision to pursue surgery based on clinical scenarios. Repeated observations were accounted for via a generalized mixed-effects model and estimated effects of respondent characteristics, scenario factors, and likelihood to recommend surgery. RESULTS: Two hundred thirty-six participants completed the survey. Chance of survival to justify surgery averaged 69.3% (SD = 21.3), ranking as the highest determining factor in electing for surgery. Other factors were also considered important in electing for surgery, including the average number of days the patient lived if surgery were and were not completed, functional and pain status after surgery, family member approval, and surgery cost. Postoperative independence was associated with proceeding with surgery (p < 0.001). Recommendations by patient age was moderated by respondent age (p = 0.002). CONCLUSION: Patients highly value likelihood of survival and postoperative independence in shared decision-making for high-risk surgery. It is important to improve the understanding of surgical futility from a patient's perspective.

Patient responses to daily cardiac resynchronization therapy device data: A pilot trial assessing a novel patient-centered digital dashboard in everyday life.

Background: Heart failure (HF) is a growing public health problem in the United States. Implantable cardiac resynchronization therapy (CRT) devices reduce mortality and morbidity, and remote monitoring (RM) of these devices improves outcomes. However, patient RM adherence is low, due in part to lack of access to their RM data. Providing these data to patients may increase engagement, but they must be appropriately tailored to ensure understanding. Objective: The purpose of this study was to examine patients' experiences interacting with their RM data through a novel digital dashboard as part of daily life. Methods: In this mixed-methods pilot study, 10 patients with implantable CRT defibrillators were given access to a patient-centered RM data dashboard, updated daily for 6-12 months. Pre- and post-health literacy, engagement, electronic portal (MyChart, Epic Systems Corporation) logins, and RM adherence were measured; system usability scores were collected at exit; and dashboard views were tracked. Exit interviews were conducted to elucidate patients' experiences. Results: Participants (100% white; 60% male; age 34-80 years [mean ± SD: 62.0 ± 13.4]) had adequate health literacy, increased MyChart logins (P = .0463), and nonsignificant increase in RM adherence. Participants viewed their dashboards 0-42 times (mean 14.9 ± 12.5). Interviews revealed participants generally appreciated access to their data, understood it, and responded to changes; however, questions and concerns remained regarding data interpretation and visualization. Conclusion: Preliminary findings support potential future integration of a CRT RM data dashboard in the daily care of HF patients. With appropriate informational support and personalization, sharing RM data with patients in a tailored dashboard may improve health engagement.

Selection biases in technology-based intervention research: patients' technology use relates to both demographic and health-related inequities.

OBJECTIVE: Researchers conduct studies with selection biases, which may limit generalizability and outcomes of intervention research. In this methodological reflection, we examined demographic and health characteristics of implantable cardioverter defibrillator patients who were excluded from an informatics intervention due to lack of access to a computer and/or the internet. MATERIALS AND METHODS: Using information gathered from surveys and electronic health records, we compared the intervention group to excluded patients on demographic factors, computer skills, patient activation, and medical history. RESULTS: Excluded patients were older, less educated, less engaged and activated in their health, and had worse health (ie, more medical comorbidities) than nonexcluded patients. DISCUSSION: Although excluded from the intervention based solely on lack of access to a computer and/or internet, excluded patients may have needed the intervention more because they were sicker with more comorbidities. CONCLUSION: Researchers must be mindful of enrollment biases and demographic and health-related inequities that may exist during recruitment for technology-based interventions.