Exploring the similarities and differences of burn registers globally: Results from a data dictionary comparison study.

INTRODUCTION: Pooling and comparing data from the existing global network of burn registers represents a powerful, yet untapped, opportunity to improve burn prevention and care. There have been no studies investigating whether registers are sufficiently similar to allow data comparisons. It is also not known what differences exist that could bias analyses. Understanding this information is essential prior to any future data sharing. The aim of this project was to compare the variables collected in countrywide and intercountry burn registers to understand their similarities and differences. METHODS: Register custodians were invited to participate and share their data dictionaries. Inclusion and exclusion criteria were compared to understand each register population. Descriptive statistics were calculated for the number of unique variables. Variables were classified into themes. Definition, method, timing of measurement, and response options were compared for a sample of register concepts. RESULTS: 13 burn registries participated in the study. Inclusion criteria varied between registers. Median number of variables per register was 94 (range 28 - 890), of which 24% (range 4.8 - 100%) were required to be collected. Six themes (patient information, admission details, injury, inpatient, outpatient, other) and 41 subthemes were identified. Register concepts of age and timing of injury show similarities in data collection. Intent, mechanism, inhalational injury, infection, and patient death show greater variation in measurement. CONCLUSIONS: We found some commonalities between registers and some differences. Commonalities would assist in any future efforts to pool and compare data between registers. Differences between registers could introduce selection and measurement bias, which needs to be addressed in any strategy aiming to facilitate burn register data sharing. We recommend the development of common data elements used in an international minimum data set for burn injuries, including standard definitions and methods of measurement, as the next step in achieving burn register data sharing.

Examining the association between military service history and outcomes after burn injury.

INTRODUCTION: The association between military service history and long-term outcomes after burn injury is unknown. This study uses data from the Burn Model System National Database to compare outcomes of individuals with and without self-reported military service history. METHODS: Outcome measures were assessed at 12 months after injury including the Veterans Rand-12 Item Health Survey/Short Form-12, Satisfaction With Life Scale, Patient Reported Outcomes Measure Information System 29, 4-D Itch scale, Post Traumatic Stress Disorder Check List - Civilian Version, self-reported Post Traumatic Stress Disorder, and employment status. This study included 675 people with burns of whom 108 reported a history of military service. RESULTS: The military service history group was more likely to be older, and male. Those with military service were most likely to be on Medicare insurance and those without military service history were most likely to be on Private Insurance/HMP/PPO. No significant differences were found between those with and without military service history in the outcome measures. CONCLUSIONS: Further research should examine differences in outcomes between civilians and those with military service history, including elements of resilience and post traumatic growth.

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).

Worse Itch and Fatigue in Racial and Ethnic Minorities: A Burn Model System Study.

Racial and ethnic minority patients experience worse hypertrophic scars after burn injury than White patients. Subsequently, minority patients encounter differences in scar-related recovery domains such as itch and fatigue. This study examines disparities regarding postburn injury itch and fatigue in minority patients to better inform counseling and treatment considerations. From the multicenter National Institute of Disability, Independent Living and Rehabilitation Research Burn Model System Database (2015-2019), outcomes were analyzed at three time-points (discharge from index hospitalization, 6- and 12-months post-injury) using the 5D Itch and PROMIS-29 Fatigue measures. Multilevel linear mixed effects regression modeling analyzed associations between race/ethnicities and outcomes over time. Of 893 total patients, minority patients reported higher/worse itch scores at all time points compared to White patients. Itch scores were significantly higher for Black patients at 6 months (ß = 1.42, P = .03) and 12 months (ß = 3.36, P < .001) when compared to White patients. Black patients reported higher fatigue scores than White patients at all time points. Fatigue scores were significantly higher for Hispanic/Latino patients at discharge (ß = 6.17, P < .001), 6 months (ß = 4.49, P < .001), and 12 months (ß = 6.27, P < .001) than White patients. This study supports investigation of potential factors leading to increased itch and fatigue such as sociocultural factors, disparities in healthcare access, and psychosocial impacts of these symptoms. In the short-term, minority patients may benefit from additional counseling and focused treatments addressing itch and fatigue after burn injury.

Impacts of Financial Assistance on Quality of Life Among People Living With Burn Injury: Matched Cohort Analysis of the National Institute on Disability, Independent Living and Rehabilitation Research Burn Model System Database.

Disparities in socioeconomic status and minority status affect the risk of burn injury and the severity of that injury, thus affecting the subsequent cost of care. We aimed to characterize the demographic details surrounding receipt of financial assistance due to burn injury and its relationship with health-related quality of life scores. Participants ≥18 from Burn Model System National Longitudinal Database (BMS) with complete demographic data were included (n = 4330). Nonresponders to financial assistance questions were analyzed separately. The remaining sample (n = 1255) was divided into participants who received financial assistance because of burn injury, those who received no financial assistance, and those who received financial assistance before injury and as a result of injury. A demographic and injury-characteristic comparison was conducted. Health-related quality of life metrics (Satisfaction with Life, Short Form-12/Veterans RAND 12-Item Health Survey, Community Integration Questionnaire Social Component, and the Post-Traumatic Growth Inventory) were analyzed preinjury, then 6-months, 1-year, and 2-years postinjury. A matched cohort analysis compared these scores. When compared to their no financial assistance counterparts, participants receiving financial assistance due to burns were more likely to be minorities (19% vs 14%), have more severe injuries (%TBSA burn 21% vs 10%), and receive workers' compensation (24% vs 9%). They also had lower health-related quality of life scores on all metrics except the post-traumatic growth inventory. Financial assistance may aid in combating disparities in posttraumatic growth scores for participants at the greatest risk of financial toxicity but does not improve other health-related quality of life metrics.

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.

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.

Geographic Variation in Outcomes After Burn Injury: A Burn Model System National Database Study.

BACKGROUND: Geography is an important yet underexplored factor that may influence the care and outcomes of burn survivors. This study aims to examine the impact of geography on physical and psychosocial function after burn injury. METHODS: Data from the Burn Model Systems National Database (1997-2015) were analyzed. Individuals 18 years and older who were alive at discharge were included. Physical and psychosocial functions were assessed at 6, 12, and 24 months postinjury using the following patient-reported outcome measures: Community Integration Questionnaire, Physical Composite Scale and Mental Composite Scale of the 12-Item Short Form Health Survey, Satisfaction with Appearance Scale, and Satisfaction with Life Scale. Descriptive statistics were generated for demographic and medical data, and mixed regression models were used to assess the impact of geography on long-term outcomes. RESULTS: The study included 469 burn survivors from the Centers for Medicare and Medicaid Services regions 10, 31 from region 8, 477 from region 6, 267 from region 3, and 41 from region 1. Participants differed significantly by region in terms of race/ethnicity, burn size, burn etiology, and acute care length of stay (P < 0.001). In adjusted mixed model regression analyses, scores of all 5 evaluated outcome measures were found to differ significantly by region (P < 0.05). CONCLUSIONS: Several long-term physical and psychosocial outcomes of burn survivors vary significantly by region. This variation is not completely explained by differences in population characteristics. Understanding these geographical differences may improve care for burn survivors and inform future policy and resource allocation.

Postacute Care Setting Is Associated With Employment After Burn Injury.

OBJECTIVE: To examine differences in long-term employment outcomes in the postacute care setting. DESIGN: Retrospective review of the prospectively collected Burn Model System National Database. SETTING AND PARTICIPANTS: A total of 695 adult survivors of burn injury enrolled between May 1994 and June 2016 who required postacute care at a Burn Model System center following acute care discharge were included. Participants were divided into 2 groups based on acute care discharge disposition. Those who received postacute care at an inpatient rehabilitation facility (IRF) following acute care were included in the IRF group (N=447), and those who were treated at a skilled nursing facility, long-term care hospital, or other extended-care facility following acute care were included in the Other Rehab group (N=248). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Employment status at 12 months postinjury. Propensity score matching and logistic regression were utilized to determine the effect of postacute care setting on employment status. RESULTS: Individuals in the IRF group had larger burns and were more likely to have an inhalation injury and to undergo amputation. At 12 months postinjury, the IRF group had over 9 times increased odds of being employed compared to the Other Rehab group, using propensity score matching (P=.046). CONCLUSIONS: While admitting patients with more severe injuries, IRFs provided a long-term benefit for survivors of burn injury in terms of regaining employment. Given the current lack of evidence-based guidelines on postacute care decisions, the results of this study shed light on the potential benefits of the intensive services provided at IRFs in this population.

Perspectives on self-management in multiple sclerosis: a focus group study.

The aim of this study was to elucidate the experience of self-management among people with multiple sclerosis (MS) and gather their input to inform a self-management intervention. Twelve people with MS participated in focus groups in which they were asked open-ended questions about MS symptoms, challenges, overcoming challenges, symptom management, and treatment preferences. The results suggest four major themes: 1) "The Everyday Experience of MS," including comments about symptoms and their impact on functioning; 2) "Motivation for Self-Management," including descriptions of motivation originating from physical necessity, success with other management techniques, and external sources; 3) "Coping Strategies and Skills," including descriptions of changing behaviors, expanding social support networks, finding resources, utilizing medical treatment, and monitoring symptoms; and 4) "Vision for a Self-Management Intervention," including suggestions that an intervention be individualized, be motivating, and provide resources. The results of this study can inform the design and implementation of self-management interventions. Experiences described by participants are consistent with other qualitative reports suggesting the active role people with MS play in managing their condition. Intervention approaches must consider the complex constellation of symptoms associated with MS and provide individualized treatments that enhance the person's ability to manage their symptoms, barriers presented by such symptoms, and their health care.