Assessment of Symptom, Disability, and Financial Trajectories in Patients Hospitalized for COVID-19 at 6 Months.

Importance: Individuals who survived COVID-19 often report persistent symptoms, disabilities, and financial consequences. However, national longitudinal estimates of symptom burden remain limited. Objective: To measure the incidence and changes over time in symptoms, disability, and financial status after COVID-19-related hospitalization. Design, Setting, and Participants: A national US multicenter prospective cohort study with 1-, 3-, and 6-month postdischarge visits was conducted at 44 sites participating in the National Heart, Lung, and Blood Institute Prevention and Early Treatment of Acute Lung Injury Network's Biology and Longitudinal Epidemiology: COVID-19 Observational (BLUE CORAL) study. Participants included hospitalized English- or Spanish-speaking adults without severe prehospitalization disabilities or cognitive impairment. Participants were enrolled between August 24, 2020, and July 20, 2021, with follow-up occurring through March 30, 2022. Exposure: Hospitalization for COVID-19 as identified with a positive SARS-CoV-2 molecular test. Main Outcomes and Measures: New or worsened cardiopulmonary symptoms, financial problems, functional impairments, perceived return to baseline health, and quality of life. Logistic regression was used to identify factors associated with new cardiopulmonary symptoms or financial problems at 6 months. Results: A total of 825 adults (444 [54.0%] were male, and 379 [46.0%] were female) met eligibility criteria and completed at least 1 follow-up survey. Median age was 56 (IQR, 43-66) years; 253 (30.7%) participants were Hispanic, 145 (17.6%) were non-Hispanic Black, and 360 (43.6%) were non-Hispanic White. Symptoms, disabilities, and financial problems remained highly prevalent among hospitalization survivors at month 6. Rates increased between months 1 and 6 for cardiopulmonary symptoms (from 67.3% to 75.4%; P = .001) and fatigue (from 40.7% to 50.8%; P < .001). Decreases were noted over the same interval for prevalent financial problems (from 66.1% to 56.4%; P < .001) and functional limitations (from 55.3% to 47.3%; P = .004). Participants not reporting problems at month 1 often reported new symptoms (60.0%), financial problems (23.7%), disabilities (23.8%), or fatigue (41.4%) at month 6. Conclusions and Relevance: The findings of this cohort study of people discharged after COVID-19 hospitalization suggest that recovery in symptoms, functional status, and fatigue was limited at 6 months, and some participants reported new problems 6 months after hospital discharge.

Differences in US Regional Healthcare Allocation Guidelines During the COVID-19 Pandemic.

BACKGROUND: Hospitals faced unprecedented scarcity of resources without parallel in modern times during the COVID-19 pandemic. This scarcity led healthcare systems and states to develop or modify scarce resource allocation guidelines that could be implemented during "crisis standards of care" (CSC). CSC describes a significant change in healthcare operations and the level of care provided during a public health emergency. OBJECTIVE: Our study provides a comprehensive examination of the latest CSC guidelines in the western region of the USA, where Alaska and Idaho declared CSC, focusing on ethical issues and health disparities. DESIGN: Mixed-methods survey study of physicians and/or ethicists and review of healthcare system and state allocation guidelines. PARTICIPANTS: Ten physicians and/or ethicists who participated in scarce resource allocation guideline development from seven healthcare systems or three state-appointed committees from the western region of the USA including Alaska, California, Idaho, Oregon, and California. RESULTS: All sites surveyed developed allocation guidelines, but only four (40%) were operationalized either statewide or for specific scarce resources. Most guidelines included comorbidities (70%), and half included adjustments for socioeconomic disadvantage (50%), while only one included specific priority groups (10%). Allocation tiebreakers included the life cycle principle and random number generators. Six guidelines evolved over time, removing restrictions such as age, severity of illness, and comorbidities. Additional palliative care (20%) and ethics (50%) resources were planned by some guidelines. CONCLUSIONS: Allocation guidelines are essential to support clinicians during public health emergencies; however, significant deficits and differences in guidelines were identified that may perpetuate structural inequities and racism. While a universal triage protocol that is equally accepted by all communities is unlikely, the lack of regional agreement on standards with justification and transparency has the potential to erode public trust and perpetuate inequity.

Prevalence, Characteristics, and Outcomes of Emergency Department Discharge Among Patients With Sepsis.

Importance: Sepsis guidelines and research have focused on patients with sepsis who are admitted to the hospital, but the scope and implications of sepsis that is managed in an outpatient setting are largely unknown. Objective: To identify the prevalence, risk factors, practice variation, and outcomes for discharge to outpatient management of sepsis among patients presenting to the emergency department (ED). Design, Setting, and Participants: This cohort study was conducted at the EDs of 4 Utah hospitals, and data extraction and analysis were performed from 2017 to 2021. Participants were adult ED patients who presented to a participating ED from July 1, 2013, to December 31, 2016, and met sepsis criteria before departing the ED alive and not receiving hospice care. Exposures: Patient demographic and clinical characteristics, health system parameters, and ED attending physician. Main Outcomes and Measures: Information on ED disposition was obtained from electronic medical records, and 30-day mortality data were acquired from Utah state death records and the US Social Security Death Index. Factors associated with ED discharge rather than hospital admission were identified using penalized logistic regression. Variation in ED discharge rates between physicians was estimated after adjustment for potential confounders using generalized linear mixed models. Inverse probability of treatment weighting was used in the primary analysis to assess the noninferiority of outpatient management for 30-day mortality (noninferiority margin of 1.5%) while adjusting for multiple potential confounders. Results: Among 12 333 ED patients with sepsis (median [IQR] age, 62 [47-76] years; 7017 women [56.9%]) who were analyzed in the study, 1985 (16.1%) were discharged from the ED. After penalized regression, factors associated with ED discharge included age (adjusted odds ratio [aOR], 0.90 per 10-y increase; 95% CI, 0.87-0.93), arrival to ED by ambulance (aOR, 0.61; 95% CI, 0.52-0.71), organ failure severity (aOR, 0.58 per 1-point increase in the Sequential Organ Failure Assessment score; 95% CI, 0.54-0.60), and urinary tract (aOR, 4.56 [95% CI, 3.91-5.31] vs pneumonia), intra-abdominal (aOR, 0.51 [95% CI, 0.39-0.65] vs pneumonia), skin (aOR, 1.40 [95% CI, 1.14-1.72] vs pneumonia) or other source of infection (aOR, 1.67 [95% CI, 1.40-1.97] vs pneumonia). Among 89 ED attending physicians, adjusted ED discharge probability varied significantly (likelihood ratio test, P < .001), ranging from 8% to 40% for an average patient. The unadjusted 30-day mortality was lower in discharged patients than admitted patients (0.9% vs 8.3%; P < .001), and their adjusted 30-day mortality was noninferior (propensity-adjusted odds ratio, 0.21 [95% CI, 0.09-0.48]; adjusted risk difference, 5.8% [95% CI, 5.1%-6.5%]; P < .001). Alternative confounder adjustment strategies yielded odds ratios that ranged from 0.21 to 0.42. Conclusions and Relevance: In this cohort study, discharge to outpatient treatment of patients who met sepsis criteria in the ED was more common than previously recognized and varied substantially between ED physicians, but it was not associated with higher mortality compared with hospital admission. Systematic, evidence-based strategies to optimize the triage of ED patients with sepsis are needed.

Continuing Cardiopulmonary Symptoms, Disability, and Financial Toxicity 1 Month After Hospitalization for Third-Wave COVID-19: Early Results From a US Nationwide Cohort.

BACKGROUND: Patients discharged after COVID-19 report ongoing needs. OBJECTIVES: To measure incident symptoms after COVID-19 hospitalization. DESIGN, SETTING, AND PARTICIPANTS: Preplanned early look at 1-month follow-up surveys from patients hospitalized August 2020 to January 2021 in NHLBI PETAL Network's Biology and Longitudinal Epidemiology: COVID-19 Observational (BLUE CORAL) study. English- or Spanish-speaking hospitalized adults without substantial pre-COVID-19 disability with a positive molecular test for SARS-CoV-2. RESULTS: Overall, 253 patients were hospitalized for a median of 5 days (interquartile range [IQR], 3-8), and had a median age of 60 years (IQR, 45-68). By race/ethnicity, 136 (53.8%) were non-Hispanic White, 23 (9.1%) were non-Hispanic Black, and 83 (32.8%) were Hispanic. Most (139 [54.9%]) reported a new or worsened cardiopulmonary symptom, and 16% (n = 39) reported new or increased oxygen use; 213 (84.2%) patients reported not feeling fully back to their pre-COVID-19 level of functioning. New limitations in activities of daily living were present in 130 (52.8%) patients. Financial toxicities, including job loss or change (49 [19.8%]), having a loved one take time off (93 [37.8%]), and using up one's savings (58 [23.2%]), were common. Longer lengths of hospital stay were associated with greater odds of 1-month cardiopulmonary symptoms (adjusted odds ratio [aOR], 1.82 per additional week in the hospital; 95% CI, 1.11-2.98) and new disability (aOR, 2.06; 95% CI, 1.21-3.53). There were not uniform demographic patterns of association. LIMITATIONS: We prioritized patients' reports of their own incident problems over objective testing. CONCLUSION: Patients who survived COVID-19 in the United States during late 2020/early 2021 still faced new burdens 1 month after hospital discharge.

The Influence of the COVID-19 Pandemic on ICU Organization, Care Processes, and Frontline Clinician Experiences: A Qualitative Study.

BACKGROUND: The COVID-19 pandemic resulted in unprecedented adjustments to ICU organization and care processes globally. RESEARCH QUESTIONS: Did hospital emergency responses to the COVID-19 pandemic differ depending on hospital setting? Which strategies worked well to mitigate strain as perceived by intensivists? STUDY DESIGN AND METHODS: Between August and November 2020, we carried out semistructured interviews of intensivists from tertiary and community hospitals across six regions in the United States that experienced early or large surges of COVID-19 patients, or both. We identified themes of hospital emergency responses using the four S framework of acute surge planning: space, staff, stuff, system. RESULTS: Thirty-three intensivists from seven tertiary and six community hospitals participated. Clinicians across both settings believed that canceling elective surgeries was helpful to increase ICU capabilities and that hospitals should establish clearly defined thresholds at which surgeries are limited during future surge events. ICU staff was the most limited resource; staff shortages were improved by the use of tiered staffing models, just-in-time training for non-ICU clinicians, designated treatment teams, and deployment of trainees. Personal protective equipment (PPE) shortages and reuse were widespread, causing substantial distress among clinicians; hands-on PPE training was helpful to reduce clinicians' anxiety. Transparency and involvement of frontline clinicians as stakeholders were important components of effective emergency responses and helped to maintain trust among staff. INTERPRETATION: We identified several strategies potentially to mitigate strain as perceived by intensivists working in both tertiary and community hospital settings. Our study also demonstrated the importance of trust and transparency between frontline staff and hospital leadership as key components of effective emergency responses during public health crises.

Variation in Initial U.S. Hospital Responses to the Coronavirus Disease 2019 Pandemic.

OBJECTIVES: The coronavirus disease 2019 pandemic has strained many healthcare systems. In response, U.S. hospitals altered their care delivery systems, but there are few data regarding specific structural changes. Understanding these changes is important to guide interpretation of outcomes and inform pandemic preparedness. We sought to characterize emergency responses across hospitals in the United States over time and in the context of local case rates early in the coronavirus disease 2019 pandemic. DESIGN: We surveyed hospitals from a national acute care trials group regarding operational and structural changes made in response to the coronavirus disease 2019 pandemic from January to August 2020. We collected prepandemic characteristics and changes to hospital system, space, staffing, and equipment during the pandemic. We compared the timing of these changes with county-level coronavirus disease 2019 case rates. SETTING AND PARTICIPANTS: U.S. hospitals participating in the Prevention and Early Treatment of Acute Lung Injury Network Coronavirus Disease 2019 Observational study. Site investigators at each hospital collected local data. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Forty-five sites participated (94% response rate). System-level changes (incident command activation and elective procedure cancellation) occurred at nearly all sites, preceding rises in local case rates. The peak inpatient census during the pandemic was greater than the prior hospital bed capacity in 57% of sites with notable regional variation. Nearly half (49%) expanded ward capacity, and 63% expanded ICU capacity, with nearly all bed expansion achieved through repurposing of clinical spaces. Two-thirds of sites adapted staffing to care for patients with coronavirus disease 2019, with 48% implementing tiered staffing models, 49% adding temporary physicians, nurses, or respiratory therapists, and 30% changing the ratios of physicians or nurses to patients. CONCLUSIONS: The coronavirus disease 2019 pandemic prompted widespread system-level changes, but front-line clinical care varied widely according to specific hospital needs and infrastructure. Linking operational changes to care delivery processes is a necessary step to understand the impact of the coronavirus disease 2019 pandemic on patient outcomes.

Lung-Protective Ventilation and Associated Outcomes and Costs Among Patients Receiving Invasive Mechanical Ventilation in the ED.

BACKGROUND: Invasive mechanical ventilation is often initiated in the ED, and mechanically ventilated patients may be kept in the ED for hours before ICU transfer. Although lung-protective ventilation is beneficial, particularly in ARDS, it remains uncertain how often lung-protective tidal volumes are used in the ED, and whether lung-protective ventilation in this setting impacts patient outcomes. RESEARCH QUESTION: What is the association between the use of lung-protective ventilation in the ED and outcomes among invasively ventilated patients? STUDY DESIGN AND METHODS: A retrospective analysis (2011-2017) of a prospective registry from eight EDs enrolling consecutive adult patients (≥ 18 years) who received invasive mechanical ventilation in the ED was performed. Lung-protective ventilation was defined by use of tidal volumes ≤ 8 mL/kg predicted body weight. The primary outcome was hospital mortality. Secondary outcomes included development of ARDS, hospital length of stay, and total hospital costs. RESULTS: The study included 4,174 patients, of whom 2,437 (58.4%) received lung-protective ventilation in the ED. Use of lung-protective ventilation was associated with decreased odds of hospital death (adjusted OR [aOR], 0.91; 95% CI, 0.84-0.96) and development of ARDS (aOR, 0.87; 95% CI, 0.81-0.92). Patients who received lung-protective ventilation in the ED had shorter median duration of mechanical ventilation (4 vs 5 days; P < 0.01), shorter median hospital length of stay (11 vs 14 days; P < .001), and reduced total hospital costs (Can$44,348 vs Can$52,484 [US$34,153 vs US$40,418]; P = .03) compared with patients who received higher tidal volumes. INTERPRETATION: Use of lung-protective ventilation in the ED was associated with important patient- and system-centered outcomes, including lower hospital mortality, decreased incidence of ARDS, lower hospital length of stay, and decreased total costs. Protocol development promoting the regular use of lung-protective ventilation in the ED may be of value.

Financial Toxicity After Acute Respiratory Distress Syndrome: A National Qualitative Cohort Study.

OBJECTIVES: The financial burdens and subsequent related distress of medical care, referred to as financial toxicity, may limit access to beneficial treatments. However, financial toxicity after acute care is less described-and may be an important but underexplored mechanism preventing full recovery after critical illnesses such as acute respiratory distress syndrome. We sought to identify the mechanisms by which financial toxicity manifested in patients with acute respiratory distress syndrome, protective factors against such toxicity, and the consequences of financial toxicity to survivors' lives following acute respiratory distress syndrome. DESIGN: We conducted semistructured interviews following patients' hospitalization and during recovery as an ancillary study to a multicenter randomized clinical trial in acute respiratory distress syndrome. Patients were 9-16 months post randomization at the time of interview. SETTING AND PARTICIPANTS: The Reevaluation Of Systemic Early Neuromuscular Blockade trial examined the use of early neuromuscular blockade in mechanically ventilated patients with moderate/severe acute respiratory distress syndrome. We recruited consecutive surviving patients who were English speaking, consented to follow-up, and were randomized between December 11, 2017, and May 4, 2018 (n = 79) from 29 U.S. sites. MEASUREMENTS AND MAIN RESULTS: We asked about patients' perceptions of financial burden(s) that they associated with their acute respiratory distress syndrome hospitalization. Forty-six of 79 eligible acute respiratory distress syndrome survivors (58%) participated (from 22 sites); their median age was 56 (interquartile range 47-62). Thirty-one of 46 reported at least one acute respiratory distress syndrome-related financial impact. Financial toxicity manifested via medical bills, changes in insurance coverage, and loss of employment income. Respondents reported not working prior to acute respiratory distress syndrome, using Medicaid or Medicare, or, conversely, generous work benefits as factors which may have limited financial burdens. Patients reported multiple consequences of acute respiratory distress syndrome-related financial toxicity, including harms to their mental and physical health, increased reliance on others, and specific material hardships. CONCLUSIONS: Financial toxicity related to critical illness is common and may limit patients' emotional, physical, and social recovery after acute respiratory distress syndrome hospitalization for at least a year.

The Patient and Family Member Experience of Financial Stress Related to Critical Illness.

Background: The experience of financial stress during and after critical illness for patients and their family is poorly understood. Objectives: Our objectives were to (1) explore common financial concerns, their contribution to emotional stress, and potential opportunities for interventions to reduce financial stress in patients with critical illness and their family members; and (2) confirm patient and family members' willingness to provide information on this topic. Design: Cross-sectional survey study. Setting/Subjects: Patients (18/24, response rate 75%) and their family members (32/58, response rate 55%) from two prior randomized trials at an urban, level 1 Trauma center. Results: Ten (56%) patients and 19 (70%) family members reported financial worries during an intensive care unit (ICU) stay; 70% of both groups reported financial worries post-ICU discharge. Thirty percent (3/10) of patients and 43% (10/23) of family members who were not asked about financial concerns by hospital staff wished that they had been asked. Both patients and family believed that it would have been helpful to have information about insurance coverage, interpreting hospital bills, and estimated out-of-pocket costs. Among patients, 47% favored receiving these services after the ICU stay (7/15), while 20% (3/15) preferred these services in the ICU; 73% of family members preferred receiving them during the ICU stay (22/30), while 27% (8/30) preferred these services after the ICU stay. Conclusion: Our findings suggest that the experience of financial stress and the worry it causes during and after critical illness are common and potentially modifiable with simple targeted interventions.

Prospective Assessment of the Feasibility of a Trial of Low-Tidal Volume Ventilation for Patients with Acute Respiratory Failure.

RATIONALE: Low-tidal volume ventilation (LTVV; 6 ml/kg) benefits patients with acute respiratory distress syndrome and may aid those with other causes of respiratory failure. Current early ventilation practices are poorly defined. OBJECTIVES: We observed patients with acute respiratory failure to assess the feasibility of a pragmatic trial of LTVV and to guide experimental design. METHODS: We prospectively enrolled consecutive patients with acute respiratory failure admitted to intensive care units expected to participate in the proposed trial. We collected clinical data as well as information on initial and daily ventilator settings and inpatient mortality. We estimated the benefit of LTVV using predictive linear and nonlinear models. We simulated models to estimate power and feasibility of a cluster-randomized trial of LTVV versus usual care in acute respiratory failure. RESULTS: We included 2,484 newly mechanically ventilated patients (31% with acute respiratory distress syndrome) from 49 hospitals. Hospital mortality was 28%. Mean initial tidal volume was 7.1 ml/kg predicted body weight (95% confidence interval, 7.1-7.2), with 78% of patients receiving tidal volumes less than or equal to 8 ml/kg. Our models estimated a mortality benefit of 0-2% from LTVV compared with usual care. Simulation of a stepped-wedged cluster-randomized trial suggested that enrollment of 106,361 patients would be necessary to achieve greater than 90% power. CONCLUSIONS: Use of initial tidal volumes less than 8 ml/kg predicted body weight was common at hospitals participating in the National Heart, Lung, and Blood Institute Prevention and Early Treatment of Acute Lung Injury (PETAL) Network. After considering the size and budgetary requirement for a cluster-randomized trial of LTVV versus usual care in acute respiratory failure, the PETAL Network deemed the proposed trial infeasible. A rapid observational study and simulations to model anticipated power may help better design trials.

Prevalence, Risk Factors, and Outcomes of Financial Stress in Survivors of Critical Illness.

OBJECTIVES: Little is known about the experience of financial stress for patients who survive critical illness or their families. Our objective was to describe the prevalence of financial stress among critically ill patients and their families, identify clinical and demographic characteristics associated with this stress, and explore associations between financial stress and psychologic distress. DESIGN: Secondary analysis of a randomized trial comparing a coping skills training program and an education program for patients surviving acute respiratory failure and their families. SETTING: Five geographically diverse hospitals. PARTICIPANTS: Patients (n = 175) and their family members (n = 85) completed surveys within 2 weeks of arrival home and 3 and 6 months after randomization. MEASUREMENTS AND MAIN RESULTS: We used regression analyses to assess associations between patient and family characteristics at baseline and financial stress at 3 and 6 months. We used path models and mediation analyses to explore relationships between financial stress, symptoms of anxiety and depression, and global mental health. Serious financial stress was high at both time points and was highest at 6 months (42.5%) among patients and at 3 months (48.5%) among family members. Factors associated with financial stress included female sex, young children at home, and baseline financial discomfort. Experiencing financial stress had direct effects on symptoms of anxiety (ß = 0.260; p < 0.001) and depression (ß = 0.048; p = 0.048). CONCLUSIONS: Financial stress after critical illness is common and associated with symptoms of anxiety and depression. Our findings provide direction for potential interventions to reduce this stress and improve psychologic outcomes for patients and their families.

Relationship between Race and the Effect of Fluids on Long-term Mortality after Acute Respiratory Distress Syndrome. Secondary Analysis of the National Heart, Lung, and Blood Institute Fluid and Catheter Treatment Trial.

RATIONALE: Short-term follow-up in the Fluid and Catheter Treatment Trial (FACTT) suggested differential mortality by race with conservative fluid management, but no significant interaction. OBJECTIVE: In a post hoc analysis of FACTT including 1-year follow-up, we sought to estimate long-term mortality by race and test for an interaction between fluids and race. METHODS: We performed a post hoc analysis of FACTT and the Economic Analysis of Pulmonary Artery Catheters (EAPAC) study (which included 655 of the 1,000 FACTT patients with near-complete 1-year follow up). We fit a multistate Markov model to estimate 1-year mortality for all non-Hispanic black and white randomized FACTT subjects. The model estimated the distribution of time from randomization to hospital discharge or hospital death (available on all patients) and estimated the distribution of time from hospital discharge to death using data on patients after hospital discharge for patients in EAPAC. The 1-year mortality was found by combining these estimates. RESULTS: Non-Hispanic black (n = 217, 25%) or white identified subjects (n = 641, 75%) were included. There was a significant interaction between race and fluid treatment (P = 0.012). One-year mortality was lower for black subjects assigned to conservative fluids (38 vs. 54%; mean mortality difference, 16%; 95% confidence interval, 2-30%; P = 0.027 between conservative and liberal). Conversely, 1-year mortality for white subjects was 35% versus 30% for conservative versus liberal arms (mean mortality difference, -4.8%; 95% confidence interval, -13% to 3%; P = 0.23). CONCLUSIONS: In our cohort, conservative fluid management may have improved 1-year mortality for non-Hispanic black patients with ARDS. However, we found no long-term benefit of conservative fluid management in white subjects.

Improving ICU-Based Palliative Care Delivery: A Multicenter, Multidisciplinary Survey of Critical Care Clinician Attitudes and Beliefs.

OBJECTIVE: Addressing the quality gap in ICU-based palliative care is limited by uncertainty about acceptable models of collaborative specialist and generalist care. Therefore, we characterized the attitudes of physicians and nurses about palliative care delivery in an ICU environment. DESIGN: Mixed-methods study. SETTING: Medical and surgical ICUs at three large academic hospitals. PARTICIPANTS: Three hundred three nurses, intensivists, and advanced practice providers. MEASUREMENTS AND MAIN RESULTS: Clinicians completed written surveys that assessed attitudes about specialist palliative care presence and integration into the ICU setting, as well as acceptability of 23 published palliative care prompts (triggers) for specialist consultation. Most (n = 225; 75%) reported that palliative care consultation was underutilized. Prompting consideration of eligibility for specialist consultation by electronic health record searches for triggers was most preferred (n = 123; 41%); only 17 of them (6%) felt current processes were adequate. The most acceptable specialist triggers were metastatic malignancy, unrealistic goals of care, end of life decision making, and persistent organ failure. Advanced age, length of stay, and duration of life support were the least acceptable. Screening led by either specialists or ICU teams was equally preferred. Central themes derived from qualitative analysis of 65 written responses to open-ended items included concerns about the roles of physicians and nurses, implementation, and impact on ICU team-family relationships. CONCLUSIONS: Integration of palliative care specialists in the ICU is broadly acceptable and desired. However, the most commonly used current triggers for prompting specialist consultation were among the least well accepted, while more favorable triggers are difficult to abstract from electronic health record systems. There is also disagreement about the role of ICU nurses in palliative care delivery. These findings provide important guidance to the development of collaborative care models for the ICU setting.

The epidemiology of chronic critical illness in the United States*.

OBJECTIVES: The epidemiology of chronic critical illness is not well characterized. We sought to determine the prevalence, outcomes, and associated costs of chronic critical illness in the United States. DESIGN: Population-based cohort study using data from the United States Healthcare Costs and Utilization Project from 2004 to 2009. SETTING: Acute care hospitals in Massachusetts, North Carolina, Nebraska, New York, and Washington. PATIENTS: Adult and pediatric patients meeting a consensus-derived definition for chronic critical illness, which included one of six eligible clinical conditions (prolonged acute mechanical ventilation, tracheotomy, stroke, traumatic brain injury, sepsis, or severe wounds) plus at least 8 days in an ICU. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Out of 3,235,741 admissions to an ICU during the study period, 246,151 (7.6%) met the consensus definition for chronic critical illness. The most common eligibility conditions were prolonged acute mechanical ventilation (72.0% of eligible admissions) and sepsis (63.7% of eligible admissions). Among patients meeting chronic critical illness criteria through sepsis, the infections were community acquired in 48.5% and hospital acquired in 51.5%. In-hospital mortality was 30.9% with little change over the study period. The overall population-based prevalence was 34.4 per 100,000. The prevalence varied substantially with age, peaking at 82.1 per 100,000 individuals 75-79 years old but then declining coincident with a rise in mortality before day 8 in otherwise eligible patients. Extrapolating to the entire United States, for 2009, we estimated a total of 380,001 cases; 107,880 in-hospital deaths and $26 billion in hospital-related costs. CONCLUSIONS: Using a consensus-based definition, the prevalence, hospital mortality, and costs of chronic critical illness are substantial. Chronic critical illness is particularly common in the elderly although in very old patients the prevalence declines, in part because of an increase in early mortality among potentially eligible patients.

A multicenter study of key stakeholders' perspectives on communicating with surrogates about prognosis in intensive care units.

RATIONALE: Surrogates of critically ill patients often have inaccurate expectations about prognosis. Yet there is little research on how intensive care unit (ICU) clinicians should discuss prognosis, and existing expert opinion-based recommendations give only general guidance that has not been validated with surrogate decision makers. OBJECTIVE: To determine the perspectives of key stakeholders regarding how prognostic information should be conveyed in critical illness. METHODS: This was a multicenter study at three academic medical centers in California, Pennsylvania, and Washington. One hundred eighteen key stakeholders completed in-depth semistructured interviews. Participants included 47 surrogates of adult patients with acute respiratory distress syndrome; 45 clinicians working in study ICUs, including physicians, nurses, social workers, and spiritual care providers; and 26 experts in health communication, decision science, ethics, family-centered care, geriatrics, healthcare disparities, palliative care, psychology, psychiatry, and critical care. MEASUREMENTS AND MAIN RESULTS: There was broad support among surrogates for existing expert recommendations, including truthful prognostic disclosure, emotional support, tailoring the disclosure strategy to each family's needs, and checking for understanding. In addition, stakeholders offered suggestions that add specificity to existing recommendations, including: (1) In addition to conveying prognostic estimates, clinicians should help families "see the prognosis for themselves" by showing families radiographic images and explaining the clinical significance of physical manifestations of severe disease at the bedside. (2) Many physicians did not support using numeric estimates to convey prognosis to families, whereas many surrogates, clinicians from other disciplines, and experts believed numbers could be helpful. (3) Clinicians should conceptualize prognostic communication as an iterative process that begins with a preliminary mention of the possibility of death early in the ICU stay and becomes more detailed as the clinical situation develops. (4) Although prognostic information should be initially disclosed by physicians, other members of the multidisciplinary team-nurses, social workers, and spiritual care providers-should be given explicit role responsibilities to reinforce physicians' prognostications and help families process a poor prognosis emotionally. CONCLUSIONS: Family members, clinicians, and experts identified specific communication behaviors that clinicians should use to discuss prognosis in the critical care setting. These findings extend existing opinion-based recommendations and should guide interventions to improve communication about prognosis in ICUs.

Long-term survival in patients with severe acute respiratory distress syndrome and rescue therapies for refractory hypoxemia*.

OBJECTIVES: To describe long-term survival in patients with severe acute respiratory distress syndrome and assess differences in patient characteristics and outcomes among those who receive rescue therapies (prone position ventilation, inhaled nitric oxide, or inhaled epoprostenol) versus conventional treatment. DESIGN: Cohort study of patients with severe hypoxemia. SETTING: University-affiliated level 1 trauma center. PATIENTS: Patients diagnosed with severe acute respiratory distress syndrome within 72 hours of ICU admission between January 1, 2008, and December 31, 2011. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Data were abstracted from the medical record and included demographic and clinical variables, hospital and ICU length of stay, discharge disposition, and hospital costs. Patient-level data were linked to the Washington State Death Registry. Kaplan-Meier methods and Cox's proportional hazards models were used to estimate survival and hazard ratios. Four hundred twenty-eight patients meeting study inclusion criteria were identified; 62 (14%) were initiated on a rescue therapy. PaO2/FIO2 ratios were comparable at admission between patients treated with a rescue therapy and those treated conventionally but were substantially lower by 72 hours in those who received rescue therapies (54 ± 17 vs 69 ± 17 mm Hg; p < 0.01). For the entire cohort, estimated survival probability at 3 years was 55% (95% CI, 51-61%). Among 280 hospital survivors (65%), 3-year survival was 85% (95% CI, 80-89%). The relative hazard of in-hospital mortality was 68% higher among patients who received rescue therapy compared with patients treated conventionally (95% CI, 8-162%; p = 0.02). For long-term survival, the hazard ratio of death following ICU admission was 1.56 (95% CI, 1.02-2.37; p = 0.04), comparing rescue versus conventional treatment. CONCLUSIONS: Despite high hospital mortality, severe acute respiratory distress syndrome patients surviving to hospital discharge have relatively good long-term survival. Worsening hypoxemia was associated with initiation of rescue therapy. Patients on rescue therapy had higher in-hospital mortality; however, survivors to hospital discharge had long-term survival that was comparable to other acute respiratory distress syndrome survivors.

Surviving critical illness: acute respiratory distress syndrome as experienced by patients and their caregivers.

OBJECTIVE: To characterize the effects of critical illness in the daily lives and functioning of acute respiratory distress syndrome survivors. Survivors of acute respiratory distress syndrome, a systemic critical illness, often report poor quality of life based on responses to standardized questionnaires. However, the experiences of acute respiratory distress syndrome survivors have not been reported. DESIGN: We conducted semistructured interviews with 23 acute respiratory distress syndrome survivors and 24 caregivers 3 to 9 mos after intensive care unit admission, stopping enrollment after thematic saturation was reached. Transcripts were analyzed, using Colaizzi's qualitative methodology, to identify significant ways in which survivors' critical illness experience impacted their lives. SETTING: Medical and surgical intensive care units of an academic medical center and a community hospital. PATIENTS: We recruited consecutively 31 acute respiratory distress syndrome survivors and their informal caregivers. Eight patients died before completing interviews. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Participants related five key elements of experience as survivors of acute respiratory distress syndrome: 1) pervasive memories of critical care; 2) day-to-day impact of new disability; 3) critical illness defining the sense of self; 4) relationship strain and change; and 5) ability to cope with disability. Survivors described remarkable disability that persisted for months. Caregivers' interviews revealed substantial strain from caregiving responsibilities as well as frequent symptom minimization by patients. CONCLUSIONS: The diverse and unique experiences of acute respiratory distress syndrome survivors reflect the global impact of severe critical illness. We have identified symptom domains important to acute respiratory distress syndrome patients who are not well represented in existing health outcomes measures. These insights may aid the development of targeted interventions to enhance recovery and return of function after acute respiratory distress syndrome.