Capturing the Work of Patients' Family Members in the Medical Intensive Care Unit Using Naturalistic Observations.

BACKGROUND: The contributions of cognitive and behavioral work of patients' family members in intensive care units remain largely unrecognized. OBJECTIVE: The objective of this study was to develop a framework of outwardly observable family work, with specific focus on describing the physical space. METHODS: We conducted approximately 50 hrs of naturalistic observations of family activities on a medical intensive care unit (MICU) at a large, Midwestern teaching hospital. RESULTS: We created a framework of activities that include requesting, receiving, or delivering either information or action, along with examples. Further, we identified clinician and staff roles with whom families interact and characterized the physical spaces in which interactions take place. CONCLUSIONS: Knowledge contribution is a proposed framework of family activities in the MICU. It has the potential to guide and be further described by future research and to inform development of human-centered family-facing interventions to support cognitive and behavioral cognitive and behavioral work.

Patient decision making in recovering from surgery.

Patient work in surgery recovery is fraught with complex judgments and decisions. These decisions are not unlike ones that professionals make that we traditionally study with the Naturalistic Decision Making (NDM) theoretical lens and methods. Similarly, patients are making decisions in naturalistic settings and doing so with the objective of minimizing risk and maximizing safety. What is different is that patients are put in a position to perform complex, high level, high consequence work in the absence of any training, education, or decision support. Using a lived experience, I illustrate that the burden of judgement and decision making in surgery recovery work (e.g., caring for surgical sites, managing drains, managing medications, supporting activities of daily living) can be understood through a macrocognitive paradigm. Thus, the NDM theoretical lens and the associated methods is appropriate to study this problem space.

Implementing an Electronic Patient-Reported Outcome and Decision Support Tool in Early Intervention.

OBJECTIVE: The aim of the study is to identify and prioritize early intervention (EI) stakeholders' perspectives of supports and barriers to implementing the Young Children's Participation and Environment Measure (YC-PEM), an electronic patient-reported outcome (e-PRO) tool, for scaling its implementation across multiple local and state EI programs. METHODS: An explanatory sequential (quan > QUAL) mixed-methods study was conducted with EI families (n = 6), service coordinators (n = 9), and program leadership (n = 7). Semi-structured interviews and focus groups were used to share select quantitative pragmatic trial results (e.g., percentages for perceived helpfulness of implementation strategies) and elicit stakeholder perspectives to contextualize these results. Three study staff deductively coded transcripts to constructs in the Consolidated Framework for Implementation Research (CFIR). Data within CFIR constructs were inductively analyzed to generate themes that were rated by national early childhood advisors for their relevance to longer term implementation. RESULTS: All three stakeholder groups (i.e., families, service coordinators, program leadership) identified thematic supports and barriers across multiple constructs within each of four CFIR domains: (1) Six themes for "intervention characteristics," (2) Six themes for "process," (3) three themes for "inner setting," and (4) four themes for "outer setting." For example, all stakeholder groups described the value of the YC-PEM e-PRO in forging connections and eliciting meaningful information about family priorities for efficient service plan development ("intervention characteristics"). Stakeholders prioritized reaching families with diverse linguistic preferences and user navigation needs, further tailoring its interface with automated data capture and exchange processes ("process"); and fostering a positive implementation climate ("inner setting"). Service coordinators and program leadership further articulated the value of YC-PEM e-PRO results for improving EI access ("outer setting"). CONCLUSION: Results demonstrate the YC-PEM e-PRO is an evidence-based intervention that is viable for implementation. Optimizations to its interface are needed before undertaking hybrid type-2 and 3 multisite trials to test these implementation strategies across state and local EI programs with electronic data capture capabilities and diverse levels of organizational readiness and resources for implementation.

Impact of sleep deficiency on surgical performance: a prospective assessment.

STUDY OBJECTIVES: Sleep deficiency can adversely affect the performance of resident physicians, resulting in greater medical errors. However, the impact of sleep deficiency on surgical outcomes, particularly among attending surgeons, is less clear. METHODS: Sixty attending surgeons from academic and community departments of surgery or obstetrics and gynecology were studied prospectively using direct observation and self-report to explore the effect of sleep deprivation on patient safety, operating room communication, medical errors, and adverse events while operating under 2 conditions, post-call (defined as > 2 hours of nighttime clinical duties) and non-post-call. RESULTS: Each surgeon contributed up to 5 surgical procedures post-call and non-post-call, yielding 362 cases total (150 post-call and 210 non-post-call). Most common were caesarian section and herniorrhaphy. Hours of sleep on the night before the operative procedure were significantly less post-call (4.98 ± 1.41) vs non-post-call (6.68 ± 0.88, P < .01). Errors were infrequent and not related to hours of sleep or post-call status. However, Non-Technical Skills for Surgeons ratings demonstrated poorer performance while post-call for situational awareness, decision-making, and communication/teamwork. Fewer hours of sleep also were related to lower ratings for situational awareness and decision-making. Decreased self-reported alertness was observed to be associated with increased procedure time. CONCLUSIONS: Sleep deficiency in attending surgeons was not associated with greater errors during procedures performed during the next day. However, procedure time was increased, suggesting that surgeons were able to compensate for sleep loss by working more slowly. Ratings on nontechnical surgical skills were adversely affected by sleep deficiency. CITATION: Quan SF, Landrigan CP, Barger LK, et al. Impact of sleep deficiency on surgical performance: a prospective assessment. J Clin Sleep Med. 2023;19(4):673-683.

Webinar as an Informational Resource on Trastuzumab Biosimilars: Planning, Promotion, Execution, and Evaluation.

Despite the incorporation of trastuzumab biosimilars (to treat HER2-positive breast cancer) in clinical practice guidelines, gaps remain such as patient and clinician education. We hosted a webinar comprised of a panel of biosimilars experts, oncologists, pharmacist, infusion nurse, and a patient advocate. The outcomes of the webinar include audience responses to pre- and post-webinar questionnaires, educational benefits, real-time opportunities to ask questions, and a recording. Education needs to be tailored to the needs of both, patients and clinicians.

Characterizing experiences of non-medical switching to trastuzumab biosimilars using data from internet-based surveys with US-based oncologists and breast cancer patients.

PURPOSE: To characterize current experiences with communication and decision-making practices when non-medical switching to a biosimilar trastuzumab is proposed or required by cancer center or insurer. METHODS: We developed and launched 60- and 51-item internet surveys to elicit US breast cancer patient and medical oncologist lived experiences with trastuzumab biosimilars and patient information needs and seeking practices. We recruited participants using social media and administered via REDCap in 2020-2021. RESULTS: 143 breast cancer patients and 33 medical oncologists completed the surveys. 63.9% patients reported having switched to a trastuzumab biosimilar and 40.8% reported receiving no prior notification about switching. 44% of patients reported learning about biosimilars primarily through self-directed learning and 41% wanting more time to discuss with oncologist. None of the oncologists reported that the decision to switch a patient to a biosimilar was initiated by them, but rather more frequently by the insurer (45.2%). About 54.8% reported not receiving any pharmaceutical manufacturer material related to the selected biosimilar. Patients and oncologists diverged in their responses to items regarding patient opportunities to ask questions, adequacy of resources, effectiveness of treatment, patient worry, and magnitude of change. CONCLUSION: There is a need for tailored and effective patient and oncologist information and education on trastuzumab biosimilars, along with improved healthcare communication regarding switching. The discrepancy between patient-reported experiences and oncologist perceptions of the patient experience, suggests a lack of adequate information that may be a challenge not only to the uptake of trastuzumab biosimilars, but to the patient-oncologist relationship.

Differences in Emotional Distress Among Black and White Breast Cancer Survivors During the Covid-19 Pandemic: a National Survey.

The Covid-19 pandemic is straining US healthcare resources, causing significant disruptions in cancer care. Prior to the pandemic, Black cancer survivors experienced a disproportionate burden of delays in cancer treatment compared to White cancer survivors. As a result of the pandemic, disruptions in care are widespread and affect cancer survivors regardless of race. This shift presented an opportunity to investigate differences in how Black and White cancer survivors experience disruptions in cancer care due to the pandemic. We conducted a national survey of adult breast cancer survivors, distributed online from 4/2/20 to 4/27/20. We used t-tests to compare cancer and non-cancer-related worry during the Covid-19 pandemic between Black and White breast cancer survivors. Analysis of data from 570 respondents (106 Black and 464 White) indicated significantly higher levels of distress among White respondents compared to Black respondents. Our results point to the importance of assessing race differences in emotional response to disruptions in cancer care during the pandemic. We suggest that differences in emotional distress may reflect differences in previous experience of treatment delays and coping strategies between Black and White breast cancer survivors.

A Mixed-Methods Examination of Inpatient Breastfeeding Education Using a Human Factors Perspective.

Objective: The objective of this study was to examine postpartum, inpatient mother-lactation educator (LE) breastfeeding education, resulting perceptions, and patient-reported worries and outcomes. In the breastfeeding literature, there is inadequate insight into the mother-LE relationship, and specifically, the extent to which contextual factors are elicited and information is tailored accordingly. In this study, we were specifically interested in maternal contextual factors. Materials and Methods: Using a mixed methods approach, we (1) captured 20 postpartum, inpatient mother-LE breastfeeding education sessions and analyzed them for the presence of maternal contextual factors, (2) administered separate perception questions to mothers and LEs, and (3) conducted 13 follow-up interviews with mothers after being discharged from the hospital. Results: Inpatient breastfeeding education is delivered in dynamic and busy clinical settings, characterized by potential distractions such as delivery of medical care. Maternal contextual factors are infrequently elicited during the education. Although both LEs and mothers rate the sessions positively, potential gaps remain as highlighted by the analyses of semistructured interviews with mothers. Conclusion: Human factors perspective, theories, and methods are relevant to the characterization of facilitators and barriers of current breastfeeding education, as well as to the development of interventions to support the delivery of human-centered, effective, and timely breastfeeding education.

Characterizing Health Care Delays and Interruptions in the United States During the COVID-19 Pandemic: Internet-Based, Cross-sectional Survey Study.

BACKGROUND: The COVID-19 pandemic has broader geographic spread and potentially longer lasting effects than those of previous disasters. Necessary preventive precautions for the transmission of COVID-19 has resulted in delays for in-person health care services, especially at the outset of the pandemic. OBJECTIVE: Among a US sample, we examined the rates of delays (defined as cancellations and postponements) in health care at the outset of the pandemic and characterized the reasons for such delays. METHODS: As part of an internet-based survey that was distributed on social media in April 2020, we asked a US-based convenience sample of 2570 participants about delays in their health care resulting from the COVID-19 pandemic. Participant demographics and self-reported worries about general health and the COVID-19 pandemic were explored as potent determinants of health care delays. In addition to all delays, we focused on the following three main types of delays, which were the primary outcomes in this study: dental, preventive, and diagnostic care delays. For each outcome, we used bivariate statistical tests (t tests and chi-square tests) and multiple logistic regression models to determine which factors were associated with health care delays. RESULTS: The top reported barrier to receiving health care was the fear of SARS-CoV-2 infection (126/374, 33.6%). Almost half (1227/2570, 47.7%) of the participants reported experiencing health care delays. Among those who experienced health care delays and further clarified the type of delay they experienced (921/1227, 75.1%), the top three reported types of care that were affected by delays included dental (351/921, 38.1%), preventive (269/921, 29.2%), and diagnostic (151/921, 16.4%) care. The logistic regression models showed that age (P<.001), gender identity (P<.001), education (P=.007), and self-reported worry about general health (P<.001) were significantly associated with experiencing health care delays. Self-reported worry about general health was negatively related to experiencing delays in dental care. However, this predictor was positively associated with delays in diagnostic testing based on the logistic regression model. Additionally, age was positively associated with delays in diagnostic testing. No factors remained significant in the multiple logistic regression for delays in preventive care, and although there was trend between race and delays (people of color experienced fewer delays than White participants), it was not significant (P=.06). CONCLUSIONS: The lessons learned from the initial surge of COVID-19 cases can inform systemic mitigation strategies for potential future disruptions. This study addresses the demand side of health care delays by exploring the determinants of such delays. More research on health care delays during the pandemic is needed, including research on their short- and long-term impacts on patient-level outcomes such as mortality, morbidity, mental health, people's quality of life, and the experience of pain.

Addressing the critical need for long-term mental health data during the COVID-19 pandemic: Changes in mental health from April to September 2020.

Despite the large amounts of research currently being conducted and the high number of editorials warning about the potential mental health impacts, there is a stunning lack of longitudinal mental health data on the effects of the pandemic. Yet, the pandemic may have sizable long-term impacts on psychological distress and health behaviors-these effects may be long-lasting and may disproportionately affect some demographic groups more than others. Data came from a longitudinal international study of the impacts of the COVID-19 pandemic on adults' psychological distress and wellbeing (N = 1567). We found high rates of depression (55% were diagnosable with probable depression at baseline), anxiety (65%), and risk for PTSD (51%). More than one-third of participants who reported that they drank alcohol indicated that their drinking had increased since the start of the pandemic. Over time, depressive symptoms and suicidal thoughts and behaviors increased significantly, but acute stress symptoms decreased. Specific demographic groups (people of color and sexual and gender minorities) appeared to be at high risk of distress across analyses. Our findings suggest high rates of depression, anxiety, acute stress, and other signs of distress like isolation, hopelessness, and use of substances to cope-even at five-month follow-up. Our findings suggest a need to prioritize availability of, and access to, mental health care during both the pandemic and the recovery.

Patients Are Knowledge Workers in the Clinical Information Space.

BACKGROUND: Limited research exists on patient knowledge/cognition or "getting inside patients' heads." Because patients possess unique and privileged knowledge, clinicians need this information to make patient-centered and coordinated treatment planning decisions. To achieve patient-centered care, we characterize patient knowledge and contributions to the clinical information space. METHODS AND OBJECTIVES: In a theoretical overview, we explore the relevance of patient knowledge to care provision, apply historical perspectives of knowledge acquisition to patient knowledge, propose a representation of patient knowledge types across the continuum of care, and include illustrative vignettes about Mr. Jones. We highlight how the field of human factors (a core competency of health informatics) provides a perspective and methods for eliciting and characterizing patient knowledge. CONCLUSION: Patients play a vital role in the clinical information space by possessing and sharing unique knowledge relevant to the clinical picture. Without a patient's contributions, the clinical picture of the patient is incomplete. A human factors perspective informs patient-centered care and health information technology solutions to support clinical information sharing.

Emotional Response of US Breast Cancer Survivors during the COVID-19 Pandemic.

In a sample of 633 US adult breast cancer survivors, we examined health-related worry as a function vulnerability as influenced by communication, trust, and planning with their cancer care team during the COVID-19 pandemic. We found significant positive correlations between communication and trust, communication and planning, and trust and planning. ANCOVAs with treatment status, immunocompromised status, and delays (separately) as IVs, trust as a covariate, and cancer-related worry as a DV, yielded significant models. A noteworthy finding is the presence of trust as a significant covariate in models of vulnerability and worry.

SCHEDULING DELAYED TREATMENT AND SURGERIES POST-PANDEMIC: A STAKEHOLDER ANALYSIS.

Many are interested in how to safely ramp up elective surgeries after national, state, and voluntary shutdowns of operating rooms to minimize the spread of COVID-19 infections to patients and providers. We conducted an analysis of diverse perspectives from stakeholders regarding how to trade off risks and benefits to patients, healthcare providers, and the local community. Our findings indicate that there are a large number of different categories of stakeholders impacted by the post-pandemic decisions to reschedule delayed treatments and surgeries. For a delayed surgery, the primary stakeholders are the surgeon with expertise about the clinical benefits of undergoing an operation and the patient's willingness to tolerate uncertainty and the increased risk of infection. For decisions about how much capacity in the operating rooms and in the inpatient setting after the surgery, the primary considerations are minimizing staff infections, preventing patients from getting COVID-19 during operations and during post-surgical recovery at the hospital, conserving critical resources such as PPE, and meeting the needs of hospital staff for quality of life, such as child care needs and avoiding infecting members of their household. The timing and selection of elective surgery cases has an impact on the ability of hospitals to steward finances, which in turns affects decisions about maintaining employment of staff when operating rooms and inpatient rooms are not being used.

Piecing the Patient Story Back Together: Why the Patient and Caregiver Contribution Matters.

Clinicians make decisions based on a large and complex patient information space in time pressured situations. Through continuity, experience, and privileged knowledge, the patient and caregiver(s) are in a position to support clinician decisionmaking through information delivery. For example, they may make salient relevant information or provide an integrated patient story to help clinicians overcome challenges of making decisions based on incomplete information. Recommendations of engaging patient/caregiver(s) include fostering a culture of listening by clinicians, speaking up by patient/caregiver(s), effective patient education and health information technology, and family-centered rounding and hand-offs. Using a lived experience, I illustrate the value of the potential impact of caregiver's informational contribution to patient safety.

Patient-reported treatment delays in breast cancer care during the COVID-19 pandemic.

PURPOSE: The coronavirus disease (COVID-19) pandemic has had a profound impact on cancer care in the US Guidelines focused on the management of COVID-19, rather than healthcare needs of breast cancer patients requiring access to crucial services. This US survey of breast cancer survivors characterizes treatment delays early period in the pandemic. METHODS: We developed a survey and administered it to 609 adult breast cancer survivors in the US. We used snowball sampling with invitations distributed via social media. We used logistic regression to select a model of delay from a pool of independent variables including race, cancer stage, site of care, health insurance, and age. We used descriptive statistics to characterize delay types. RESULTS: Forty-four percent of participants reported cancer care treatment delays during the pandemic. Delays in all aspects of cancer care and treatment were reported. The only variable which had a significant effect was age (97 (.95, 99), p < 0.001) with younger respondents (M = 45.94, SD = 10.31) reporting a higher incidence of delays than older respondents (M = 48.98, SD = 11.10). There was no significant effect for race, insurance, site of care, or cancer stage. CONCLUSIONS: Our findings reveal a pervasive impact of COVID-19 on breast cancer care and a gap in disaster preparedness that leaves cancer survivors at risk for poor outcomes. Delays are critical to capture and characterize to help cancer providers and healthcare systems develop effective and patient-tailored processes and strategies to manage cases during the current pandemic wave, subsequent waves, and future disasters.

Empowering the Aging with Mobile Health: A mHealth Framework for Supporting Sustainable Healthy Lifestyle Behavior.

Healthcare providers are shifting to a value-based model that acknowledges the importance of a healthy lifestyle for managing chronic disease and mental health. This approach empowers patients to adopt and/or sustain healthy lifestyle choices through the use of innovative technologies-providing beneficial ways of delivering health literacy, self-monitoring, and patient-provider collaboration. Such pathways have the potential to enable healthy lifestyle management for a growing U.S. cohort-the "baby boomer" generation (BBG)-who are at risk for developing heart disease, stroke, arthritis, high cholesterol, and diabetes, etc. In this paper, we argue for a new mHealthy lifestyle management (MLM) model that uses mobile health technology as a means to engage BBG consumers in ways that establish their role in self-care and decision-making, as well as patient-provider collaboration that can significantly impact sustainable healthy lifestyle behaviors. By merging the domains of health informatics and human factors psychology, MLM addresses the complex challenges associated with patient-provider collaborative work, while offering a healthcare framework to BBGs in their quest to self-manage a physical and/or mental healthy lifestyle. A MLM use-case highlights the challenges and solutions for team-based clinical counseling. Finally, recommendations for future MLM tools are outlined that support patient access to personal health eTools, information, and services.

Application of Human Factors in Neonatal Intensive Care Unit Redesign.

Only recently has physical space design become more widely recognized as playing a critical role in delivery of care, with an emerging body of literature on the application of human factors approaches to design and evaluation. This chapter describes the use of human factors approaches to develop and conduct an evaluation of a proposed Neonatal Intensive Care Unit redesign in a Midwestern children's hospital. Methods included observations and knowledge elicitation from stakeholders to characterize their goals, challenges, and needs. This characterization is integral to informing the design of user-centered solutions, including physical space design. We also describe an approach to evaluating the proposed design that yielded actionable recommendations specific to hospital-driven design goals.