Race, Ethnicity, and Intensive Care Utilization for Common Pediatric Diagnoses: U.S. Pediatric Health Information System 2019 Database Study.

OBJECTIVES: Racial and ethnic disparities in healthcare delivery for acutely ill children are pervasive in the United States; it is unknown whether differential critical care utilization exists. DESIGN: Retrospective study of the Pediatric Health Information System (PHIS) database. SETTING: Multicenter database of academic children's hospitals in the United States. PATIENTS: Children discharged from a PHIS hospital in 2019 with one of the top ten medical conditions where PICU utilization was present in greater than or equal to 5% of hospitalizations. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Race and ethnicity categories included Asian, Black, Hispanic, White, and other. Primary outcomes of interest were differences in rate of PICU admission, and for children requiring PICU care, total hospital length of stay (LOS). One-quarter (n = 44,200) of the 178,134 hospital discharges included a PICU admission. In adjusted models, Black children had greater adjusted odds ratio (aOR [95% CI]) of PICU admission in bronchiolitis (aOR, 1.08 [95% CI, 1.02-1.14]; p = 0.01), respiratory failure (aOR, 1.18 [95% CI, 1.10-1.28]; p < 0.001), seizure (aOR, 1.28 [95% CI, 1.08-1.51]; p = 0.004), and diabetic ketoacidosis (DKA) (aOR, 1.18 [95% CI, 1.05-1.32]; p = 0.006). Together, Hispanic, Asian, and other race children had greater aOR of PICU admission in five of the diagnostic categories, compared with White children. The geometric mean (± sd) hospital LOS ranged from 47.7 hours (± 2.1 hr) in croup to 206.6 hours (± 2.8 hr) in sepsis. After adjusting for demographics and illness severity, non-White children had longer LOS in respiratory failure, pneumonia, DKA, and sepsis. CONCLUSIONS: The need for critical care to treat acute illness in children may be inequitable. Additional studies are needed to understand and eradicate differences in PICU utilization based on race and ethnicity.

Understanding Disparities in Receipt of Complex Gastrointestinal Cancer Surgery at a Small Geographic Scale.

OBJECTIVE: To define neighborhood-level disparities in the receipt of complex cancer surgery. BACKGROUND: Little is known about the geographic variation of receipt of surgery among patients with complex gastrointestinal (GI) cancers, especially at a small geographic scale. METHODS: This study included individuals diagnosed with 5 invasive, nonmetastatic, complex GI cancers (esophagus, stomach, pancreas, bile ducts, liver) from the Ohio Cancer Incidence Surveillance System during 2009 and 2018. To preserve patient privacy, we combined US census tracts into the smallest geographic areas that included a minimum number of surgery cases (n=11) using the Max-p-regions method and called these new areas "MaxTracts." Age-adjusted surgery rates were calculated for MaxTracts, and the Hot Spot analysis identified clusters of high and low surgery rates. US Census and CDC PLACES were used to compare neighborhood characteristics between the high- and low-surgery clusters. RESULTS: This study included 33,091 individuals with complex GI cancers located in 1006 MaxTracts throughout Ohio. The proportion in each MaxTract receiving surgery ranged from 20.7% to 92.3% with a median (interquartile range) of 48.9% (42.4-56.3). Low-surgery clusters were mostly in urban cores and the Appalachian region, whereas high-surgery clusters were mostly in suburbs. Low-surgery clusters differed from high-surgery clusters in several ways, including higher rates of poverty (23% vs. 12%), fewer married households (40% vs. 50%), and more tobacco use (25% vs. 19%; all P <0.01). CONCLUSIONS: This improved understanding of neighborhood-level variation in receipt of potentially curative surgery will guide future outreach and community-based interventions to reduce treatment disparities. Similar methods can be used to target other treatment phases and other cancers.

Effects of the care given to intensive care patients using an evidence model on the prevention of central line-associated bloodstream infections.

It is important to put evidence-based guidelines into practice in the prevention of central line-associated bloodstream infections in intensive care patients. In contrast to expensive and complex interventions, a care bundle that includes easy-to-implement and low-cost interventions improves clinical outcomes. The compliance of intensive care nurses with guidelines is of great importance in achieving these results. The Translating Evidence into Practice Model provides guidance in how to implement the necessary guidelines. This quasi-experimental study used a post-test control group design in nonequivalent groups and was conducted in the anesthesia intensive care unit of a tertiary-level training and research hospital. All patients who were hospitalized in the intensive care unit, who had a central line during the study, and who met the inclusion criteria were included in the sample. The care bundle comprised education, and protocols for hand hygiene and the aseptic technique, maximum sterile barrier precautions, central line insertion trolley, and management of nursing care. To analyze the data, the independent samples t-test, the Mann-Whitney U test, chi-square test, dependent samples t-test, rate ratio, and relative risk were used with 95% confidence intervals. The rate of central line-associated bloodstream infections was significantly lower in the intervention group (2.85/1000 central line days) than in the control group (3.35/1000 central line days) (P = 0.042). The number of accesses to the central line by the nurses decreased significantly in the intervention group compared to the control group (P < 0.001). The mean score for the nurses' evidence-based guideline post-education knowledge (70.80 ± 12.26) was significantly higher than that pre-education (48.20 ± 14.66) (P < 0.001). Compliance with the guideline recommendations in central line-related nursing interventions and in the central line insertion process was significantly better in the intervention group than in the control group in many interventions (P < 0.05). The mean score for the nurses' attitude towards evidence-based nursing increased significantly over time (59.87 ± 7.23 at the 0th month; 63.79 ± 7.24 at the 6th month) (P < 0.001). Nursing care given by implementing the central line care bundle with the Translating Evidence into Practice Model affected the measures. Thanks to the implementation of the care bundle, the rate of infections and the number of accesses to the central line decreased, while the critical care nurses' knowledge of evidence-based guidelines, compliance with the guideline recommendations in central line-related nursing interventions, and attitudes towards evidence-based nursing improved.

Achieving Large-Scale Quality Improvement in Primary Care Annual Wellness Visits and Hierarchical Condition Coding.

BACKGROUND: Completion of Medicare Annual Wellness Visits (AWV) and documentation of Hierarchical Condition Categories (HCC) are important metrics in accountable care organizations (ACO) with quality and financial implications. To improve performance in large healthcare organizations, quality improvement (QI) efforts need to be scaled up in a way that is feasible within available system-wide resources. OBJECTIVE: We describe a 3-year effort using a multifaceted QI framework called the fractal management system for AWV and HCC performance. DESIGN: Pre-post evaluation of a multi-level, health system-wide QI management system intervention between 2018 and 2020. The system provided project management, coaching, communications, feedback of performance, and health informatics. PARTICIPANTS: The intervention was delivered to all 97 primary care practices within an Ohio-based accountable care organization, comprising 72,603 attributed Medicare and Medicare Advantage patients as of 2018. Eighty-nine of these practices were included in the analysis. APPROACH: AWV completion was defined as percent of eligible patients with a documented AWV during the calendar year. HCC completion was defined as documented reassessment of all prior-year HCC conditions. KEY RESULTS: AWV completion at the practice level increased from 23.7% (SD .14) in 2018 to 34.9% (SD .18) in 2019, and 59.8% (SD .17) in 2020. This was a statistically significant effect of time on AWV completion rates overall (F[2, 87] = 164.43, p < .000). More than half (56.2%) of practices met or exceeded the 60% goal in 2020. Practice-level HCC completion tracking started in 2019 (M = 75.9%, SD 7.4%) and increased in 2020 (M = 79.7%, SD 7.1%); t(172) = 2.0, p < .001. CONCLUSIONS: AWV and HCC performance goals were met in 2020, despite service disruptions due to COVID-19. The QI approach we used is applicable to other problems and other large healthcare systems.

A Cost-Utility Analysis of Remote Pulse-Oximetry Monitoring of Patients With COVID-19.

OBJECTIVES: Since 2020, COVID-19 has infected tens of millions and caused hundreds of thousands of fatalities in the United States. Infection waves lead to increased emergency department utilization and critical care admission for patients with respiratory distress. Although many individuals develop symptoms necessitating a ventilator, some patients with COVID-19 can remain at home to mitigate hospital overcrowding. Remote pulse-oximetry (pulse-ox) monitoring of moderately ill patients with COVID-19 can be used to monitor symptom escalation and trigger hospital visits, as needed. METHODS: We analyzed the cost-utility of remote pulse-ox monitoring using a Markov model with a 3-week time horizon and daily cycles from a US health sector perspective. Costs (US dollar 2020) and outcomes were derived from the University Hospitals' real-world evidence and published literature. Costs and quality-adjusted life-years (QALYs) were used to determine the incremental cost-effectiveness ratio at a cost-effectiveness threshold of $100 000 per QALY. We assessed model uncertainty using univariate and probabilistic sensitivity analyses. RESULTS: Model results demonstrated that remote monitoring dominates current standard care, by reducing costs ($11 472 saved) and improving outcomes (0.013 QALYs gained). There were 87% fewer hospitalizations and 77% fewer deaths among patients with access to remote pulse-ox monitoring. The incremental cost-effectiveness ratio was not sensitive to uncertainty ranges in the model. CONCLUSIONS: Patient with COVID-19 remote pulse-ox monitoring increases the specificity of those requiring follow-up care for escalating symptoms. We recommend remote monitoring adoption across health systems to economically manage COVID-19 volume surges, maintain patients' comfort, reduce community infection spread, and carefully monitor needs of multiple individuals from one location by trained experts.

A modified Delphi study to identify the features of high quality measurement plans for healthcare improvement projects.

BACKGROUND: The design and execution of measurement in quality improvement (QI) initiatives is often poor. Better guidance on "what good looks like" might help to mitigate some of the problems. We report a consensus-building process that sought to identify which features are important to include in QI measurement plans. METHODS: We conducted a three-stage consensus-building approach: (1) identifying the list of features of measurement plans that were potential candidates for inclusion based on literature review and the study team's experience; (2) a two-round modified Delphi exercise with a panel of experts to establish consensus on the importance of these features; and (3) a small in-person consensus group meeting to finalise the list of features. RESULTS: A list of 104 candidate questions was generated. A panel of 19 experts in the Delphi reviewed these questions and produced consensus on retaining 46 questions in the first round and on a further 22 in the second round. Thematic analysis of open text responses from the panellists suggested a number of areas of debate that were explicitly considered by the consensus group. The exercise yielded 74 questions (71% of 104) on which there was consensus in five categories of measurement relating to: design, data collection and management, analysis, action, and embedding. CONCLUSIONS: This study offers a consensus-based view on the features of a good measurement plan for a QI project in healthcare. The results may be of use to QI teams, funders and evaluators, but are likely to require further development and testing to ensure feasibility and usefulness.

Venous Thromboembolism Quality Measures Fail to Accurately Measure Quality.

Venous thromboembolism (VTE) is 1 of the most common causes of preventable harm for patients in hospitals. Consequently, the Joint Commission, the Centers for Medicare and Medicaid Services, the Agency for Healthcare Research and Quality, the United Kingdom Care Quality Commission, the Australian Commission on Safety and Quality in Health Care, the Maryland Health Services Cost Review Commission, and the American College of Surgeons have prioritized measuring and reporting VTE outcomes with the goal of reducing the incidence of and preventable harm from VTE. We developed a rubric for defect-free VTE prevention, graded each organizational VTE quality measure, and found that none of the current VTE-related quality measures adequately characterizes VTE prevention efforts or outcomes in hospitalized patients. Effective VTE prevention is multifactorial: clinicians must assess patients' risk for VTE and prescribe therapy appropriate for each patient's risk profile, patients must accept the prescribed therapy, and nurses must administer the therapy as prescribed. First, an ideal, defect-free VTE prevention process measure requires: (1) documentation of a standardized VTE risk assessment; (2) prescription of optimal, risk-appropriate VTE prophylaxis; and (3) administration of all risk-appropriate VTE prophylaxis as prescribed. Second, an ideal VTE outcome measure should define potentially preventable VTE as VTE that developed in patients who experienced any VTE prevention process failures.

Opioid Oversupply After Joint and Spine Surgery: A Prospective Cohort Study.

BACKGROUND: Many patients receive prescription opioids at hospital discharge after surgery, yet little is known regarding how often these opioids go unused. We estimated the prevalence of unused opioids, use of nonopioid analgesics, and storage and disposal practices after same-day and inpatient surgery. METHODS: In this prospective cohort study at a large, inner-city tertiary care hospital, we recruited individuals ≥18 years of age undergoing elective same-day or inpatient joint and spine surgery from August to November 2016. Using patient surveys via telephone calls, we assessed patient-reported outcomes at 2-day, 2-week, 1-month, and 6-month intervals, including: (1) stopping opioid treatment and in possession of unused opioid pills (primary outcome), (2) number of unused opioid tablets reported after stopping opioids, (3) use of nonopioid pain treatments, and (4) knowledge and practice regarding safe opioid storage and disposal. RESULTS: Of 141 eligible patients, 140 (99%) consented (35% taking preoperative opioids; mean age 56 years [standard deviation 16 years]; 47% women). One- and 6-month follow-up was achieved for 115 (82%) and 110 patients (80%), respectively. Among patients who stopped opioid therapy, possession of unused opioids was reported by 73% (95% confidence intervals, 62%-82%) at 1-month follow-up and 34% (confidence interval, 24%-45%) at 6-month follow-up. At 1 month, 46% had ≥20 unused pills, 37% had ≥200 morphine milligram equivalents, and only 6% reported using multiple nonopioid adjuncts. Many patients reported unsafe storage and failure to dispose of opioids at both 1-month (91% and 96%, respectively) and 6-month (92% and 47%, respectively) follow-up. CONCLUSIONS: After joint and spine surgery, many patients reported unused opioids, infrequent use of analgesic alternatives, and lack of knowledge regarding safe opioid storage and disposal. Interventions are needed to better tailor postoperative analgesia and improve the safe storage and disposal of prescription opioids.

Effect of a Hospital-Initiated Program Combining Transitional Care and Long-term Self-management Support on Outcomes of Patients Hospitalized With Chronic Obstructive Pulmonary Disease: A Randomized Clinical Trial.

Importance: Patients hospitalized for chronic obstructive pulmonary disease (COPD) exacerbations have high rehospitalization rates and reduced quality of life. Objective: To evaluate whether a hospital-initiated program that combined transition and long-term self-management support for patients hospitalized due to COPD and their family caregivers can improve outcomes. Design, Setting, and Participants: Single-site randomized clinical trial conducted in Baltimore, Maryland, with 240 participants. Participants were patients hospitalized due to COPD, randomized to intervention or usual care, and followed up for 6 months after hospital discharge. Enrollment occurred from March 2015 to May 2016; follow-up ended in December 2016. Interventions: The intervention (n = 120) involved a comprehensive 3-month program to help patients and their family caregivers with long-term self-management of COPD. It was delivered by nurses with special training on supporting patients with COPD using standardized tools. Usual care (n = 120) included transition support for 30 days after discharge to ensure adherence to discharge plan and connection to outpatient care. Main Outcomes and Measures: The primary outcome was number of COPD-related acute care events (hospitalizations and emergency department visits) per participant at 6 months. The co-primary outcome was change in participants' health-related quality of life measured by the St George's Respiratory Questionnaire (SGRQ) at 6 months after discharge (score, 0 [best] to 100 [worst]; 4-point difference is clinically meaningful). Results: Among 240 patients who were randomized (mean [SD] age, 64.9 [9.8] years; 61.7% women), 203 (85%) completed the study. The mean (SD) baseline SGRQ score was 62.3 (18.8) in the intervention group and 63.6 (17.4) in the usual care group. The mean number of COPD-related acute care events per participant at 6 months was 1.40 (95% CI, 1.01-1.79) in the intervention group vs 0.72 (95% CI, 0.45-0.97) in the usual care group (difference, 0.68 [95% CI, 0.22-1.15]; P = .004). The mean change in participants' SGRQ total score at 6 months was 2.81 in the intervention group and -2.69 in the usual care group (adjusted difference, 5.18 [95% CI, -2.15 to 12.51]; P = .11). During the study period, there were 15 deaths (intervention: 8; usual care: 7) and 339 hospitalizations (intervention: 202; usual care: 137). Conclusions and Relevance: In a single-site randomized clinical trial of patients hospitalized due to COPD, a 3-month program that combined transition and long-term self-management support resulted in significantly greater COPD-related hospitalizations and emergency department visits, without improvement in quality of life. Further research is needed to determine reasons for this unanticipated finding. Trial Registration: ClinicalTrials.gov Identifier: NCT02036294.

Towards improving hospital workflows: An evaluation of resources to mobilize patients.

AIM: To characterize resources to safely mobilize different types of hospitalized patients. BACKGROUND: Current approaches to determine nurse-patient ratios do not always include information regarding the specific demands of patients who require extra resources to mobilize. Workflows must be designed with knowledge of resource requirements to integrate patient mobility into the daily nursing team care plan. METHODS: Nurse-led mobility sessions were evaluated on two adult hospital units, which consisted of nurse-patient encounters focused on patient mobility only. The resources assessed for each session were time-to-mobilize patient, time-to-document, need for additional staff support, and the need for assistive devices. Mobility sessions were also categorized by patient ambulation status, level of mobility limitations (low, medium and high) and diagnosis. RESULTS: In 212 total mobility sessions, the median time-to-mobilize and time-to-document were 7.75 and 1.27 min, respectively. Additional staff support was required for 87% and 92% of patients with medium and high mobility limitations, respectively. All patients with low mobility limitations ambulated, and only 14% required additional staff. Ambulating patients with high mobility limitations was the most time-intensive (median 12.55 min). Ambulating stroke patients required one additional staff and an assistive device in 92% and 69% of the sessions, respectively. CONCLUSION: This study describes the resources associated with mobilizing inpatients with different levels of mobility impairments and diagnoses. IMPLICATIONS FOR NURSING MANAGEMENT: These results could assist nursing management with facilitating appropriate daily nurse-patient ratios and justify the need for assistive devices and staff support to safely mobilize patients.

Return to work and lost earnings after acute respiratory distress syndrome: a 5-year prospective, longitudinal study of long-term survivors.

BACKGROUND: Delayed return to work is common after acute respiratory distress syndrome (ARDS), but has undergone little detailed evaluation. We examined factors associated with the timing of return to work after ARDS, along with lost earnings and shifts in healthcare coverage. METHODS: Five-year, multisite prospective, longitudinal cohort study of 138 2-year ARDS survivors hospitalised between 2004 and 2007. Employment and healthcare coverage were collected via structured interview. Predictors of time to return to work were evaluated using Fine and Grey regression analysis. Lost earnings were estimated using Bureau of Labor Statistics data. RESULTS: Sixty-seven (49%) of the 138 2-year survivors were employed prior to ARDS. Among 64 5-year survivors, 20 (31%) never returned to work across 5-year follow-up. Predictors of delayed return to work (HR (95% CI)) included baseline Charlson Comorbidity Index (0.77 (0.59 to 0.99) per point; p=0.04), mechanical ventilation duration (0.67 (0.55 to 0.82) per day up to 5 days; p<0.001) and discharge to a healthcare facility (0.49 (0.26 to 0.93); p=0.03). Forty-nine of 64 (77%) 5-year survivors incurred lost earnings, with average (SD) losses ranging from US$38 354 (21,533) to US$43 510 (25,753) per person per year. Jobless, non-retired survivors experienced a 33% decrease in private health insurance and concomitant 37% rise in government-funded coverage. CONCLUSIONS: Across 5-year follow-up, nearly one-third of previously employed ARDS survivors never returned to work. Delayed return to work was associated with patient-related and intensive care unit/hospital-related factors, substantial lost earnings and a marked rise in government-funded healthcare coverage. These important consequences emphasise the need to design and evaluate vocation-based interventions to assist ARDS survivors return to work.

Evaluation of a Measurement System to Assess ICU Team Performance.

OBJECTIVE: Measuring teamwork is essential in critical care, but limited observational measurement systems exist for this environment. The objective of this study was to evaluate the reliability and validity of a behavioral marker system for measuring teamwork in ICUs. DESIGN: Instances of teamwork were observed by two raters for three tasks: multidisciplinary rounds, nurse-to-nurse handoffs, and retrospective videos of medical students and instructors performing simulated codes. Intraclass correlation coefficients were calculated to assess interrater reliability. Generalizability theory was applied to estimate systematic sources of variance for the three observed team tasks that were associated with instances of teamwork, rater effects, competency effects, and task effects. SETTING: A 15-bed surgical ICU at a large academic hospital. SUBJECTS: One hundred thirty-eight instances of teamwork were observed. Specifically, we observed 88 multidisciplinary rounds, 25 nurse-to-nurse handoffs, and 25 simulated code exercises. INTERVENTIONS: No intervention was conducted for this study. MEASUREMENTS AND MAIN RESULTS: Rater reliability for each overall task ranged from good to excellent correlation (intraclass correlation coefficient, 0.64-0.81), although there were seven cases where reliability was fair and one case where it was poor for specific competencies. Findings from generalizability studies provided evidence that the marker system dependably distinguished among teamwork competencies, providing evidence of construct validity. CONCLUSIONS: Teamwork in critical care is complex, thereby complicating the judgment of behaviors. The marker system exhibited great potential for differentiating competencies, but findings also revealed that more context specific guidance may be needed to improve rater reliability.

Misdiagnosis in the Emergency Department: Time for a System Solution.

This Viewpoint offers 3 insights in response to the AHRQ report on diagnostic errors made in US emergency departments: focus on the delivery systems instead of individuals, establish ways to set definitions and assess error rates, and design safe delivery systems to prevent errors.

Effect of a Program Combining Transitional Care and Long-term Self-management Support on Outcomes of Hospitalized Patients With Chronic Obstructive Pulmonary Disease: A Randomized Clinical Trial.

Importance: Patients hospitalized for chronic obstructive pulmonary disease (COPD) exacerbations have high rehospitalization rates and reduced quality of life. Objective: To evaluate a hospital-initiated program that combined transition and long-term self-management support for patients hospitalized due to COPD and their family caregivers. Design, Setting, and Participants: This single-site randomized clinical trial was conducted in Baltimore, Maryland, with 240 participants. Participants were patients hospitalized due to COPD, randomized to intervention or usual care, and followed up for 6 months after hospital discharge. Enrollment occurred from March 2015 to May 2016; follow-up ended in December 2016. Interventions: The intervention (n = 120) was a comprehensive 3-month program to help patients and their family caregivers with long-term self-management of COPD. It was delivered by COPD nurses (nurses with special training on supporting patients with COPD using standardized tools). Usual care (n = 120) included transition support for 30 days after discharge to ensure adherence to discharge plan and connection to outpatient care. Main Outcomes and Measures: The primary outcome was number of COPD-related acute care events (hospitalizations and emergency department visits) per participant at 6 months. The co-primary outcome was change in participants' health-related quality of life measured by the St George's Respiratory Questionnaire (SGRQ) at 6 months after discharge (score, 0 [best] to 100 [worst]; 4-point difference is clinically meaningful). Results: Among 240 patients who were randomized (mean [SD] age, 64.9 [9.8] years; females, 61.7%), 203 (85%) completed the study. The mean (SD) baseline SGRQ score was 63.1 (19.9) in the intervention group and 62.6 (19.3) in the usual care group. The mean number of COPD-related acute care events per participant at 6 months was 0.72 (95% CI, 0.45-0.97) in the intervention group vs 1.40 (95% CI, 1.01-1.79) in the usual care group (difference, 0.68 [95% CI, 0.22 to 1.15]; P = .004). The mean change in participants' SGRQ total score at 6 months was -1.53 in the intervention and +5.44 in the usual care group (adjusted difference, -6.69 [95% CI, -12.97 to -0.40]; P = .04). During the study period, there were 15 deaths (intervention: 7; usual care: 8) and 337 hospitalizations (intervention: 135; usual care: 202). Conclusions and Relevance: In a single-site randomized clinical trial of patients hospitalized due to COPD, a 3-month program that combined transition and long-term self-management support resulted in significantly fewer COPD-related hospitalizations and emergency department visits and better health-related quality of life at 6 months after discharge. Further research is needed to evaluate this intervention in other settings. Trial Registration: ClinicalTrials.gov Identifier: NCT02036294.

Muscle Weakness and 5-Year Survival in Acute Respiratory Distress Syndrome Survivors.

OBJECTIVES: To longitudinally evaluate the association of post-ICU muscle weakness and associated trajectories of weakness over time with 5-year survival. DESIGN: Longitudinal prospective cohort study over 5 years of follow-up. SETTING: Thirteen ICUs in four hospitals in Baltimore, MD. PATIENTS: One hundred fifty-six acute respiratory distress syndrome survivors. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Strength was evaluated with standardized manual muscle testing using the Medical Research Council sum score (range, 0-60; higher is better), with post-ICU weakness defined as sum score less than 48. Muscle strength was assessed at hospital discharge and at 3, 6, 12, 24, 36, and 48 months after acute respiratory distress syndrome. At discharge, 38% of patients had muscle weakness. Every one point increase in sum score at discharge was associated with improved survival (hazard ratio [95% CI], 0.96 [0.94-0.98]), with similar findings longitudinally (0.95 [0.93-0.98]). Having weakness at discharge was associated with worse 5-year survival (1.75 [1.01-3.03]), but the association was attenuated (1.54 [0.82-2.89]) when evaluated longitudinally over follow-up. Persisting and resolving trajectories of muscle weakness, occurring in 50% of patients during follow-up, were associated with worse survival (3.01 [1.12-8.04]; and 3.14 [1.40-7.03], respectively) compared to a trajectory of maintaining no muscle weakness. CONCLUSIONS: At hospital discharge, greater than one third of acute respiratory distress syndrome survivors had muscle weakness. Greater strength at discharge and throughout follow-up was associated with improved 5-year survival. In patients with post-ICU weakness, both persisting and resolving trajectories were commonly experienced and associated with worse survival during follow-up.