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.

Neuropathic Pain After Burn Injury: A Severe and Common Problem in Recovery.

OBJECTIVE: The aim of this study was to address the limited understanding of neuropathic pain (NP) among burn survivors by comprehensively examining its prevalence and related factors on a national scale using the Burn Model System (BMS) National Database. BACKGROUND: NP is a common but underexplored complaint among burn survivors, greatly affecting their quality of life and functionality well beyond the initial injury. Existing data on NP and its consequences in burn survivors are limited to select single-institution studies, lacking a comprehensive national perspective. METHODS: The BMS National Database was queried to identify burn patients responding to NP-related questions at enrollment, 6 months, 12 months, 2 years, and 5 years postinjury. Descriptive statistics and regression analyses were used to explore associations between demographic/clinical characteristics and self-reported NP at different time points. RESULTS: There were 915 patients included for analysis. At discharge, 66.5% of patients experienced NP in their burn scars. Those with NP had significantly higher Patient-Reported Outcomes Measurement Information System 29 (PROMIS-29) pain inference, itch, anxiety, depression, and sleep disturbance scores and were less able to partake in social roles. Multiple logistic regression revealed male sex, % total body surface area, and moderate-to-severe pain as predictors of NP at 6 months. At 12 months, % total body surface area and moderate-to-severe pain remained significant predictors, while ethnicity and employment status emerged as significant predictors at 24 months. CONCLUSIONS: This study highlights the significant prevalence of NP in burn patients and its adverse impacts on their physical, psychological, and social well-being. The findings underscore the necessity of a comprehensive approach to NP treatment, addressing both physical symptoms and psychosocial factors.

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.

Post-Burn Psychosocial Outcomes in Pediatric Minority Patients in the United States: An Observational Cohort Burn Model System Study.

Racial and ethnic minority burn patients face barriers to longitudinal psychosocial support after injury. Studies utilizing the Burn Model System (BMS) National Database report adult minority patients experience worse psychosocial outcomes in domains such as body image during burn recovery. No study to date has investigated disparities in psychosocial outcomes by racial or ethnic category in the pediatric population using the BMS database. This observational cohort study addresses this gap and examines seven psychosocial outcomes (levels of anger, sadness, depression, anxiety, fatigue, peer relationships, and pain) in pediatric burn patients. The BMS database is a national collection of burn patient outcomes from four centers in the United States. BMS outcomes collected were analyzed using multi-level, linear mixed effects regression modeling to examine associations between race/ethnicity and outcomes at discharge after index hospitalization, and 6- and 12-months post-injury. A total of 275 pediatric patients were included, of which 199 (72.3%) were Hispanic. After burn injury, of which the total body surface area was significantly associated with racial/ethnicity category (p < 0.01), minority patients more often reported higher levels of sadness, fatigue, and pain interference and lower levels of peer relationships compared to Non-Hispanic, White patients, although no significant differences existed. Black patients reported significantly increased sadness at six months (ß = 9.31, p = 0.02) compared to discharge. Following burn injury, adult minority patients report significantly worse psychosocial outcomes than non-minority patients. However, these differences are less profound in pediatric populations. Further investigation is needed to understand why this change happens as individuals become adults.

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.

PROMIS-25 Reliability and Validity Among Children Living with Burn Injury: A Burn Model System National Database Study.

This study examined the reliability and validity of the Patient Reported Outcomes Measurement System (PROMIS)-25, a profile instrument consisting of four-item fixed short forms for six health domains, in children living with burn injury. Data were provided by children participating in a multi-center longitudinal study of outcomes after burn injury. Floor and ceiling effects, unidimensionality, internal consistency, reliability, and differential item functioning (DIF) of the PROMIS-25 Profile v.2.0 were examined. Correlations with other established measures were calculated to assess concurrent validity. Children (n = 256) between the ages of 8-18 years with moderate to severe injury provided responses on PROMIS-25 domains. All PROMIS-25 domains showed high internal consistency. Substantial portions of the sample reported no symptoms (anxiety [58.2%], depressive symptoms [54.6%], fatigue [50.8%], pain [60.1%]). There was a large ceiling effect on peer relationships (46.8%) and physical function mobility (57.5%). One-factor confirmatory factor analyses supported unidimensionality for all domains. Reliability was sufficient for group mean comparisons (>0.8) across at least some trait levels for most domains except fatigue and anxiety. No DIF with respect to burn status was detected when comparing the burn sample to the PROMIS pediatric general U.S. population testing sample. These results provide evidence of reliability and validity of PROMIS-25 scores among children living with burn injury. Reliability of domains was low to moderate and would likely be improved, and ceiling effects reduced for some domains, by administering the PROMIS-37, which includes six items per domain.

Impact of community-level socioeconomic disparities on quality of life after burn injury: A Burn Model Systems Database study.

INTRODUCTION: Individual-level socioeconomic disparities impact burn-related incidence, severity and outcomes. However, the impact of community-level socioeconomic disparities on recovery after burn injury is poorly understood. As a result, we are not yet able to develop individual- and community-specific strategies to optimize recovery. Therefore, we aimed to characterize the association between community-level socioeconomic disparities and long-term, health-related quality of life after burn injury. METHODS: We queried the Burn Model System National Longitudinal Database for participants who were> 14 years with a zip code and who had completed a health-related quality of life (HRQOL) questionnaire (VR-12) 6 months after injury. BMS data were deterministically linked by zip code to the Distressed Communities Index (DCI), which combines seven census-derived metrics into a single indicator of economic well-being, education, housing and opportunity at the zip code level. Hierarchical linear models were used to estimate the association between community deprivation and HRQOL 6 months after burn injury, as measured by mental (MCS) and physical (PCS) component summary scores of the SF12/VR12. RESULTS: 342 participants met inclusion criteria. Participants were mostly male (n = 239, 69 %) and had a median age of 48 years (IQR 33-57 years). Median %TBSA was 10 (IQR 3-28). More than one-third of participants (n = 117, 34 %) lived in a community within the highest two distress quintiles. After adjusting for age, race/ethnicity, number of trips to the operating room (OR) and pre-injury PCS, neighbourhood distress was negatively associated with 6-month PCS (ß-0.05, 95 % CI [-0.09,-0.01]). Increasing age and lower pre-injury PCS were also negatively associated with 6-month PCS. There was no observed association between neighbourhood distress and 6-month MCS after adjustment for age, participant race/ethnicity, number of trips to the OR and pre-injury MCS. Higher pre-injury MCS was associated with 6-month MCS (ß0.54, 95 % CI [-0.41,0.67]). CONCLUSIONS: Community distress is associated with lower PCS at 6 months after burn injury but no association with MCS was identified. Pre-injury HRQOL is associated with both PCS and MCS after injury. Further study of the factors underlying the relationship between community distress and physical functional recovery (e.g., access to rehabilitation services, availability of adaptations) is required to identify potential interventions.

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.

Extension and Evaluation of the PROMIS Sexual Function and Satisfaction Measures for Use in Adults Living With Multiple Sclerosis.

BACKGROUND: Sexual dysfunction is a common symptom of multiple sclerosis (MS). Clinically meaningful and psychometrically sound measures of sexual function validated in people with MS are necessary to identify people with MS who experience problems with sexual function. AIM: To evaluate the Patient-Reported Outcomes Measurement Information System (PROMIS) Sexual Function and Satisfaction (SexFS) v2.0 measure in people with MS and to extend the PROMIS SexFS Brief and Full Profiles to include additional aspects of sexual function relevant to people living with MS. METHODS: A convenience sample of MS clinicians and sexually active individuals with MS ranked relevance of 26 items that listed specific factors that interfere with sexual function. Rankings were used to select items to include in the modified SexFS for Multiple Sclerosis (SexFS-MS) profiles. Sex-FS Brief and Full profiles along with the top 22 ranked interfering factor items underwent cognitive interviews (CI) to assess whether the items were understandable and meaningful. OUTCOMES: The SexFS as originally published functioned well in people with MS after minor modifications. RESULTS: Twelve MS clinicians and 26 people with MS ranked items. The 10 highest ranked questions about factors that interfere with sexual function most relevant to people with MS were added to the SexFS-MS Brief profiles and 18 to the Full profiles. Ten men and 12 women with MS participated in CIs and found most items to be clear and meaningful. However, important changes were made to the profile instructions, some response sets, and to some items to improve clarity and function. New items to assess numbness and reasons why sexually active people choose at times not to engage in sexual activity were added. CLINICAL IMPLICATIONS: Brief and Full profiles are freely available and are recommended for research and clinical practice that include people with MS. STRENGTHS & LIMITATIONS: This study is the first to provide validity evidence for the PROMIS SexFS in people living with MS. Though the PROMIS SexFS was tested in people who identify as lesbian, gay, or bisexual, only individuals who identified as heterosexual participated in this study. Results may not represent views of people with MS who identify as other sexual orientations who may have different concerns and priorities related to sexual function. CONCLUSION: This study extended the PROMIS SexFS Brief and Full profiles to create the SexFS-MS by adding items that measure most relevant issues related to sexual function in individuals living with MS. Amtmann D, Bamer AM, Salem R, et al. Extension and Evaluation of the PROMIS Sexual Function and Satisfaction Measures for Use in Adults Living With Multiple Sclerosis. J Sex Med 2022;19:719-728.

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.

Validation of PROMIS-29 domain scores among adult burn survivors: A National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System Study.

BACKGROUND: Patient-reported outcomes are important for understanding recovery after burn injury, benchmarking service delivery and measuring the impact of interventions. Patient-Reported Outcomes Measurement Information System (PROMIS)-29 domains have been validated for use among diverse populations though not among burn survivors. The purpose of this study was to examine validity and reliability of PROMIS-29 scores in this population. METHODS: The PROMIS-29 scores of physical function, anxiety, depression, fatigue, sleep disturbance, ability to participate in social roles, and pain interference were evaluated for validity and reliability in adult burn survivors. Unidimensionality, floor and ceiling effects, internal consistency, and reliability were examined. Differential item functioning was used to examine bias with respect to demographic and injury characteristics. Correlations with measures of related constructs (Community Integration Questionnaire, Satisfaction with Life Scale, Post-Traumatic Stress Checklist-Civilian, and Veteran's Rand-12) and known-group differences were examined. RESULTS: Eight hundred and seventy-six burn survivors with moderate to severe injury from 6 months to 20 years postburn provided responses on PROMIS-29 domains. Participants' ages ranged from 18 years to 93 years at time of assessment; mean years since injury was 3.4. All PROMIS domain scores showed high internal consistency (Cronbach's α = 0.87-0.97). There was a large ceiling effect on ability to participate in social roles (39.7%) and physical function (43.3%). One-factor confirmatory factor analyses supported unidimensionality (all comparative fit indices >0.95). We found no statistically significant bias (differential item functioning). Reliability was high (>0.9) across trait levels for all domains except sleep, which reached moderate reliability (>0.85). All known-group differences by demographic and clinical characteristics were in the hypothesized direction and magnitude except burn size categories. CONCLUSION: The results provide strong evidence for reliability and validity of PROMIS-29 domain scores among adult burn survivors. Reliability of the extreme scores could be increased and the ceiling effects reduced by administering PROMIS-43, which includes six items per domain, or by administering by computerized adaptive testing. LEVEL OF EVIDENCE: Diagnostic Test or Criteria, level III.

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.

Evaluation of the Psychometric Properties of the Burn Specific Health Scale-Brief: A National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System Study.

The Burn Specific Health Scale-Brief (BSHS-B) is a commonly used burn-specific health outcome measure that includes 40 items across nine subscales. The objective of this study was to use both classical and modern psychometric methods to evaluate psychometric properties of the BSHS-B. Data were collected postburn injury by a multisite federally funded project tracking long-term outcomes. We examined dimensionality, local dependence, item fit, and functioning of response categories, homogeneity, and floor and ceiling effects. Items were fit to Item Response Theory models for evaluation. A total of 653 adults with burn injury completed the BSHS-B. Factor analyses supported unidimensionality for all subscales, but not for a total score based on all 40 items. All nine of the subscales had significant ceiling effects. Six item pairs displayed local dependence suggesting redundance and 11 items did not fit the Item Response Theory models. At least 15 items have too many response options. Results identified numerous psychometric issues with the BSHS-B. A single summary score should never be used for any purpose. Psychometric properties of the scale need to be improved by removing redundant items, reducing response categories, and modifying or deleting problematic items. Additional conceptual work is needed to, at a minimum, revise the work subscale and optimally to revisit and clearly define the constructs measured by all the subscales. Additional items are needed to address ceiling effects.

Linking scores on the 4- and 5-item versions of the Satisfaction with Life Scale in people with traumatic brain, spinal cord, or burn injury: a National Institute on Disability, Independent Living, and Rehabilitation Research Model System study.

BACKGROUND: The Satisfaction with Life Scale (SWLS) is a widely used measure of subjective well-being. Recent evidence indicates the fifth item of the scale reduces the reliability of the scale and is inappropriate for use in traumatic injury populations. The purpose of this study was to develop a linking procedure between the five-item version of the SWLS and a modified four-item version, which removes the problematic item, for use in Spinal Cord (SCI), Traumatic Brain (TBI), and Burn Injury populations. METHODS: Proration (i.e. adding the mean of the four items to their total) was identified as a potential linking solution that could be easily implemented in clinical or research settings. The validity of the proration approach was evaluated by examining mean differences, cross group classification by SWLS category, score correlations, the intraclass correlation coefficient, and visual inspection of Bland-Altman plots in a large sample of SCI, TBI, and Burn Injury survivors who were participants in the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Model Systems' National Databases. RESULTS: A total of 17,897 (SCI n = 8566, TBI n = 7941, and Burn n = 1390) participants were included in this study. SWLS scores ranged from 5 to 35, and the average score difference between directly derived and prorated scores was 0.39 points. A large majority of the sample (93%) had score differences of < 4 points (i.e. approximately 0.5 SD). The correlation between the prorated and directly derived scores was very high (r = 0.97) and the ICC value indicated excellent reliability (ICC = 0.97). CONCLUSIONS: This study provides a valid scoring approach for researchers or clinicians who don't want to lose continuity with previously collected data but prefer to switch to the modified four-item version of the SWLS. Clear guidance is provided for traumatic injury researchers or clinicians on how to implement the proration scoring approach.

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.

Agreement between proxy- and self-report scores on PROMIS health-related quality of life domains in pediatric burn survivors: a National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System Study.

PURPOSE: To examine agreement between pediatric burn survivor self- and caregiver proxy-report on multiple PROMIS domains and examine factors associated with differences between self- and proxy-reports. METHODS: Children 8-17 years of age and their caregivers completed PROMIS measures (physical function, depression, peer relationships, pain interference, and anger) between 6 months and 15 years after injury. Self- and proxy-report scores were compared using Wilcoxon sign rank test, Cohen's effect size, and intraclass correlation coefficients (ICC) and by agreement across severity of symptoms based on recommended cutoffs. Ordinary least squares regression analyses examined child- (self-report score, age, gender, and ethnicity) and proxy-related (relationship to child) factors associated with score differences. RESULTS: Two hundred and seventy four child-caregiver pairs completed the PROMIS measures. Mean child age was 13.0 (SD:3) years. Caregivers reported significantly worse scores than the child on physical function, pain, and anger (all p ≤ 0.01). The effect sizes were small across all domains except physical function. Similarly, ICCs were all of moderate agreement. The percentage of dyads in agreement by severity groups was high with only 5%-9% of pairs discordant. Only higher self-report score was associated (all p < 0.05) with greater differences across all domains in regression analyses. CONCLUSIONS: This study supports the use of pediatric proxy PROMIS depression, physical function, peer relationships, pain interference, and anger scales in pediatric burn patients. Although agreement was moderate to good, assessing proxy-report alone as a surrogate should only be considered when self-report is not possible or practical. Caregivers typically report slightly worse severity of symptoms than children across all domains.