Palliative clinical trials in advanced chronic liver disease: Challenges and opportunities.

Patients with advanced chronic liver disease have a complex symptom burden and many are not candidates for curative therapy. Despite this, provision of palliative interventions remains woefully inadequate, with an insufficient evidence base being a contributory factor. Designing and conducting palliative interventional trials in advanced chronic liver disease remains challenging for a multitude of reasons. In this manuscript we review past and ongoing palliative interventional trials. We identify barriers and facilitators and offer guidance on addressing these challenges. We hope that this will reduce the inequity in palliative care provision in advanced chronic liver disease.

Effects of Specialist Palliative Care for Patients Undergoing Major Abdominal Surgery for Cancer: A Randomized Clinical Trial.

Importance: Specialist palliative care benefits patients undergoing medical treatment of cancer; however, data are lacking on whether patients undergoing surgery for cancer similarly benefit from specialist palliative care. Objective: To determine the effect of a specialist palliative care intervention on patients undergoing surgery for cure or durable control of cancer. Design, Setting, and Participants: This was a single-center randomized clinical trial conducted from March 1, 2018, to October 28, 2021. Patients scheduled for specified intra-abdominal cancer operations were recruited from an academic urban referral center in the Southeastern US. Intervention: Preoperative consultation with palliative care specialists and postoperative inpatient and outpatient palliative care follow-up for 90 days. Main Outcomes and Measures: The prespecified primary end point was physical and functional quality of life (QoL) at postoperative day (POD) 90, measured by the Functional Assessment of Cancer Therapy-General (FACT-G) Trial Outcome Index (TOI), which is scored on a range of 0 to 56 with higher scores representing higher physical and functional QoL. Prespecified secondary end points included overall QoL at POD 90 measured by FACT-G, days alive at home until POD 90, and 1-year overall survival. Multivariable proportional odds logistic regression and Cox proportional hazards regression models were used to test the hypothesis that the intervention improved each of these end points relative to usual care in an intention-to-treat analysis. Results: A total of 235 eligible patients (median [IQR] age, 65.0 [56.8-71.1] years; 141 male [60.0%]) were randomly assigned to the intervention or usual care group in a 1:1 ratio. Specialist palliative care was received by 114 patients (97%) in the intervention group and 1 patient (1%) in the usual care group. Adjusted median scores on the FACT-G TOI measure of physical and functional QoL did not differ between groups (intervention score, 46.77; 95% CI, 44.18-49.04; usual care score, 46.23; 95% CI, 43.08-48.14; P = .46). Intervention vs usual care group odds ratio (OR) was 1.17 (95% CI, 0.77-1.80). Palliative care did not improve overall QoL measured by the FACT-G score (intervention vs usual care OR, 1.09; 95% CI, 0.75-1.58), days alive at home (OR, 0.87; 95% CI, 0.69-1.11), or 1-year overall survival (hazard ratio, 0.97; 95% CI, 0.50-1.88). Conclusions and Relevance: This randomized clinical trial showed no evidence that early specialist palliative care improves the QoL of patients undergoing nonpalliative cancer operations. Trial Registration: ClinicalTrials.gov Identifier: NCT03436290.

Interpreting the risk analysis index of frailty in the context of surgical oncology.

BACKGROUND AND OBJECTIVES: The Risk Analysis Index (RAI) accurately predicts adverse postoperative outcomes but the inclusion of cancer status in the RAI has raised two key concerns about its suitability for use in surgical oncology: (1) the potential over classification of cancer patients as frail, and (2) the potential overestimation of postoperative mortality for patients with surgically curable cancers. METHODS: We performed a retrospective cohort analysis to assess the RAI's power to appropriately identify frailty and predict postoperative mortality in cancer patients. We assessed discrimination for mortality and calibration across five RAI models-the complete RAI and four variants that removed different cancer-related variables. RESULTS: We found that the presence of disseminated cancer was a key variable driving the RAI's power to predict postoperative mortality. The model including only this variable [RAI (disseminated cancer)] was similar to the complete RAI in the overall sample (c = 0.842 vs. 0.840) and outperformed the complete RAI in the cancer subgroup (c = 0.736 vs 0.704, respectively, p < 0.0001, Max R2 = 19.3% vs. 15.1%, respectively). CONCLUSION: The RAI demonstrates somewhat less discrimination when applied exclusively to cancer patients, but remains a strong predictor of postoperative mortality, especially in the setting of disseminated cancer.

Spirituality in Surgery-A Double-Edged Scalpel.

Investigating, respecting, and working with surgical patients' spiritualities is as critical a skill as the proficient technical performance of operations. When spirituality is ignored, sacred patient values remain undiscovered, authentic trust is hindered, and healthy shared decision-making processes suffer. These are instances when the other edge of the spiritual scalpel comes back to cut us as surgeons, but more importantly, upon withdrawal of spiritual understanding, it deeply injures our patients and their families. Spiritual screening, spiritual history taking, engaged, active listening, and big-picture prognostic truth-telling while promoting hope are critical skills for efficacious whole-person surgical care and the healing of our surgical patients' suffering-in all aspects of their humanity. These skills require surgeon introspection and vulnerability, however, as well as regular practice, and can be quite difficult; frequently leading to understandable discomfort, particularly when the surgeon does not share the patient's spiritual orientation or religious commitments. This literature-based essay addresses all of these issues, providing surgeons with a variety of new spiritual tools for their holistic armamentarium to promote healing, rather than further injury.

Association of Frailty and the Expanded Operative Stress Score with Preoperative Acute Serious Conditions, Complications, and Mortality in Males Compared to Females: A Retrospective Observational Study.

OBJECTIVE: The aim of this study was to expand Operative Stress Score (OSS) increasing procedural coverage and assessing OSS and frailty association with Preoperative Acute Serious Conditions (PASC), complications and mortality in females versus males. SUMMARY BACKGROUND DATA: Veterans Affairs male-dominated study showed high mortality in frail veterans even after very low stress surgeries (OSS1). METHODS: Retrospective cohort using NSQIP data (2013-2019) merged with 180-day postoperative mortality from multiple hospitals to evaluate PASC, 30-day complications and 30-, 90-, and 180-day mortality. RESULTS: OSS expansion resulted in 98.2% case coverage versus 87.0% using the original. Of 82,269 patients (43.8% male), 7.9% were frail/very frail. Males had higher odds of PASC [adjusted odds ratio (aOR) = 1.31, 95% confidence interval (CI) = 1.21-1.41, P < 0.001] and severe/life-threatening Clavien-Dindo IV (CDIV) complications (aOR = 1.18, 95% CI = 1.09-1.28, P < 0.001). Although mortality rates were higher (all time-points, P < 0.001) in males versus females, mortality was similar after adjusting for frailty, OSS, and case status primarily due to increased male frailty scores. Additional adjustments for PASC and CDIV resulted in a lower odds of mortality in males (30-day, aOR = 0.81, 95% CI = 0.71-0.92, P = 0.002) that was most pronounced for males with PASC compared to females with PASC (30-day, aOR = 0.75, 95% CI = 0.56-0.99, P = 0.04). CONCLUSIONS: Similar to the male-dominated Veteran population, private sector, frail patients have high likelihood of postoperative mortality, even after low-stress surgeries. Preoperative frailty screening should be performed regardless of magnitude of the procedure. Despite males experiencing higher adjusted odds of PASC and CDIV complications, females with PASC had higher odds of mortality compared to males, suggesting differences in the aggressiveness of care provided to men and women.

Sex-Related Differences in Acuity and Postoperative Complications, Mortality and Failure to Rescue.

INTRODUCTION: Yentl syndrome describing sex-related disparities has been extensively studied in medical conditions but not after surgery. This retrospective cohort study assessed the association of sex, frailty, presenting with preoperative acute serious conditions (PASC), and the expanded Operative Stress Score (OSS) with postoperative complications, mortality, and failure-to-rescue. METHODS: The National Surgical Quality Improvement Program from 2015 to 2019 evaluating 30-d complications, mortality, and failure-to-rescue. RESULTS: Of 4,860,308 cases (43% were male; mean [standard deviation] age of 56 [17] y), 6.0 and 0.8% were frail and very frail, respectively. Frailty score distribution was higher in men versus women (P < 0.001). Most cases were low-stress OSS2 (44.9%) or moderate-stress OSS3 (44.5%) surgeries. While unadjusted 30-d mortality rates were higher (P < 0.001) in males (1.1%) versus females (0.8%), males had lower odds of mortality (adjusted odds ratio (aOR) = 0.92, 95% confidence interval [CI] = 0.90-0.94, P < 0.001) after adjusting for frailty, OSS, case status, PASC, and Clavien-Dindo IV (CDIV) complications. Males have higher odds of PASC (aOR = 1.33, CI = 1.31-1.35, P < 0.001) and CDIV complications (aOR = 1.13, CI = 1.12-1.15, P < 0.001). Male-PASC (aOR = 0.76, CI = 0.72-0.80, P < 0.001) and male-CDIV (aOR = 0.87, CI = 0.83-0.91, P < 0.001) interaction terms demonstrated that the increased odds of mortality associated with PASC or CDIV complications/failure-to-rescue were lower in males versus females. CONCLUSIONS: Our study provides a comprehensive analysis of sex-related surgical outcomes across a wide range of procedures and health care systems. Females presenting with PASC or experiencing CDIV complications had higher odds of mortality/failure to rescue suggesting sex-related care differences. Yentl syndrome may be present in surgical patients; possibly related to differences in presenting symptoms, patient care preferences, or less aggressive care in female patients and deserves further study.

Patient Perspectives on Perioperative Supportive Care Needs Surrounding Major Abdominal Operations for Cancer.

PURPOSE: The development of supportive care interventions delivered by surgeons for their patients is a major research priority. Designing such interventions requires understanding patients' supportive care needs for major operations. This qualitative analysis aimed to determine the supportive care needs of patients undergoing major abdominal operations for cancer. METHODS: We conducted semi-structured interviews with a subset of participants in a randomized, controlled trial of a specialist palliative care intervention for patients undergoing abdominal resections for cancer (NCT03436290). Sampling was designed to balance the population by sex, age (older vs. younger than 65 years), and treatment group assignment (intervention vs. control). The interview guide was developed to elicit patient perceptions of their supportive care needs from diagnosis to the time of interview, about 1 month after their operation. Two coders used an iterative, inductive method to identify recurring themes in the interviews. RESULTS: Analysis of interview transcripts revealed five primary themes: preoperative preparation, postoperative recovery, expectation setting, coordination of care, and provider characteristics. Cutting across these themes were patients' focus on time, timeliness, and timelines, as well as their desires for information both from their surgeons and other sources. Surgeons inspired trust through the quality of their communication and their responsiveness to questions. Patients were sensitive to perceived deviations from their expectations and spoke of the need to develop patience and to expect the unexpected. CONCLUSIONS: Patients expressed several needs for supportive care that surgical teams can potentially address to improve the experience of major cancer surgery.

Top Ten Tips Palliative Care Clinicians Should Know About Solid Organ Transplantation.

Solid organ transplantation (SOT) is a life-saving procedure for people with end-stage organ failure. However, patients experience significant symptom burden, complex decision making, morbidity, and mortality during both pre- and post-transplant periods. Palliative care (PC) is well suited and historically underdelivered for the transplant population. This article, written by a team of transplant specialists (surgeons, cardiologists, nephrologists, hepatologists, and pulmonologists), PC clinicians, and an ethics specialist, shares 10 high-yield tips for PC clinicians to consider when caring for SOT patients.

Comparing Veterans Affairs and Private Sector Perioperative Outcomes After Noncardiac Surgery.

Importance: Recent legislation facilitates veterans' ability to receive non-Veterans Affairs (VA) surgical care. However, contemporary data comparing the quality and safety of VA and non-VA surgical care are lacking. Objective: To compare perioperative outcomes among veterans treated in VA hospitals with patients treated in private-sector hospitals. Design, Setting, and Participants: This cohort study took place across 8 noncardiac specialties in the Veterans Affairs Surgical Quality Improvement Program (VASQIP) and American College of Surgeons National Surgical Quality Improvement Program (NSQIP) from January 1, 2015, through December 31, 2018. Multivariable log-binomial modeling was used to evaluate the association between VA vs private sector care settings and 30-day mortality. Unmeasured confounding was quantified using the E-value. Patients 18 years and older undergoing a noncardiac procedures were included. Exposures: Surgical care in either a VA or private sector setting. Main Outcomes and Measures: Primary outcome was 30-day postoperative mortality. Secondary outcome was failure to rescue, defined as a postoperative death after a complication. Results: Of 3 910 752 operations (3 174 274 from NSQIP and 736 477 from VASQIP), 1 498 984 (92.1%) participants in NSQIP were male vs 678 382 (47.2%) in VASQIP (mean difference, -0.449 [95% CI, -0.450 to -0.448]; P < .001), and 441 894 (60.0%) participants in VASQIP were frail or very frail vs 676 525 (21.3%) in NSQIP (mean difference, -0.387 [95% CI, -0.388 to -0.386]; P < .001). Overall, rates of 30-day mortality, complications, and failure to rescue were 0.8%, 9.5%, and 4.7%, respectively, in NSQIP (n = 3 174 274 operations) and 1.1%, 17.1%, and 6.7%, respectively in VASQIP (736 477) (differences in proportions, -0.003 [95% CI, -0.003 to -0.002]; -0.076 [95% CI, -0.077 to -0.075]; 0.020 [95% CI, 0.018-0.021], respectively; P < .001). Compared with private sector care, VA surgical care was associated with a lower risk of perioperative death (adjusted relative risk, 0.59 [95% CI, 0.47-0.75]; P < .001). This finding was robust in multiple sensitivity analyses performed, including among patients who were frail and nonfrail, with or without complications, and undergoing low and high physiologic stress procedures. These findings were also consistent when year was included as a covariate and in nonparsimonious modeling for patient-level factors. Compared with private sector care, VA surgical care was also associated with a lower risk of failure to rescue (adjusted relative risk, 0.55 [95% CI, 0.44-0.68]). An unmeasured confounder (present disproportionately in NSQIP data) would require a relative risk of 2.78 [95% CI, 2.04-3.68] to obviate the main finding. Conclusions and Relevance: VA surgical care is associated with lower perioperative mortality and decreased failure to rescue despite veterans having higher-risk characteristics. Given the unique needs and composition of the veteran population, health policy decisions and budgetary appropriations should reflect these important differences.

Integrating Specialist Palliative Care in the Liver Transplantation Evaluation Process: A Qualitative Analysis of Hepatologist and Palliative Care Provider Views.

Patients undergoing evaluation for liver transplantation face heavy burdens of symptoms, health care use, and mortality. In other similarly ill populations, specialist palliative care has been shown to benefit patients, but specialist palliative care is infrequently used for liver transplantation patients. This project aims to describe the potential benefits of and barriers to specialist palliative care integration in the liver transplantation process. We performed qualitative analysis of transcripts from provider focus groups followed by a community engagement studio of patients and caregivers. Focus groups consisted of 14 palliative care specialists and 10 hepatologists from 11 institutions across the United States and Canada. The community engagement studio comprised patients and caregivers of patients either currently on the liver transplantation waiting list or recently after transplant. The focus groups identified 19 elements of specialist palliative care that could benefit this patient population, including exploring patients' illness understanding and expectations; assessing physical symptoms comprehensively; discussing patient values; and providing caregiver support, a safe space to discuss noncurative options, and anticipatory guidance about likely next steps. Identified barriers included role boundaries, differences in clinical cultures, limitations of time and staff, competing goals and priorities, misconceptions about palliative care, limited resources, changes in transplant status, and patient complexity. Community studio participants identified many of the same opportunities and barriers. This study found that hepatologists, palliative care specialists, patients, and caregivers identified areas of care for liver transplantation patients that specialist palliative care can improve and address.

"Aren't Surgery and Palliative Care Kind of Opposites?"

Surgery is often considered one of the most aggressive forms of medical care. Palliative care, on the other hand, usually focuses on eliminating aggressive forms of medical care in the name of patient comfort. This article explores the seeming incongruity between surgery and palliative care, conditions in which surgery and palliation coexist, and further integration of surgery and palliation.

The Correlation Between Case Total Work Relative Value Unit, Operative Stress, and Patient Frailty: Retrospective Cohort Study.

OBJECTIVE: Assess the relationships between case total work relative value units (wRVU), patient frailty, and the physiologic stress of surgical interventions. SUMMARY OF BACKGROUND DATA: Surgeon reimbursement is frequently apportioned by wRVU. These subjective, procedure-specific valuations generated by physician survey estimate the intensity and time for typical patient care services. We hypothesized wRVU would not adequately account for patient-specific factors, such as frailty, that modify the required physician work, regardless of procedural complexity. METHODS: Using National and Veterans Affairs Surgical Quality Improvement Programs (2015-2018), we evaluated the correlation between case total wRVU, patient frailty (risk analysis index) and physiologic surgical stress (operative stress score). RESULTS: Of 4,111,371 (86%) cases, the correlation between total wRVU and operative stress was moderate [ρs = 0.587 (95% confidence interval, 0.586-0.587)], but negligible with frailty ρ = 0.177 (95% confidence interval, 0.176-0.178)]. Very high operative stress procedures [n = 34,047 (1%)] generated a mean total wRVU of 55.1 (standard deviation, 12.9), comprising 7%, 2%, and 1% of thoracic, vascular, and general surgical cases, respectively. Very frail patients [n = 152,535 (4%)] accounted for 9% of thoracic, 9% of vascular, 4% of general, 5% of urologic, and 4% of neurologic surgical cases, generating 21.0 (standard deviation, 12.4) mean total wRVU. Some nonfrail patients undergoing low operative stress procedures [n = 60,128 (2%)] nonetheless generated the highest quintile wRVU; these comprised >15% of plastic, gynecologic, and urologic surgical cases. CONCLUSIONS: Surgeon reimbursement correlates with operative stress but not patient frailty. The total wRVU does not adequately reflect patient-specific factors that increase the physician workload required to render optimal care to complex patients.

Using the Unified Medical Language System to Expand the Operative Stress Score - First Use Case.

BACKGROUND: The Unified Medical Language System (UMLS) maps relationships between and within >100 biomedical vocabularies, including Current Procedural Terminology (CPT) codes, creating a powerful knowledge resource which can accelerate clinical research. METHODS: We used synonymy and concepts relating hierarchical structure of CPT codes within the UMLS, (1) guiding surgical experts in expanding the Operative Stress Score (OSS) from 565 originally rated CPT codes to additional, 1,853 related procedures; (2) establishing validity of the association between the added OSS ratings and 30-day outcomes in VASQIP (2015-2018). RESULTS: The UMLS Metathesaurus and Semantic Network was converted into an interactive graph database (https://github.com/dbmi-pitt/UMLS-Graph) delineating ontology relatedness. From this UMLS-graph, the CPT hierarchy was queried obtaining all paths from each code to the hierarchical apex. Of 1,853 added ratings, 43% and 76% were siblings and cousins of original OSS CPT codes. Of 857,577 VASQIP cases (mean age, 64±11years; 91% male; 75% white), 786,122 (92%) and 71,455 (8%) were rated in the original and added OSS. Compared to original, added OSS cases included more females (14% versus 9%) and frail patients (25% versus 19%) undergoing high stress procedures (11% versus 8%; all P <.001). Postoperative mortality consistently increased with OSS. Very low stress procedures had <0.5% (original, 0.4% [95%CI, 0.4%-0.5%] versus added, 0.9% [95%CI, 0.6%-1.2%]) and very high 3.8% (original, 3.5% [95%CI, 3.0%-4.0%] versus added, 5.8% [95%CI, 4.6-7.3%]) mortality rates. CONCLUSIONS: The synonymy and concepts relating biomedical data within the UMLS can be abstracted and efficiently used to expand the utility of existing clinical research tools.

Statistical analysis plan for the Surgery for Cancer with Option of Palliative Care Expert (SCOPE) trial: a randomized controlled trial of a specialist palliative care intervention for patients undergoing surgery for cancer.

BACKGROUND: The impact of specialist palliative care intervention in patients undergoing surgery for cancer has not been studied extensively. The SCOPE randomized controlled trial will investigate the effect of specialist palliative care intervention in cancer patients undergoing surgery for selected abdominal malignancies. The study protocol of the SCOPE Trial was published in December 2019. METHODS AND DESIGN: The SCOPE Trial is a single-center, single-blind, prospective, randomized controlled trial that will investigate specialist palliative care intervention for cancer patients undergoing surgery for selected abdominal malignancies. The study plans to enroll 236 patients that will be randomized to specialist palliative care (intervention arm) and usual care (control arm) in a 1:1 ratio. RESULTS: The primary outcome of the study is the Functional Assessment of Cancer Therapy-General (FACT-G) Trial Outcome Index (TOI) at 90 days postoperatively. Secondary outcomes of the study include the total FACT-G score at 90 days postoperatively, days alive at home without an emergency room visit within 90 days of operation, and all-cause mortality at 1 year after operation. Time frames for all outcomes will start on the day of surgery. CONCLUSION: This manuscript serves as the formal statistical analysis plan (version 1.0) for the SCOPE randomized controlled trial. The statistical analysis plan was completed on 6 April 2021. TRIAL REGISTRATION: ClinicalTrials.gov NCT03436290 . Registered on 16 February 2018.

Association Between Patient Frailty and Postoperative Mortality Across Multiple Noncardiac Surgical Specialties.

Importance: Frailty is an important risk factor for postoperative mortality. Whether the association between frailty and mortality is consistent across all surgical specialties, especially those predominantly performing lower stress procedures, remains unknown. Objective: To examine the association between frailty and postoperative mortality across surgical specialties. Design, Setting, and Participants: A cohort study was conducted across 9 noncardiac specialties in hospitals participating in the American College of Surgeons National Surgical Quality Improvement Program (NSQIP) and Veterans Affairs Surgical Quality Improvement Program (VASQIP) from January 1, 2010, through December 31, 2014, using multivariable logistic regression to evaluate the association between frailty and postoperative mortality. Data analysis was conducted from September 15, 2019, to April 30, 2020. Patients 18 years or older undergoing noncardiac procedures were included. Exposures: Risk Analysis Index measuring preoperative frailty categorized patients as robust (Risk Analysis Index ≤20), normal (21-29), frail (30-39), or very frail (≥40). Operative Stress Score (OSS) categorized procedures as low (1-2), moderate (3), and high (4-5) stress. Specialties were categorized by case-mix as predominantly low intensity (>75% OSS 1-2), moderate intensity (50%-75%), or high intensity (<50%). Main Outcomes and Measures: Thirty-day (both measures) and 180-day (VASQIP only) postoperative mortality. Results: Of the patients evaluated in NSQIP (n = 2 339 031), 1 309 795 were women (56.0%) and mean (SD) age was 56.49 (16.4) years. Of the patients evaluated in VASQIP (n = 426 578), 395 761 (92.78%) were men and mean (SD) age was 61.1 (12.9) years. Overall, 30-day mortality was 1.2% in NSQIP and 1.0% in VASQIP, and 180-day mortality in VASQIP was 3.4%. Frailty and OSS distributions differed substantially across the 9 specialties. Patterns of 30-day mortality for frail and very frail patients were similar in NSQIP and VASQIP for low-, moderate-, and high-intensity specialties. Frailty was a consistent, independent risk factor for 30- and 180-day mortality across all specialties. For example, in NSQIP, for plastic surgery, a low-intensity specialty, the odds of 30-day mortality in very frail (adjusted odds ratio [aOR], 27.99; 95% CI, 14.67-53.39) and frail (aOR, 5.1; 95% CI, 3.03-8.58) patients were statistically significantly higher than for normal patients. This was also true in neurosurgery, a moderate-intensity specialty, for very frail (aOR, 9.8; 95% CI, 7.68-12.50) and frail (aOR, 4.18; 95% CI, 3.58-4.89) patients and in vascular surgery, a high-intensity specialty, for very frail (aOR, 10.85; 95% CI, 9.83-11.96) and frail (aOR, 3.42; 95% CI, 3.19-3.67) patients. Conclusions and Relevance: In this study, frailty was associated with postoperative mortality across all noncardiac surgical specialties regardless of case-mix. Preoperative frailty assessment could be implemented across all specialties to facilitate risk stratification and shared decision-making.

Worse Than Death: Survey of Public Perceptions of Disability Outcomes After Hypothetical Traumatic Brain Injury.

OBJECTIVE: The aim of this study was to determine the health utility states of the most commonly used traumatic brain injury (TBI) clinical trial endpoint, the Extended Glasgow Outcome Scale (GOSE). SUMMARY BACKGROUND DATA: Health utilities represent the strength of one's preferences under conditions of uncertainty. There are insufficient data to indicate how an individual would value levels of disability after a TBI. METHODS: This was a cross-sectional web-based online convenience sampling adaptive survey. Using a standard gamble approach, participants evaluated their preferences for GOSE health states 1 year after a hypothetical TBI. The categorical GOSE was studied from vegetative state (GOSE2) to upper good recovery (GOSE8). Median (25th percentile, 75th percentile) health utility values for different GOSE states after TBI, ranging from -1 (worse than death) to 1 (full health), with 0 as reference (death). RESULTS: Of 3508 eligible participants, 3235 (92.22%) completed the survey. Participants rated lower GOSE states as having lower utility, with some states rated as worse than death, though the relationship was nonlinear and intervals were unequal between health states. Over 75% of participants rated a vegetative state (GOSE2, absence of awareness and bedridden) and about 50% rated lower severe disability (GOSE3, housebound needing all-day assistance) as conditions worse than death. CONCLUSIONS: In the largest investigation of public perceptions about post-TBI disability, we demonstrate unequally rated health states, with some states perceived as worse than death. Although limited by selection bias, these results may guide future comparative-effectiveness research and shared medical decision-making after neurologic injury.