An Executive Summary of the National Trauma Research Action Plan (NTRAP).

ABSTRACT: The National Trauma Research Action Plan (NTRAP) project successfully engaged multidisciplinary experts to define opportunities to advance trauma research and has fulfilled the recommendations related to trauma research from the National Academies of Sciences, Engineering and Medicine (NASEM) report. These panels identified more than 4,800 gaps in our knowledge regarding injury prevention and the optimal care of injured patients and laid out a priority framework and tools to support researchers to advance this field. Trauma research funding agencies and researchers can use this executive summary and supporting manuscripts to strategically address and close the highest priority research gaps. Given that this is the most significant public health threat facing our children, young adults, and military service personnel, we must do better in prioritizing these research projects for funding and providing grant support to advance this work. Through the Coalition for National Trauma Research (CNTR), the trauma community is committed to a coordinated, collaborative approach to address these critical knowledge gaps and ultimately reduce the burden of morbidity and mortality faced by our patients.

Experiences of Alaska Native people living with burn injury and opportunities for health system strengthening.

BACKGROUND: Injuries are a leading cause of death and disability for Alaska Native (AN) people. Alaska Native Tribal Health Consortium (ANTHC) is supporting the development of a burn care system that includes a partnership between Alaska Native Medical Center (ANMC) in Anchorage, AK and UW Medicine Regional Burn Center at Harborview Medical Center (HMC) in Seattle, WA. We aimed to better understand the experiences of AN people with burn injuries across the care continuum to aid development of culturally appropriate care regionalization. METHODS: We performed focus groups with twelve AN people with burn injury and their caregivers. A multidisciplinary team of burn care providers, qualitative research experts, AN care coordinator, and AN cultural liaison led focus groups to elicit experiences across the burn care continuum. Transcripts were analyzed using a phenomenological approach and inductive coding to understand how AN people and families navigated the medical and community systems for burn care and areas for improvement. RESULTS: Three themes were identified: 1-Challenges with local burn care in remote communities including limited first aid, triage, pain management, and wound care, as well as long-distance transport to definitive care; 2-Divergence between cultural values and medical practices that generated mistrust in the medical system, isolation from their support systems, and recovery goals that were not aligned with their needs; 3-Difficulty accessing emotional health support and a survivor community that could empower their resilience. CONCLUSION: Participants reported modifiable barriers to culturally competent treatment for burn injuries among AN people. The findings can inform initiatives that leverage existing resources, including expansion of the Extension for Community Healthcare Outcomes (ECHO) telementoring program, promulgation of the Phoenix Society Survivors Offering Assistance in Recovery (SOAR) to AK, coordination of regionalized care to reduce time away from AK and provide more comfortable community reintegration, and define rehabilitation goals in terms that align with personal goals and subsistence lifestyle skills. Long-distance transport times are non-modifiable, but better pre-hospital care could be achieved by harnessing existing telehealth services and adapting principles of prolonged field care to allow for triage, initial care, and resuscitation in remote environments.

Preliminary Exploration of Long-Term Patient Outcomes After Tracheostomy in Burns: A Burn Model System Study.

INTRODUCTION: Upper airway management is crucial to burn care. Endotracheal intubation is often performed in the setting of inhalation injury, burns of the face and neck, or large burns requiring significant resuscitation. Tracheostomy may be necessary in patients requiring prolonged ventilatory support. This study compares long-term, patient-reported outcomes in burn patients with and without tracheostomy. MATERIALS AND METHODS: Data from the Burn Model System Database, collected from 2013 to 2020, were analyzed. Demographic and clinical data were compared between those with and without tracheostomy. The following patient-reported outcomes, collected at 6-, 12-, and 24-mo follow-up, were analyzed: Veterans RAND 12-Item Health Survey (VR-12), Satisfaction with Life, Community Integration Questionnaire, Patient-Reported Outcomes Measurement Information System 29-Item Profile Measure, employment status, and days to return to work. Regression models and propensity-matched analyses were used to assess the associations between tracheostomy and each outcome. RESULTS: Of 714 patients included in this study, 5.5% received a tracheostomy. Mixed model regression analyses demonstrated that only VR-12 Physical Component Summary scores at 24-mo follow-up were significantly worse among those requiring tracheostomy. Tracheostomy was not associated with VR-12 Mental Component Summary, Satisfaction with Life, Community Integration Questionnaire, or Patient-Reported Outcomes Measurement Information System 29-Item Profile Measure scores. Likewise, tracheostomy was not found to be independently associated with employment status or days to return to work. CONCLUSIONS: This preliminary exploration suggests that physical and psychosocial recovery, as well as the ability to regain employment, are no worse in burn patients requiring tracheostomy. Future investigations of larger scale are still needed to assess center- and provider-level influences, as well as the influences of various hallmarks of injury severity. Nonetheless, this work should better inform goals of care discussions with patients and families regarding the use of tracheostomy in burn injury.

Trajectories of physical health-related quality of life among adults living with burn injuries: A burn model system national database investigation to improve early intervention and rehabilitation service delivery.

INTRODUCTION: Understanding trajectories of recovery in key domains can be used to guide patients, families, and caregivers. The purpose of this study was to describe common trajectories of physical health over time and to examine predictors of these trajectories. METHOD: Adults with burn injuries completed self-reported assessments of their health-related quality of life (HRQOL) as measured by the SF-12® Physical Component Summary (PCS) score at distinct time points (preinjury via recall, index hospital discharge, and at 6-, 12-, and 24 months after injury). Growth mixture modeling (GMM) was used to model PCS scores over time. Covariables included burn size, participant characteristics, and scores from the Community Integration Questionnaire (CIQ)/Social Integration portion, Satisfaction With Life Scale (SWLS), and Satisfaction With Appearance Scale (SWAP). RESULTS: Data from 939 participants were used for complete-case analysis. Participants were 72% male, 64% non-Hispanic White, with an average age of 44 years and an average burn size of 20% of total body surface area (TBSA). The best fitting model suggested three distinct trajectories (Class 1 through 3) for HRQOL. We titled each Class according to the characteristics of their trajectory. Class 1 (recovering; n = 632), Class 2 (static; n = 77), and Class 3 (weakened; n = 205) reported near average HRQOL preinjury, then reported lower scores at discharge, with Class 1 subsequently improving to preinjury levels and Class 3 improving but not reaching their preinjury quality of life. Class 3 experienced the largest decrease in HRQOL. Class 2 reported the lowest preinjury HRQOL and remained low for the next 2 years, showing minimal change in their HRQOL. CONCLUSIONS: These findings emphasize the importance of early universal screening and sustained intervention for those most at risk for low HRQOL following injury. For Class 2 (static), lower than average HRQOL before their injury is a warning. For Class 3 (weakened), if the scores at 6 months show a large decline, then the person is at risk for not regaining their HRQOL by 24 months and thus needs all available interventions to optimize their outcomes. Results of this study provide guidance for how to identify people with burn injury who would benefit from more intensive rehabilitation to help them achieve or regain better HRQOL. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Defining numerical cut points for mild, moderate, and severe pain in adult burn survivors: A northwest regional burn model system investigation.

INTRODUCTION: Pain is a common and often debilitating sequela of burn injury. Burn pain develops following damage to peripheral sensory nerves and the release of inflammatory mediators from injury. Burn pain is complex and can include background and procedural pain that result from the injury itself, wound care, stretching, and surgery. Clinicians and researchers need valid and reliable pain measures to guide screening, treatment, and research protocols. Unlike other conditions, visual analog, or numeric pain rating scale (VAS/NRS) scores that represent mild, moderate, and severe pain among people with burn injury have not been established. The aim of this study was to identify the most suitable average pain intensity rating scores for mild, moderate, and severe pain in adult burn survivors using a PROMIS Pain Interference (PROMIS-PI) short form. METHODS: An average pain intensity VAS/NRS score (0-10) and customized PROMIS-PI short form were administered to adults with burn injury treated at a regional burn center at hospital discharge (baseline) and at 6, 12, and 24-months after injury. To identify pain intensity scores that represent mild, moderate, and severe pain, we computed F values and Bayesian Information Criterion (BIC) statistics associated with multiple ANOVA comparisons for mean pain interference scores by various pain intensity cut points. Six possible cut points (CP) were compared: CP 3,6; 3,7; 4,6; 4,7; 2,5; and 3,5. Optimal cut points were considered those with the highest ANOVA F statistics. Models with similar F statistics were also compared with BIC. RESULTS: Data from a sample of 253 participants (83% white, 66% male, mean age 47 years) with VAS/NRS pain intensity and PROMIS-PI scores at one or more timepoints were analyzed. The optimal classification for mild, moderate, and severe pain was CP 2,5 at baseline and 12-months. Although CP 3,6 had the highest F value at 6-months, there was not strong evidence to support CP 3,6 over CP 2,5 (BIC difference: 2.9); similarly, CP 3,7 had the highest value at 24-months, but the BIC difference over CP 2,5 was only 2.2. CONCLUSIONS: VAS/NRS scores for pain among adults with burn injury can be categorized as mild (0-2), moderate (3-5), and severe (6-10). These findings advance our understanding regarding the meaning of pain intensity ratings after burn injury, and provide an objective definition for clinical management, quality improvement, and pain research.

Posttraumatic Stress Disorder Symptom Clusters as Predictors of Pain Interference in Burn Survivors: A Burn Model System National Database Study.

Individuals who experience burns are at higher risk of developing posttraumatic stress disorder and chronic pain. A synergistic relationship exists between posttraumatic stress disorder and chronic pain. We sought to evaluate the role of individual posttraumatic stress disorder symptom clusters as predictors of pain interference. We hypothesized that the hyperarousal and emotional numbing symptom clusters would be predictive of pain interference, even when accounting for the other two posttraumatic stress disorder symptom clusters, pain intensity, and other covariates. Multivariate linear regression analyses were completed using data from the Burn Model System National Database. A total of 439 adult participants had complete responses on self-report measures assessing posttraumatic stress disorder symptoms, pain intensity, and pain interference at 6-month after discharge and were included in analyses. Results indicate hyperarousal (B = .10, p = .03) and emotional numbing (B = .13, p = .01) posttraumatic stress disorder symptom clusters were each significantly associated with pain interference, even when accounting for pain intensity (B = .64, p < .001). Results highlight the importance of the emotional numbing and hyperarousal posttraumatic stress disorder symptom clusters in explaining pain interference. Findings suggest that when posttraumatic stress disorder symptoms or chronic pain are present, screening for and treating either condition may be warranted to reduce pain interference. Further, psychological interventions that target emotional numbing and hyperarousal posttraumatic stress disorder symptoms may be fruitful for promoting better coping with chronic pain and reducing pain interference.

The Effect of Distance to Treatment Center on Long-Term Outcomes of Burn Patients.

Geospatial proximity to American Burn Association (ABA)-verified burn centers or self-designated burn care facilities varies across the country. This study evaluates the effect of distance to treatment center on long-term, patient-reported outcomes. Data from the Burn Model System (BMS) National Longitudinal Database were analyzed. Demographic and clinical data were compared between three cohorts stratified by distance to BMS center (<20, 20-49.9, ≥50 miles). Distance to BMS center was calculated as driving distance between discharge and BMS center ZIP code centroids. The following patient-reported outcomes, collected at 12-months follow-up, were examined: Veterans RAND 12-Item Health Survey (VR-12), Satisfaction with Life (SWL) scale, employment status, and days to return to work. Mixed model regression analyses were used to examine the associations between distance to BMS center and each outcome, controlling for demographic and clinical variables. Of 726 patients included in this study, 26.3% and 28.1% were <20 and between 20 and 49.9 miles to a BMS center, respectively; 46.6% were ≥50 miles to a BMS center. Greater distance was associated with white/non-Hispanic race/ethnicity, preinjury employment, flame injury, and larger burn size (P < .001). Regression analyses did not identify significant associations between distance to BMS center and any patient-reported outcomes. This study suggests that patients treated at BMS centers have similar long-term, patient-reported outcomes of physical and psychosocial function, as well as employment, despite centralization of burn care and rehabilitation services. Given a steady decline in the incidence of burn injury, continued concentration of key resources is logical and safe.

Burn Wound Bed Management.

Critical to the success of modern burn care is the management of the burn wound. Timely and complete removal of nonviable tissue is complicated by the irreplaceable nature of the tissue lost either through the burn injury or as "collateral damage" as part of the treatment. Challenges in distinguishing between viable and nonviable tissue and "replacing the irreplaceable" are discussed alongside potential disruptive technologies which could fundamentally change how burn care is delivered. Advances in burn wound bed management forms the foundation on which the goal of zero preventable death and disability after burn injury can be achieved.

Developing a National Trauma Research Action Plan: Results from the long-term outcomes research gap Delphi survey.

BACKGROUND: In the National Academies of Sciences, Engineering, and Medicine 2016 report on trauma care, the establishment of a National Trauma Research Action Plan to strengthen and guide future trauma research was recommended. To address this recommendation, the Department of Defense funded the Coalition for National Trauma Research to generate a comprehensive research agenda spanning the continuum of trauma and burn care. We describe the gap analysis and high-priority research questions generated from the National Trauma Research Action Plan panel on long-term outcomes. METHODS: Experts in long-term outcomes were recruited to identify current gaps in long-term trauma outcomes research, generate research questions, and establish the priority for these questions using a consensus-driven, Delphi survey approach from February 2021 to August 2021. Panelists were identified using established Delphi recruitment guidelines to ensure heterogeneity and generalizability including both military and civilian representation. Panelists were encouraged to use a PICO format to generate research questions: Patient/Population, Intervention, Compare/Control, and Outcome model. On subsequent surveys, panelists were asked to prioritize each research question on a 9-point Likert scale, categorized to represent low-, medium-, and high-priority items. Consensus was defined as ≥60% of panelists agreeing on the priority category. RESULTS: Thirty-two subject matter experts generated 482 questions in 17 long-term outcome topic areas. By Round 3 of the Delphi, 359 questions (75%) reached consensus, of which 107 (30%) were determined to be high priority, 252 (70%) medium priority, and 0 (0%) low priority. Substance abuse and pain was the topic area with the highest number of questions. Health services (not including mental health or rehabilitation) (64%), mental health (46%), and geriatric population (43%) were the topic areas with the highest proportion of high-priority questions. CONCLUSION: This Delphi gap analysis of long-term trauma outcomes research identified 107 high-priority research questions that will help guide investigators in future long-term outcomes research. LEVEL OF EVIDENCE: Diagnostic Tests or Criteria; Level IV.

Are burns a chronic condition? Examining patient reported outcomes up to 20 years after burn injury-A Burn Model System National Database investigation.

BACKGROUND: People living with burn injury often face long-term physical and psychological sequelae associated with their injuries. Few studies have examined the impacts of burn injuries on long-term health and function, life satisfaction, and community integration beyond 5 years postinjury. The purpose of this study was to examine these outcomes up to 20 years after burn injury. METHODS: Data from the Burn Model System National Longitudinal Database (1993-2020) were analyzed. Patient-reported outcome measures were collected at discharge (preinjury status recall) and 5 years, 10 years, 15 years, and 20 years after injury. Outcomes examined were the SF-12/VR-12 Physical Component Summary and Mental Component Summary, Satisfaction with Life Scale, and Community Integration Questionnaire. Trajectories were developed using linear mixed models with repeated measures of outcome scores over time, controlling for demographic and clinical variables. RESULTS: The study population included 421 adult burn survivors with a mean age of 42.4 years. Lower Physical Component Summary scores (worse health) were associated with longer length of hospital stay, older age at injury and greater time since injury. Similarly, lower Mental Component Summary scores were associated with longer length of hospital stay, female sex, and greater time since injury. Satisfaction with Life Scale scores decrease negatively over time. Lower Community Integration Questionnaire scores were associated with burn size and Hispanic/Latino ethnicity. CONCLUSION: Burn survivors' physical and mental health and satisfaction with life worsened over time up to 20 years after injury. Results strongly suggest that future studies should focus on long-term follow-up where clinical interventions may be necessary. LEVEL OF EVIDENCE: Prognostic and Epidemiologic; Level III.

Correlation Between the Warrior/Worrier Gene on Post Burn Pruritus and Scarring: A Prospective Cohort Study.

INTRODUCTION: Associations between genetic variation and clinical conditions suggest that single nucleotide polymorphisms (SNPs) might correlate with postburn outcomes. COMT modulates catecholamine metabolism, and polymorphisms within the rs4680 allele result in variable enzyme activity. Catechol-amines are known to modulate the inflammatory process and may affect scar formation. The aim of this study was to determine whether variants in the rs4680 SNP of the COMT gene are associated with post-burn pruritus and scarring. METHODS: Adult burn patients, admitted between 2007 and 2017, with deep partial-thickness burns or delayed healing provided blood samples for genotyp-ing and self-reported itch scores within 1 year of injury. Scarring was measured using the Vancouver Scar Scale (VSS). Itch scores ≥ 4 and VSS scores >7 were considered severe. Genomic deoxyribonucleic acid was genotyped for the rs4680 SNP using realtime polymerase chain reaction (PCR). RESULTS: Median itch and VSS scores were highest for GG homozygotes and lowest for AA homozygotes. This difference was statistically significant for VSS score (P < 0.0001) and approached significance for itch (P = 0.052). After accounting for confounding variables, including race/ethnicity, age, sex, and burn size, the GG homozygotes demonstrated worse scarring (odds ratio 1.88, P = 0.005) compared to AG heterozygotes whereas the AA homozygotes trended towards a protective effect against scarring (odds ratio 0.71, P = 0.10). itch did not demonstrate a statistically significant difference between rs4680 genotype. CONCLUSIONS: Our analysis identifies a trend between COMT genotype with scarring, with rs4680 genetic variation constituting an independent risk factor for VSS score.

Developing a national trauma research action plan: Results from the Burn Research Gap Delphi Survey.

BACKGROUND: The 2016 National Academies of Science, Engineering and Medicine call for a national integrated, military-civilian trauma action plan to achieve zero preventable deaths and disability after injury included a proposal to establish a National Trauma Research Action Plan to "strengthen trauma research and ensure that the resources available for this research are commensurate with the importance of injury and the potential for improvement in patient outcomes." The Department of Defense funded the Coalition for National Trauma Research to generate a comprehensive research agenda spanning the continuum of trauma/burn care from prehospital to rehabilitation. The Burn/Reconstructive Surgery group represents one focus area for this research agenda development. METHODS: Experts in burn and reconstructive surgery research identified gaps in knowledge, generated research questions and prioritized questions using a consensus driven Delphi survey approach. Participants were identified using established Delphi recruitment guidelines to ensure heterogeneity and generalizability with military and civilian representatives. Literature reviews informed the panel. Panelists were encouraged to use a PICO format to generate research questions: Patient/Population; Intervention; Compare/Control; Outcome. Participants ranked the priority of each question on a nine-point Likert scale, which was categorized to represent low, medium, and high priority items. Consensus was defined based on ≥60% panelist agreement. RESULTS: Subject matter experts generated 949 research questions in 29 Burn & 26 Reconstruction topics. Five hundred ninety-seven questions reached consensus. Of these, 338 (57%) were high-priority, 180 (30%), medium-priority, and 78 (13%) low-priority questions. CONCLUSION: Many high-priority questions translate to complex wound management and outcomes. Panel recognition that significant gaps in knowledge exist in understanding functional outcomes after injury underscores the importance of long-term recovery metrics even when studying acute injury or interventions such as resuscitation or inhalation injury. Funding agencies and burn/reconstructive surgery researchers should consider these gaps when they prioritize future research. LEVEL OF EVIDENCE: Expert consensus, Level IV.

Adolescents with and without head and neck burns: comparison of long-term outcomes in the burn model system national database.

INTRODUCTION: Facial burns account for persistent differences in psychosocial functioning in adult burn survivors. Although adolescent burn survivors experience myriad chronic sequelae, little is known about the effect of facial injuries. This study examines differences in long-term outcomes with and without head and neck involvement. METHODS: Data collected for 392 burn survivors between 14-17.9 years of age from the Burn Model System National Database (2006-2015) were analyzed. Comparisons were made between two groups based on presence of a head and neck burn (H&N) using the following patient reported outcome measures: Satisfaction with Appearance Scale, Satisfaction with Life Scale, Community Integration Questionnaire, and Short Form-12 Health Survey at 6, 12, and 24 months after injury. Regression analyses were used to assess association between outcome measures and H&N group at 12-months. RESULTS: The H&N group had more extensive burns, had longer hospital stays, were more likely to be burned by fire/flame and were more likely to be Hispanic compared to the non-H&N group. Regression analysis found that H&N burn status was associated with worse SWAP scores. No significant associations were found between H&N burn status and other outcome measures. CONCLUSIONS: Adolescents with H&N burn status showed significantly worse satisfaction with appearance at 12-months after injury. Future research should examine interventions to help improve body image and coping for adolescent burn survivors with head and neck burns.

Burn model system national longitudinal database representativeness by race, ethnicity, gender, and age.

INTRODUCTION: Representativeness of research populations impacts the ability to extrapolate findings. The Burn Model System (BMS) National Database is one of the largest prospective, longitudinal, multi-center research repositories collecting patient-reported outcomes after burn injury. OBJECTIVE: To assess if the BMS Database is representative of the population that is eligible to participate. DESIGN: Data on adult burn survivors who were eligible for the BMS Database from 2015 to 2019 were analyzed. SETTING: Not applicable. PARTICIPANTS: Burn survivors treated at BMS centers meeting eligibility criteria for the BMS Database. Eligibility for the database is based on burn size and receipt of autografting surgery. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE(S): Race, ethnicity, gender, and age were compared between individuals who did and did not enroll. Regression analysis examined the correlation between demographic characteristics and study enrollment. Additional regression analysis examined the association between enrollment and the intersection of race, ethnicity, and gender. RESULTS: A total of 982 adult burn survivors were eligible for the BMS database during the study period. Of those who were eligible, 72.1% Enrolled and 27.9% were Not Enrolled. The Enrolled group included more female and more younger survivors compared to the Not Enrolled group. In regression analyses, Black/African American burn survivors were less likely and individuals identifying as female were more likely to enroll in the BMS Database. Furthermore, White men and women were more likely to enroll compared to Black/African American men and women, and non-Hispanic/Latino men were more likely to enroll compared to Hispanic/Latino men. CONCLUSIONS: This study found differences in BMS Database enrollment by race, ethnicity, and gender. Further research is warranted to investigate causes for the disparities found in this study. In addition, strategies are needed to improve enrollment to ensure future representativeness.

The relation between satisfaction with appearance and race and ethnicity: A National Institute on Disability, Independent Living, and Rehabilitation Research burn model system study.

Research supports that people of color in the U.S. have poorer outcomes after burn injury compared to White individuals. The current study sought to explore burn health disparities by testing the relationship between racial and ethnic minority status, a proxy for systemic discrimination due to race and ethnicity, with two key constructs linked to functional outcomes, satisfaction with appearance and social community integration. Participants included 1318 burn survivors from the Burn Model System National Database (mean age = 40.2, SD = 12.7). Participants completed measures of satisfaction with appearance and social community integration at baseline, 6-, 12-, and 24-months after burn injury. Linear regressions revealed that racial and ethnic minority status significantly related to lower satisfaction with appearance and social community integration compared to White individuals at all time points. In addition, satisfaction with appearance continued to significantly relate to greater social community integration even while accounting for race and ethnicity, age, sex, burn size, and physical disability at 6-, 12-, and 24-month time points. Overall, the study supports that racial and ethnic minority burn survivors report greater dissatisfaction with their appearance and lower social community reintegration after burn injury.

Temperature Sensitivity After Burn Injury: A Burn Model System National Database Hot Topic.

People living with burn injury often report temperature sensitivity. However, its epidemiology and associations with health-related quality of life (HRQOL) are unknown. We aimed to characterize temperature sensitivity and determine its impact on HRQOL to inform patient education after recovery from burn injury. We used the multicenter, longitudinal Burn Model System National Database to assess temperature sensitivity at 6, 12, and 24 months after burn injury. Chi-square and Kruskal-Wallis tests determined differences in patient and injury characteristics. Multivariable, multilevel generalized linear regression models determined the association of temperature sensitivity with Satisfaction with Life (SWL) scale scores and Veterans RAND 12 (VR-12) physical and mental health summary component (MCS) scores. The cohort comprised 637 participants. Two thirds (66%) experienced temperature sensitivity. They had larger burns (12% TBSA, interquartile range [IQR] 4-30 vs 5% TBSA, IQR 2-15; P < .0001), required more grafting (5% TBSA, IQR 1-19 vs 2% TBSA, IQR 0-6; P < .0001), and had higher intensity of pruritus at discharge (11% severe vs 5% severe; P = .002). After adjusting for confounding variables, temperature sensitivity was strongly associated with lower SWL (odds ratio [OR] -3.2, 95% confidence interval [CI] -5.2, -1.1) and MCS (OR -4.0, 95% CI -6.9, -1.2) at 6 months. Temperature sensitivity decreased over time (43% at discharge, 4% at 24 months) and was not associated with poorer HRQOL at 12 and 24 months. Temperature sensitivity is common after burn injury and associated with worse SWL and MCS during the first year after injury. However, temperature sensitivity seems to improve and be less intrusive over time.

Physical and Psychological Recovery Following Toxic Epidermal Necrolysis: A Patient Survey.

Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN) are acute, life-threatening diseases that cause sloughing of the skin and mucous membranes. Despite improved survival rates, few studies focus on long-term outcomes. We conducted a single-center review of all patients with SJS/TEN admitted from January 2008 to 2014. SJS/TEN survivors were invited to participate in the validated Veterans RAND 12-Item Health Survey (VR-12) to assess health-related quality of life using a mental health composite score and physical health component score (PCS). The sample was compared to U.S. norms using one-sample two-tailed t tests. A second questionnaire addressed potential long-term medical complications related to SJS/TEN. Of 81 treated subjects, 24 (30%) long-term survivors responded. Participants identified cutaneous sequelae most frequently (79%), followed by nail problems (70%), oral (62%), and ocular (58%) sequalae. Thirty-eight percent rated their quality of life to be "unchanged" to "much better" since their episode of SJS/TEN. The average PCS was lower than U.S. population norms (mean: 36 vs 50, P = .006), indicating persistent physical sequelae from SJS/TEN. These results suggest that SJS/TEN survivors continue to suffer from long-term complications that impair their quality of life and warrant ongoing follow-up by a multidisciplinary care team.

Inpatient and Postdischarge Outcomes Following Inhalation Injury Among Critically Injured Burn Patients.

Inhalation injury is associated with high inpatient mortality, but the impact of inhalation injury after discharge and on non-mortality outcomes is poorly characterized. To address this gap, we evaluated the effect of inhalation injury on postdischarge morbidity, mortality, and hospital readmissions among patients who sustained burn injury, as well as on in-hospital outcomes for context. This was a retrospective cohort study of patients with cutaneous fire/flame burns admitted to a burn center intensive care unit from January 1, 2009 to December 31, 2015, with or without inhalation injury. Records were linked to statewide hospital admission and vital statistics databases to assess postdischarge outcomes. Mixed-effects Poisson regression was used to assess mortality, complications, and readmissions. The overall cohort included 830 patients with cutaneous burns; of these, 201 patients had inhalation injury. In-hospital mortality was 31% among inhalation injury patients vs 6% in patients without inhalation injury (adjusted OR 2.35; 95% CI 1.66-3.31). Inhalation injury was also associated with an increased risk of in-hospital pneumonia and tracheostomy (P < .05 for all). Inhalation injury was not associated with greater postdischarge mortality, all-cause readmission, readmission for pulmonary diagnosis, or readmission requiring intubation. Among the subset of patients with bronchoscopy-confirmed inhalation injury (n = 124; 62% of inhalation injuries), a higher injury grade was not associated with greater inpatient or postdischarge mortality. Inhalation injury was associated with increased early morbidity and mortality, but did not contribute to postdischarge mortality or readmission. These findings have implications for shared decision making with patients and families and for estimating healthcare utilization after initial hospitalization.

"Living Well" After Burn Injury: Using Case Reports to Illustrate Significant Contributions From the Burn Model System Research Program.

The Burn Model System (BMS) program of research has been funded since 1993 by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). The overarching aim of this program is to improve outcomes and quality of life for people with burns in the areas of health and function, employment, and community living and participation. This review reports on BMS contributions that have affected the lives of individuals with a significant burn injury using case reports to associate BMS contributions with recovery. In January 2020, current BMS grantee researchers assessed peer-reviewed BMS publications from 1994 to 2020. Using case report methodology, contributions were linked to three individuals treated at one of the four Burn Model System institutions. With over 25 years of NIDILRR funding, unique BMS contributions to patient recovery were identified and categorized into one of several domains: treatment, assessment measures, sequelae, peer support, employment, and long-term functional outcomes. A second review for significant results of BMS research that add to the understanding of burn injury, pathophysiology, and recovery research was identified and categorized as injury recovery research. The case study participants featured in this review identified select NIDILRR research contributions as having direct, personal benefit to their recovery. The knowledge generation and clinical innovation that this research program has contributed to our collective understanding of recovery after burn injury is considerable. Using case study methodology with three adult burn survivors, we highlight the impact and individual significance of program findings and reinforce the recognition that the value of any clinical research must have relevance to the lives of the study population.

Mortality prognostication scores do not predict long-term, health-related quality of life after burn: A burn model system national database study.

OBJECTIVE: Despite improved mortality rates after burn injury, many patients face significant long-term physical and psychosocial disabilities. We aimed to determine whether commonly used mortality prognostication scores predict long-term, health-related quality of life after burn injury. By doing so, we might add evidence to support goals of care discussions and facilitate shared decision-making efforts in the hours and days after a life-changing injury. METHODS: We used the multicenter National Institute of Disability, Independent Living and Rehabilitation Research Burn Model System database (1994-2019) to analyze SF-12 physical (PCS) and mental component (MCS) scores among survivors one year after major burn injury. Ninety percent of the observations were randomly assigned to a model development dataset. Multilevel, mixed-effects, linear regression models determined the relationship between revised Baux and Ryan Scores and SF-12 measures. Additionally, we tested a model with disaggregated independent and other covariates easily obtained around the time of index admission: age, sex, race, burn size, inhalation injury. Residuals from the remaining 10% of observations in the validation dataset were examined. RESULTS: The analysis included 1606 respondents (median age 42 years, IQR 28-53 years; 70% male). Median burn size was 16% TBSA (IQR 6-30) and 13% of respondents sustained inhalation injury. Higher revised Baux and Ryan Scores and age, burn size, and inhalation injury were significantly correlated with lower PCS, but were not correlated with MCS. Female sex, black race, burn size, and inhalation injury correlated with lower MCS. All models poorly explained the variance in SF-12 scores (adjusted r2 0.01-0.12). CONCLUSION: Higher revised Baux and Ryan Scores negatively correlated with long-term physical health, but not mental health, after burn injury. Regardless, the models poorly explained the variance in SF-12 scores one year after injury. More accurate models are needed to predict long-term, health-related quality of life and support shared decision-making during acute burn care.