Improving Post-Injury Follow-up Survey Response: Incorporating Automated Modalities.

Background: Incorporating post-discharge data into trauma registries would allow for better research on patient outcomes, including disparities in outcomes. This pilot study tested a follow-up data collection process to be incorporated into existing trauma care systems, prioritizing low-cost automated response modalities. Methods: This investigation was part of a larger study that consisted of two protocols with two distinct cohorts of participants who experienced traumatic injury. Participants in both protocols were asked to provide phone, email, text, and mail contact information to complete follow-up surveys assessing patient-reported outcomes six months after injury. To increase follow-up response rates between protocol 1 and protocol 2, the study team modified the contact procedures for the protocol 2 cohort. Frequency distributions were utilized to report the frequency of follow-up response modalities and overall response rates in both protocols. Results: A total of 178 individuals responded to the 6-month follow-up survey: 88 in protocol 1 and 90 in protocol 2. After implementing new follow-up contact procedures in protocol 2 that relied more heavily on the use of automated modalities (e.g., email and text messages), the response rate increased by 17.9 percentage points. The primary response modality shifted from phone (72.7%) in protocol 1 to the combination of email (47.8%) and text (14.4%) in protocol 2. Conclusions: Results from this investigation suggest that follow-up data can feasibly be collected from trauma patients. Use of automated follow-up methods holds promise to expand longitudinal data in the national trauma registry and broaden the understanding of disparities in patient experiences.

Applying human-centered design to adapt the Jumpstart Guide for goals-of-care discussions in persons living with dementia.

BACKGROUND: Goals-of-care discussions (GOCD) are uncommon in persons living with dementia (PLWD) despite the likelihood of eventual loss of decisional capacity in the population. The Jumpstart Guide, an existing serious illness communication priming tool, can improve GOCD in certain populations, but has not previously been adapted for use among PLWD and their caregivers. METHODS: Using human-centered design (HCD), we adapted the Jumpstart Guide for use with PLWD and their caregivers. We conducted qualitative interviews with clinicians and caregivers of PLWD. Six team members conducted qualitative rapid analysis of interviews leading to the development of summary templates and integrative matrices. Four iterations of the Jumpstart Guide led to the final version. RESULTS: Thirteen clinicians and 11 caregivers were interviewed. Interviews provided key insights into the unique barriers PLWD and their caregivers face during GOCD, including discomfort with accepting a dementia diagnosis and concern with using "serious illness" to describe dementia, as is commonly done in palliative care. Clinicians described differences in GOCD with PLWD compared to other serious illnesses, and the challenge of getting patients and families to think about future health states. Interviews led to Jumpstart Guide adaptations in the following domains: (1) format and structure, (2) content, and (3) specific language. Suggested changes included prioritizing naming a decision-maker, changing conversation prompts to improve accessibility and understandability, ensuring the Jumpstart Guide could be used with patients as well as their caregivers, and altering language to avoid references to "serious illness" and "abilities." CONCLUSION: Using HCD yielded valuable insights from clinicians and caregivers about the unique barriers to conducting GOCD among PLWD and their caregivers. These insights were used to adapt the Jumpstart Guide for use with PLWD and their caregivers, which is currently being tested in a pragmatic randomized controlled trial in outpatient clinics.

Mechanical Ventilation in Older Adults With Dementia: Opportunities to Promote Goal-Concordant Care.

CONTEXT: Recent studies show increasing use of mechanical ventilation among people living with dementia. There are concerns that this trend may not be driven by patient preferences. OBJECTIVES: To better understand decision-making regarding mechanical ventilation in people living with dementia. METHODS: This was an electronic health record-based retrospective cohort study of older adults with dementia (n = 295) hospitalized at one of two teaching hospitals between 2015 and 2019 who were supported with mechanical ventilation (n = 191) or died without mechanical ventilation (n = 104). Multivariable logistic regression was used to examine associations between patient characteristics and mechanical ventilation use. RESULTS: The median age was 78 years (IQR 71-86), 41% were female, 28% resided in a nursing home, and 58% had clinical markers of advanced dementia (dehydration, weight loss, mobility limitations, or pressure ulcers). Among patients supported with mechanical ventilation, 70% were intubated within 24 hours of presentation, including 31% intubated before hospital arrival. Younger age, higher illness acuity, and absence of a treatment-limiting Physician Orders for Life-Sustaining Treatment document were associated with mechanical ventilation use; nursing home residence and clinical markers of advanced dementia were not. Most patients (89%) had a documented goals of care discussion (GOCD) during hospitalization. CONCLUSION: Future efforts to promote goal-concordant care surrounding mechanical ventilation use for people living with dementia should involve identifying barriers to goal-concordant care in pre-hospital settings, assessing the timeliness of in-hospital GOCD, and developing strategies for in-the-moment crisis communication across settings.

Disparities in Misclassification of Race and Ethnicity in Electronic Medical Records Among Patients with Traumatic Injury.

Systems-level barriers to self-reporting of race and ethnicity reduce the integrity of data entered into the medical record and trauma registry among patients with injuries, limiting research assessing the burden of racial disparities. We sought to characterize misclassification of self-identified versus hospital-recorded racial and ethnic identity data among 10,513 patients with traumatic injuries. American Indian/Alaska Native patients (59.9%) and Native Hawaiian/Pacific Islander patients (52.4%) were most likely to be misclassified. Most Hispanic/Latin(x) patients preferred to only be identified as Hispanic/Latin(x) (73.2%) rather than a separate race category (e.g., White). Incorrect identification of race/ethnicity also has substantial implications for the perceived demographics of patient population; according to the medical record, 82.3% of the population were White, although only 70.6% were self-identified as White. The frequency of misclassification of race and ethnicity for persons of color limits research validity on racial and ethnic injury disparities.

Centering patient perspectives to achieve injury-related health equity in trauma care systems: Improving trauma registry data.

BACKGROUND: Limitations in current data collection systems for patients who experience traumatic injury limit researchers' ability to identify and address disparities in injury and outcomes. We sought to develop and test a patient-centered data-collection system for equity-related data indicators that was acceptable to racially and ethnically diverse patients being treated for traumatic injuries. METHODS: Health equity indicators included in this study were race and ethnicity, language, education, employment, housing, and injury address. We conducted interviews with 245 racially and ethnically diverse trauma patients who were treated at a level-1 trauma center in the US in 2019-2020. We first interviewed 136 patients to develop a culturally resonant process and options for the health equity indicators to be added to a revised data collection system for the electronic medical record. English and Spanish interviews were audio-recorded and transcribed verbatim; qualitative analysis was used to assess patient preferences. We then pilot tested the revised data collection system with an additional 109 trauma patients to assess acceptability. Acceptability was defined as having more than 95% of participants self-identify with one of the proposed options for race/ethnicity, language, education, employment, and housing. Injury address (to identify geographic disparities) was pre-defined as acceptable if at least 85% of participants could identify exact address, cross streets, a landmark or business, or zip code of injury. RESULTS: A revised data collection system, including culturally resonant indicators and a process to be used by patient registrars to collect health equity data, was pilot tested, refined, and considered acceptable. Culturally resonant question phrasing/answer options for race/ethnicity, language, education, employment, housing status, and injury address were identified as acceptable. CONCLUSIONS: We identified a patient-centered data collection system for health equity measures with racially and ethnically diverse patients who have experienced traumatic injury. This system has the potential to increase data quality and accuracy, which is critical to quality improvement efforts and for researchers seeking to identify groups most impacted by racism and other structural barriers to equitable health outcomes and effective intervention points.

Improving Data Collection and Abstraction to Assess Health Equity in Trauma Care.

Current trauma registries suffer from inconsistent collection of data needed to assess health equity. To identify barriers/facilitators to collecting accurate equity-related data elements, we assessed perspectives of national stakeholders, Emergency Department (ED) registration, and Trauma Registry staff. We conducted a Delphi process with experts in trauma care systems and key informant interviews and focus groups with ED patient registration and trauma registry staff at a regional Level I trauma center. Topics included data collection process, barriers/facilitators for equity-related data collection, electronic health record (EHR) entry, trauma registry abstraction, and strategies to overcome technology limitations. Responses were qualitatively analyzed and triangulated with observations of ED and trauma registry staff workflow. Expert-identified barriers to consistent data collection included lack of staff investment in changes and lack of national standardization of data elements; facilitators were simplicity, quality improvement checks, and stakeholder investment in modifying existing technology to collect equity elements. ED staff reported experiences with patients reacting suspiciously to queries regarding race and ethnicity. Cultural resonance training, a script to explain equity data collection, and allowing patients to self-report sensitive items using technology were identified as potential facilitators. Trauma registry staff reported lack of discrete fields, and a preference for auto-populated and designated EHR fields. Identified barriers and facilitators of collection and abstraction of equity-related data elements from multiple stakeholders provides a framework for improving data collection. Successful implementation will require standardized definitions, staff training, use of existing technology for patient self-report, and discrete fields for added elements.

Strategies for Enhancing Family Participation in Research in the ICU: Findings From a Qualitative Study.

CONTEXT: Family members of critically ill patients who participate in research focused on palliative care issues have been found to be systematically different from those who do not. These differences threaten the validity of research and raise ethical questions about worsening disparities in care by failing to represent diverse perspectives. OBJECTIVES: This study's aims were to explore: 1) barriers and facilitators influencing family members' decisions to participate in palliative care research; and 2) potential methods to enhance research participation. METHODS: Family members who were asked to participate in a randomized trial testing the efficacy of a facilitator to improve clinician-family communication in the intensive care unit (ICU). Family members who participated (n = 17) and those who declined participation (n = 7) in Family Communication Study were interviewed about their recruitment experiences. We also included family members of currently critically ill patients to assess current experiences (n = 4). Interviews were audio-recorded and transcribed. Investigators used thematic analysis to identify factors influencing family members' decisions. Transcripts were co-reviewed to synthesize codes and themes. RESULTS: Three factors influencing participants' decisions were identified: Altruism, Research Experience, and Enhanced Resources. Altruism and Research Experience described intrinsic characteristics that are less amenable to strategies for improving participation rates. Enhanced Resources reflects families' desires for increased access to information and logistical and emotional support. CONCLUSION: Family members found their recruitment experiences to be positive when staff were knowledgeable about the ICU, sensitive to the stressful circumstances, and conveyed a caring attitude. By training research staff to be supportive of families' emotional needs and need for logistical knowledge about the ICU, recruitment of a potentially more diverse sample of families may be enhanced.

When high pressure, system constraints, and a social justice mission collide: A socio-structural analysis of emergency department social work services.

The emergency department (ED) can be a critical intervention point for many patients with multifaceted needs. Social workers have long been part of interdisciplinary ED teams. This study aimed to contribute to the limited understanding of social worker-patient interactions and factors influencing social work services in this setting. This paper reports a qualitative content analysis of social work medical record notes (N = 1509) of services provided to trauma patients in an urban, public, level 1 trauma center and an in-depth analysis of semi-structured interviews with ED social workers (N = 10). Eight major social work roles were identified: investigator, gatekeeper, resource broker, care coordinator, problem solver, crisis manager, advocate, discharge planner. Analyses revealed a complex interplay between ED social work services and multi-layered contexts. Using a social-ecological framework, we identified the interactions between micro or individual level factors, mezzo or local system level factors and macro environmental and systemic factors that play a role in ED interactions and patient services. Macro-level contextual influences were socio-structural forces including socioeconomic barriers to health, social hierarchies that reflected power differentials between providers and patients, and distrust or bias. Mezzo-level forces were limited resources, lack of healthcare system coordination, a challenging hierarchy within the medical model and the pressure to discharge patients quickly. Micro-level factors included characteristics of patients and social workers, complexity of patient stressors, empathic strain, lack of closure and compassion. All of these forces were at play in patient-social worker interactions and impacted service provision. Social workers were at times able to successfully navigate these forces, yet at other times these challenges were insurmountable. A conceptual model of ED social work and the influences on the patient-social worker interactions was developed to assist in guiding innovative research and practice models to improve services and outcomes in the complex, fast-paced ED.

The Role of Social Work in Providing Mental Health Services and Care Coordination in an Urban Trauma Center Emergency Department.

OBJECTIVE: This study examined the role of emergency department (ED) social workers and identified predictors of receipt of social work services and length of ED stay. METHODS: Comprehensive reviews were conducted of medical records of all patients (N=49,354) treated in a level 1 trauma center ED from January 1, 2012, to March 31, 2013. Content analysis of chart notes was used to categorize the types of social work services provided. Poisson regression was used to assess associations between demographic and clinical characteristics, receipt of social work services, and length of ED stay. RESULTS: Social work services were provided to 18,532 (38%) patients. Most were mental health services (54%), followed by care coordination (31%) and material support or other referrals (15%). Patients seen by social workers had complex presentations, involving mental disorder diagnoses (18%), substance use disorder diagnoses (29%), comorbid diagnoses (32%), and injuries (51%); a quarter of patients had multiple ED visits (26%). In adjusted regression analysis, females (relative risk [RR]=1.15), patients not discharged home (RR=1.44), and those with two or more comorbid diagnoses (RR=1.80), injuries due to assault (RR=1.37), and traumatic brain injury (RR=1.20) were more likely to receive social work services. Such services were associated with an increased length of ED stay (RR=1.34). CONCLUSIONS: Social workers provided services to patients with multifaceted needs resulting from complex presentations. Provision of social work services modestly increased length of ED stay. Triage algorithms are needed to target efficiencies, systematize provision of ED social work services, and improve access to services for all patients.

Developing a Family-Centered Care Model for Critical Care After Pediatric Traumatic Brain Injury.

OBJECTIVES: This study examined the family experience of critical care after pediatric traumatic brain injury in order to develop a model of specific factors associated with family-centered care. DESIGN: Qualitative methods with semi-structured interviews were used. SETTING: Two level 1 trauma centers. PARTICIPANTS: Fifteen mothers of children who had an acute hospital stay after traumatic brain injury within the last 5 years were interviewed about their experience of critical care and discharge planning. Participants who were primarily English, Spanish, or Cantonese speaking were included. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Content analysis was used to code the transcribed interviews and develop the family-centered care model. Three major themes emerged: 1) thorough, timely, compassionate communication, 2) capacity building for families, providers, and facilities, and 3) coordination of care transitions. Participants reported valuing detailed, frequent communication that set realistic expectations and prepared them for decision making and outcomes. Areas for capacity building included strategies to increase provider cultural humility, parent participation in care, and institutional flexibility. Coordinated care transitions, including continuity of information and maintenance of partnerships with families and care teams, were highlighted. Participants who were not primarily English speaking reported particular difficulty with communication, cultural understanding, and coordinated transitions. CONCLUSIONS: This study presents a family-centered traumatic brain injury care model based on family perspectives. In addition to communication and coordination strategies, the model offers methods to address cultural and structural barriers to meeting the needs of non-English-speaking families. Given the stress experienced by families of children with traumatic brain injury, careful consideration of the model themes identified here may assist in improving overall quality of care to families of hospitalized children with traumatic brain injury.

Finding A Seat at the Table Together: Recommendations for Improving Collaboration between Social Work and Bioethics.

Social work and bioethics are fields deeply committed to cross-disciplinary collaboration to do their respective work. While scholars and practitioners from both fields share a commitment to social justice and to respecting the dignity, integrity and the worth of all persons, the overlap between the fields, including shared values, has received little attention. The purpose of this article is to describe the ways in which greater collaboration between the two fields can broaden their scope, enrich their scholarship, and better ground their practice. We describe the potential for realizing such benefits in two areas - health care ethics consultation and social inequalities in health - arguing that the fields both complement and challenge one another, making them ideal partners for the interdisciplinary inquiry and problem-solving so often called for today in health and health care.

Race, income, and education: associations with patient and family ratings of end-of-life care and communication provided by physicians-in-training.

BACKGROUND: Minority race and lower socioeconomic status are associated with poorer patient ratings of health care quality and provider communication. OBJECTIVE: To examine the association of race/ethnicity or socioeconomic status with patients' and families' ratings of end-of-life care and communication about end-of-life care provided by physicians-in-training. METHODS: As a component of a randomized trial evaluating a program designed to improve clinician communication about end-of-life care, patients and patients' families completed preintervention survey data regarding care and communication provided by internal medicine residents and medical subspecialty fellows. We examined associations between patient and family race or socioeconomic status and ratings they gave trainees on two questionnaires: the Quality of End-of-Life Care (QEOLC) and Quality of Communication (QOC). RESULTS: Patients from racial/ethnic minority groups, patients with lower income, and patients with lower educational attainment gave trainees higher ratings on the end-of-life care subscale of the QOC (QOCeol). In path models, patient educational attainment and income had a direct effect on outcomes, while race/ethnicity did not. Lower family educational attainment was also associated with higher trainee ratings on the QOCeol, while family non-white race was associated with lower trainee ratings on the QEOLC and general subscale of the QOC. CONCLUSIONS: Patient race is associated with perceptions of the quality of communication about end-of-life care provided by physicians-in-training, but the association was opposite to our hypothesis and appears to be mediated by socioeconomic status. Family member predictors of these perceptions differ from those observed for patients. Further investigation of these associations may guide interventions to improve care delivered to patients and families.

The influence of race/ethnicity and socioeconomic status on end-of-life care in the ICU.

BACKGROUND: There is conflicting evidence about the influence of race/ethnicity on the use of intensive care at the end of life, and little is known about the influence of socioeconomic status. METHODS: We examined patients who died in the ICU in 15 hospitals. Race/ethnicity was assessed as white and nonwhite. Socioeconomic status included patient education, health insurance, and income by zip code. To explore differences in end-of-life care, we examined the use of (1) advance directives, (2) life-sustaining therapies, (3) symptom management, (4) communication, and (5) support services. RESULTS: Medical charts were abstracted for 3,138/3,400 patients of whom 2,479 (79%) were white and 659 (21%) were nonwhite (or Hispanic). In logistic regressions adjusted for patient demographics, socioeconomic factors, and site, nonwhite patients were less likely to have living wills (OR, 0.41; 95% CI, 0.32-0.54) and more likely to die with full support (OR, 1.59; 95% CI, 1.30-1.94). In documentation of family conferences, nonwhite patients were more likely to have documentation that prognosis was discussed (OR, 1.47; 95% CI, 1.21-1.77) and that physicians recommended withdrawal of life support (OR, 1.57; 95% CI, 1.11-2.21). Nonwhite patients also were more likely to have discord documented among family members or with clinicians (OR, 1.49; 95% CI, 1.04-2.15). Socioeconomic status did not modify these associations and was not a consistent predictor of end-of-life care. CONCLUSIONS: We found numerous racial/ethnic differences in end-of-life care in the ICU that were not influenced by socioeconomic status. These differences could be due to treatment preferences, disparities, or both. Improving ICU end-of-life care for all patients and families will require a better understanding of these issues. TRIAL REGISTRY: ClinicalTrials.gov; No.: NCT00685893; URL: www.clinicaltrials.gov.

Effect of a quality-improvement intervention on end-of-life care in the intensive care unit: a randomized trial.

RATIONALE: Because of high mortality, end-of-life care is an important component of intensive care. OBJECTIVES: We evaluated the effectiveness of a quality-improvement intervention to improve intensive care unit (ICU) end-of-life care. METHODS: We conducted a cluster-randomized trial randomizing 12 hospitals. The intervention targeted clinicians with five components: clinician education, local champions, academic detailing, clinician feedback of quality data, and system supports. Outcomes were assessed for patients dying in the ICU or within 30 hours of ICU discharge using surveys and medical record review. Families completed Quality of Dying and Death (QODD) and satisfaction surveys. Nurses completed the QODD. Data were collected during baseline and follow-up at each hospital (May 2004 to February 2008). We used robust regression models to test for intervention effects, controlling for site, patient, family, and nurse characteristics. MEASUREMENTS AND MAIN RESULTS: All hospitals completed the trial with 2,318 eligible patients and target sample sizes obtained for family and nurse surveys. The primary outcome, family-QODD, showed no change with the intervention (P = 0.33). There was no change in family satisfaction (P = 0.66) or nurse-QODD (P = 0.81). There was a nonsignificant increase in ICU days before death after the intervention (hazard ratio = 0.9; P = 0.07). Among patients undergoing withdrawal of mechanical ventilation, there was no change in time from admission to withdrawal (hazard ratio = 1.0; P = 0.81). CONCLUSIONS: We found this intervention was associated with no improvement in quality of dying and no change in ICU length of stay before death or time from ICU admission to withdrawal of life-sustaining measures. Improving ICU end-of-life care will require interventions with more direct contact with patients and families. Clinical trial registered with www.clinicaltrials.gov (NCT00685893).

Nurses' identification of important yet under-utilized end-of-life care skills for patients with life-limiting or terminal illnesses.

RATIONALE: This study was designed to identify nurses' perspectives on nursing skills that are important yet under-utilized in end-of-life care. METHODS: A 45-item survey was administered to nurses (n = 717) in four U.S. states with a response rate of 79%. We identified skills that were endorsed by more than 60% of nurses as extremely important and also endorsed as not currently practiced by more than 25% of nurses. We used Chi square statistics to examine professional characteristics associated with ratings of end-of-life care skills including practice settings, years of experience, and end-of-life care education. Content analysis was used to examine nurses' responses to open-ended questions. RESULTS: Nineteen items were endorsed as extremely important and also ranked as under-utilized. These end-of-life care skills included communication skills, symptom management competencies especially those concerning anxiety and depression, and issues related to patient-centered care systems. Four complementary themes emerged from qualitative analysis of nurses' comments, which supported the quantitative findings. CONCLUSIONS: This study provides a summary of skills nurses feel are important and under-utilized in their care of patients with life-limiting illnesses. The findings support the need to target both nursing education and healthcare system interventions to improve the use of practical end-of-life care skills by nurses with a focus on communication and symptom management skills.

Measuring the quality of end-of-life care.

CONTEXT: Although there is a documented need to improve end-of-life care, there are few validated and brief questionnaires that are available as outcome measures for use in improving that care. OBJECTIVES: To examine the measurement characteristics of the Quality of End-of-Life Care (QEOLC) questionnaire. METHODS: In a multisite, cross-sectional study of a mailed questionnaire, patients with life-limiting illnesses, their families, and nurses completed the QEOLC questionnaire. Patients and nurses were identified by physicians, and families were identified by participating patients. Physicians included general internists, oncologists, cardiologists, and pulmonologists from the Southeast and Pacific Northwest of the United States. RESULTS: Eight hundred one patients, 310 of their families, and 885 nurses were identified by 85 physicians. Using structural equation modeling techniques corrected for clustering under physicians, we identified a patient-specific factor based on 11 items, a family-specific factor based on 22 items, a nurse-specific factor based on 11 items, and a common single-factor solution based on 10 items. Construct validity was supported by significant associations in the hypothesized direction between the identified QEOLC factors and each of the following: physician palliative care knowledge, patients' and families' ratings of overall quality of care, and patients' levels of symptom distress. CONCLUSION: Although continued testing in heterogeneous samples is necessary, the current study supported the construct validity of the QEOLC questionnaire to assess physician skill at end-of-life care, thereby providing valid measures of quality end-of-life care. Furthermore, this approach is a model for development and validation of patient- and family-centered assessments of quality of care.