Trajectory Curves for Purposes of Benchmarking and Predicting Clinical Outcomes: A Scoping Review.

Trajectory curves are valuable tools to benchmark patient health status and predict future outcomes. A longitudinal study is underway to examine social participation after burn injury using the Life Impact Burn Recovery Evaluation (LIBRE) Profile with the goal of developing trajectory curves for specific domains that focus on social reintegration. We conducted a scoping review to inform and understand trajectory curves applied in clinical settings to compare outcomes for an individual to a matched cohort of comparable patients or predicted expected outcomes over time. This scoping review utilized a PubMed search from January 2014 to August 2019 for the following terms: "trajectory curves" or "trajectory models" and "clinic" or "clinical." Only articles that specifically referenced longitudinal and clinical research designs were included in the scoping review. Articles were assessed using standard scoping review methods and categorized based on clinical application of trajectory curves for either benchmarking or prediction. The initial literature review identified 141 manuscripts and 34 met initial inclusion criteria. The reviewed articles support the clinical use of trajectory curves. Findings provide insight into several key determinants involved with the successful development and implementation of trajectory curves in clinical settings. These findings will inform efforts to use the LIBRE Profile to model social participation recovery and assist in developing effective strategies using trajectory curves to promote social reintegration after burn injury.

Interpreting Life Impact Burn Recovery Evaluation Profile Scores for Use by Clinicians, Burn Survivors, and Researchers.

The Life Impact Burn Recovery Evaluation (LIBRE) Profile is a patient-reported outcome measure developed to assess social participation in adult burn survivors. This study identified numeric score cut-points that define different levels of social participation ability and described each level. An expert panel identified numeric score cut-points that distinguish different levels of social participation for the six LIBRE Profile domains. Methods employed an iterative, modified-Delphi approach, and bookmarking to review calibrated item banks. Analyses (using calibration sample data and repeated in a validation sample) examined means, SDs, and sample distributions for each level. Analyses of variance examined score differences between levels. The panel developed descriptions for each established level. Initial cut-points resulted in four levels for five domains (Social Activities, Social Interactions, Romantic Relationships, Sexual Relationships, and Work & Employment) and five levels for the sixth domain (Relationships with Family & Friends). Comparisons demonstrated significant differences between level mean scores for all domains (P < .05) except Relationships with Family & Friends. Based on follow-up surveys, Relationships with Family & Friends score cut-points were adjusted to identify four levels with significant score differences between all levels. Panelists reached consensus for level descriptions. Score cut-points and descriptions identify different levels of social participation, providing a relevant context for interpreting LIBRE Profile numeric scores. LIBRE Profile Social Participation levels will help clinicians and persons with burn injury interpret LIBRE Profile numeric scores and promote use of this important new assessment.

Sexual activity and romantic relationships after burn injury: A Life Impact Burn Recovery Evaluation (LIBRE) study.

BACKGROUND: Engaging in healthy sexual activity and romantic relationships are important but often neglected areas of post-burn rehabilitation. The degree to which persons with burn injuries engage in sexual activity and romantic relationships is not well understood. This study examined demographic and clinical characteristics predicting engagement in sexual activity and romantic relationships in a sample of adult burn survivors compared to a general United States sample. METHODS: Data for the adult burn survivor sample were from 601 adult burn survivors who participated in field-testing for the calibration of the Life Impact Burn Recovery Evaluation (LIBRE) Profile, a burn-specific instrument assessing social participation on six scales including sexual activity and romantic relationships. Comparison data were obtained from a general population sample of 2000 adults through sample matching. Demographic predictors of sexual activity and romantic relationship status were examined in each sample using modified Poisson regression analyses. Clinical predictors of engaging in sexual activity and romantic relationships were also examined in the LIBRE sample. RESULTS: Participants were slightly more likely to report being sexually active in the adult burn survivor sample than in the general sample (65% vs. 57%, p < 0.01). There was not a significant difference in romantic relationship status between the two samples (64% vs. 62%, p = 0.31). In multivariable regression analyses, men in both samples were more likely to report being in a sexual relationship (RR in LIBRE sample = 1.23, 95% CI 1.08-1.39; RR in general sample = 1.10, 95% CI 1.02-1.18). Participants in both samples who were not working were less likely to report being sexually active or in a romantic relationship (RRs ranging from 0.73 to 0.83, p < 0.05 for all estimates). In the adult burn survivor sample, respondents with hand burns were more likely to report being sexually active and in a romantic relationship (RR = 1.16, 95% CI 1.01-1.33). Time since burn injury, burn size, and burns to other critical areas were not significantly associated with either outcome in adjusted analyses. CONCLUSIONS: The likelihood of engaging in sexual activity and romantic relationships is similar among adult burn survivors and the comparison group representing a general United States sample of adults. Further research addressing sexual activity and romantic relationships after burn injuries will help to foster better patient-clinician dialogue, pinpoint barriers, design interventions, and allocate appropriate resources.

Nonfatal horse-related injuries treated in emergency departments in the United States, 1990-2017.

BACKGROUND: Horse-related injuries can cause severe morbidity and mortality. The objective of this study is to investigate the epidemiological features of horse-related injuries treated in emergency departments (EDs) in the United States. METHODS: A retrospective analysis of horse-related injuries from 1990 through 2017 was conducted utilizing the National Electronic Injury Surveillance System (NEISS). Cases were identified using the NEISS code 1239 (Horseback Riding: Activity, Apparel, or Equipment). Analyses performed included calculation of national injury estimates, relative risks (RRs) with 95% confidence intervals (CIs), and linear regression. RESULTS: From 1990 through 2017, an estimated 1,836,536 (95% CI: 1,494,788-2,178,284) individuals presented to United States EDs with horse-related injuries. The annual injury rate decreased by 30.8% from 1990 to 1996, increased by 33.0% from 1996 to 2000, and then decreased by 46.0% from 2000 to 2017. Among older adults >60 years of age, the annual injury rate increased by 139.6% during the study period. The number of concussion and closed head injury diagnoses increased by 337.2% from 1990 to 2009. The most common mounted mechanism of injury was a fall or being thrown (73.9%), while the most common unmounted mechanism was being kicked (42.1%). Mounted injuries were more likely to lead to hospitalization than unmounted injuries (RR, 2.10, 95% CI: 1.59-2.77). CONCLUSIONS: Despite the recent decline in horse-related injuries, these injuries are still common. Clinicians should be aware of the spectrum of ED presentations of horse-related injuries. Prevention efforts focused on older adults and concussions and closed head injuries warrant special attention.

Long-Term Social Reintegration Outcomes for Burn Survivors With and Without Peer Support Attendance: A Life Impact Burn Recovery Evaluation (LIBRE) Study.

OBJECTIVE: To examine differences in long-term social reintegration outcomes for burn survivors with and without peer support attendance. DESIGN: Cross-sectional survey. SETTING: Community-dwelling burn survivors. PARTICIPANTS: Burn survivors (N=601) aged ≥18 years with injuries to ≥5% total body surface area (TBSA) or burns to critical areas (hands, feet, face, or genitals). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The Life Impact Burn Recovery Evaluation Profile was used to examine the following previously validated 6 scale scores of social participation: Family and Friends, Social Interactions, Social Activities, Work and Employment, Romantic Relationships, and Sexual Relationships. RESULTS: Burn support group attendance was reported by 330 (55%) of 596 respondents who responded to this item. Attendees had larger burn size (43.4%±23.6% vs 36.8%±23.4% TBSA burned, P<.01) and were more likely to be >10 years from injury (50% vs 42.5%, P<.01). Survivors who attended at least 1 support group scored significantly higher on 3 of the scales: Social Interactions (P=.01), Social Activities (P=.04), and Work and Employment (P=.05). In adjusted analyses, peer support attendance was associated with increased scores on the Social Interactions scale, increasing scores by 17% of an SD (95% confidence interval, 1%-33%; P=.04). CONCLUSIONS: Burn survivors who reported peer support attendance had better social interaction scores than those who did not. This is the first reported association between peer support group attendance and improvements in community reintegration in burn survivors. This cross-sectional study prompts further exploration into the potential benefits of peer support groups on burn recovery with future intervention studies.

Impact of Work-Related Burn Injury on Social Reintegration Outcomes: A Life Impact Burn Recovery Evaluation (LIBRE) Study.

OBJECTIVE: To examine differences in long-term social reintegration outcomes for burn survivors with and without work-related injuries. DESIGN: Cross-sectional survey. SETTING: Community-dwelling burn survivors. PARTICIPANTS: Burn survivors (N=601) aged ≥18 years with injuries to ≥5% total body surface area or burns to critical areas (hands, feet, face, or genitals). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The Life Impact Burn Recovery Evaluation Profile was used to examine the following previously validated 6 scale scores of social participation: Family and Friends, Social Interactions, Social Activities, Work and Employment, Romantic Relationships, and Sexual Relationships. RESULTS: Older participants, those who were married, and men were more likely to be burned at work (P<.01). Burn survivors who were injured at work scored significantly lower on the Work and Employment scale score after adjusting for demographic and clinical characteristics (P=.01). All other domain scale scores demonstrated no significant differences between groups. Individuals with work-related injuries scored significantly worse on 6 of the 19 items within the Work and Employment scale (P<.05). These individuals were more likely to report that they were afraid to go to work and felt limited in their ability to perform at work. CONCLUSIONS: Burn survivors with work-related injuries report worse work reintegration outcomes than those without work-related injuries. Identification of those at higher risk for work reintegration challenges after burn injury may enable survivors, providers, employers, and insurers to better use appropriate resources to promote and target optimal employment outcomes.

The Relationship of Level of Education to Social Reintegration after Burn Injury: A LIBRE Study.

Social and emotional recovery from burn injury is a complex process impacted by both clinical and social factors. Because level of education (LOE) has been correlated to overall health, health outcomes, and life expectancy, we questioned whether LOE might be associated with successful social recovery after burn injury. The Life Impact Burn Recovery Evaluation (LIBRE) data set served as a novel tool to explore this question. The LIBRE project is a collaborative effort designed to provide a clinical yardstick for social reintegration among burn survivors. After institutional review board approval, 601 burn survivor respondents, aged 18 or over with >5% TBSA burn were surveyed and a six-scale, 126-item LIBRE Profile was derived from their responses. LOE was collapsed into four categories ranging from less than high school equivalency certificate to graduate degree. Impact of burn injury on subsequent LOE was examined by splitting the sample into those burned at age 30 years or less and those burned at greater than 30 years of age. Regression models were run to estimate associations between education and scale scores with adjustment for age at injury, sex, marital status, work status, TBSA, and time since burn. Regression models were run on the entire cohort and then stratified by age at burn injury (≤30 vs >30). Among all subjects, we found an association between LOE and social recovery as measured by LIBRE scale scores. This association was contributed entirely from the cohort burned at age 30 or less: for those burned at greater than age 30, there was no association between LOE and social recovery. Of particular interest, the distribution of LOE among those burned at ≤ 30 was very similar to LOE distribution in both millennials and in the U.S. population at large. LOE appears to be associated with social recovery for those burned at younger ages but not for those burned at over age 30. More importantly, burn injury during schooling may have no impact on a survivor's educational trajectory since distribution of LOE in our ≤30 cohort mirrors that of the general population. LOE and age at burn injury may provide a quick screen for survivors at risk of difficult social reintegration, allowing providers to target those at risk with additional peer support and counseling.

Burn survivors injured as children exhibit resilience in long-term community integration outcomes: A life impact burn recovery evaluation (LIBRE) study.

INTRODUCTION: There is limited understanding of how burn injuries at different ages are associated with normal growth and development as well as the burn recovery process. This study provides new useful insights by comparing social participation outcomes among burn survivors injured in childhood compared with injuries sustained in middle age, and older adulthood. METHODS: Items from the development of the LIBRE profile were administered to 601 adult burn survivors with ≥5% TBSA burned or burns to critical areas (hands, feet, face, or genitals). Each item was answered on a 5-point Likert scale with higher scores denoting better outcomes. Mean scores for the 6 LIBRE profile scales (sexual relationships, family and friends, social interactions, social activities, work and employment, and romantic relationships) were compared between those burned as children (<18years) and those burned as adults (≥18years). Regression analyses were used to assess differences between groups with adjustment for demographic and clinical characteristics. RESULTS: Of the 597 burn survivors having complete data on age at injury, 165 (27.6%) sustained burn injuries as a child. Those burned as children were more frequently female than those burned as adults (57% vs 47%) and were also more frequently white non-Hispanic (89% vs 77%). Marital status and education level were similar in the two groups. Those who were burned as children had slightly higher scores on the social activities, work and employment and romantic relationships scales. However, these differences did not persist in adjusted regression analyses. CONCLUSIONS: Burn survivors who sustained injuries as a child fared at least as well as those burned as adults in a broad range of long-term social participation outcomes. The impact on long-term social participation outcomes of burn survivors was not significantly different between individuals with burns sustained during important developmental stages at young ages and those injured later in life.

Social Interactions and Social Activities After Burn Injury: A Life Impact Burn Recovery Evaluation (LIBRE) Study.

Social interactions and activities are key components of social recovery following burn injuries. The objective of this study is to determine the predictors of these areas of social recovery. This study provides a secondary analysis of a cross-sectional survey of adult burn survivors. The Life Impact Burn Recovery Evaluation-192 was administered to 601 burn survivors for the field-testing of the Life Impact Burn Recovery Evaluation Profile. Survivors aged 18 years and older with injuries ≥5% total BSA or burns to critical areas (hands, feet, face, or genitals) were eligible to participate. Multivariate linear regression analyses were used to determine predictors of the Social Activities and Social Interactions scale scores. A total of 599 people completed the Social Interactions and Social Activities scales. Of these, 77% identified as White Non-Hispanic, 55% were female, 55% were unmarried, and 80% had burns to critical areas. Participants had a mean age of 45 years, a mean time since burn injury of 15 years, and a mean burn size of 41% total BSA. Younger age (P < .01) and being married/living with a significant other (P ≤ .01) were associated with higher Social Activities and Social Interactions scale scores. Individual item responses reveal that survivors had lower scores on items related to participating in outdoor activities (30.4%) or feeling uncomfortable with their appearance (32.4% report dressing to avoid stares). Social interactions and activities are long-term challenges for burn survivors. It is important for clinicians to identify patients who may struggle with social recovery in order to focus on future community-based interventions.

The Associations of Gender With Social Participation of Burn Survivors: A Life Impact Burn Recovery Evaluation Profile Study.

Burn injury can be debilitating and affect survivors' quality of life in a profound fashion. Burn injury may also lead to serious psychosocial challenges that have not been adequately studied and addressed. Specifically, there has been limited research into the associations of burn injury on community reintegration based on gender. This work analyzed data from 601 burn survivors who completed field testing of a new measure of social participation for burn survivors, the Life Impact Burn Recovery Evaluation (LIBRE) Profile. Differences in item responses between men and women were examined. Scores on the six LIBRE Profile scales were then compared between men and women using analysis of variance and adjusted linear multivariate regression modeling. Overall, men scored significantly better than women on four of the six LIBRE Profile scales: Sexual Relationships, Social Interactions, Work & Employment, and Romantic Relationships. Differences were not substantially reduced after adjustment for demographic characteristics and burn size. Men scored better than women in most of the areas measured by the LIBRE Profile. These gender differences are potentially important for managing burn patients during the post-injury recovery period.

Developing Item Response Theory-Based Short Forms to Measure the Social Impact of Burn Injuries.

OBJECTIVE: To develop self-reported short forms for the Life Impact Burn Recovery Evaluation (LIBRE) Profile. DESIGN: Short forms based on the item parameters of discrimination and average difficulty. SETTING: A support network for burn survivors, peer support networks, social media, and mailings. PARTICIPANTS: Burn survivors (N=601) older than 18 years. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The LIBRE Profile. RESULTS: Ten-item short forms were developed to cover the 6 LIBRE Profile scales: Relationships with Family & Friends, Social Interactions, Social Activities, Work & Employment, Romantic Relationships, and Sexual Relationships. Ceiling effects were ≤15% for all scales; floor effects were <1% for all scales. The marginal reliability of the short forms ranged from .85 to .89. CONCLUSIONS: The LIBRE Profile-Short Forms demonstrated credible psychometric properties. The short form version provides a viable alternative to administering the LIBRE Profile when resources do not allow computer or Internet access. The full item bank, computerized adaptive test, and short forms are all scored along the same metric, and therefore scores are comparable regardless of the mode of administration.

Aftercare, Survivorship, and Peer Support.

Burn recovery includes addressing any emotional, psychological, and social needs of the survivor and family. Providing support and resources is essential for a smooth transition from the acute phase of injury to rehabilitation and successful social and community reintegration. Priority psychosocial target areas are developing social skills, addressing body image concerns, and providing peer support. Peer support provides a unique perspective of shared experience that can instill hope and assist coping efforts of survivors and family. Health care professionals can be instrumental in connecting survivors to community support organizations. Discussed are considerations for aftercare planning and peer support's role.

Development of the life impact burn recovery evaluation (LIBRE) profile: assessing burn survivors' social participation.

PURPOSE: Measuring the impact burn injuries have on social participation is integral to understanding and improving survivors' quality of life, yet there are no existing instruments that comprehensively measure the social participation of burn survivors. This project aimed to develop the Life Impact Burn Recovery Evaluation Profile (LIBRE), a patient-reported multidimensional assessment for understanding the social participation after burn injuries. METHODS: 192 questions representing multiple social participation areas were administered to a convenience sample of 601 burn survivors. Exploratory factor analysis and confirmatory factor analysis (CFA) were used to identify the underlying structure of the data. Using item response theory methods, a Graded Response Model was applied for each identified sub-domain. The resultant multidimensional LIBRE Profile can be administered via Computerized Adaptive Testing (CAT) or fixed short forms. RESULTS: The study sample included 54.7% women with a mean age of 44.6 (SD 15.9) years. The average time since burn injury was 15.4 years (0-74 years) and the average total body surface area burned was 40% (1-97%). The CFA indicated acceptable fit statistics (CFI range 0.913-0.977, TLI range 0.904-0.974, RMSEA range 0.06-0.096). The six unidimensional scales were named: relationships with family and friends, social interactions, social activities, work and employment, romantic relationships, and sexual relationships. The marginal reliability of the full item bank and CATs ranged from 0.84 to 0.93, with ceiling effects less than 15% for all scales. CONCLUSIONS: The LIBRE Profile is a promising new measure of social participation following a burn injury that enables burn survivors and their care providers to measure social participation.

Measuring the Social Impact of Burns on Survivors.

Many burn survivors experience social challenges throughout their recovery. Measuring the social impact of a burn injury is important to identify opportunities for interventions. The aim of this study is to develop a pool of items addressing the social impact of burn injuries in adults to create a self-reported computerized adaptive test based on item response theory. The authors conducted a comprehensive literature review to identify preexisting items in other self-reported measures and used data from focus groups to create new items. The authors classified items using a guiding conceptual framework on social participation. The authors conducted cognitive interviews with burn survivors to assess clarity and interpretation of each item. The authors evaluated an initial pool of 276 items with burn survivors and reduced this to 192 items after cognitive evaluation by experts and burn survivors. The items represent seven domains from the guiding conceptual model: work, recreation and leisure, relating to strangers, romantic, sexual, family, and informal relationships. Additional item content that crossed domains included using self-comfort and others' comfort with clothing, telling one's story, and sense of purpose. This study was designed to develop a large item pool based on a strong conceptual framework using grounded theory analysis with focus groups of burn survivors and their caregivers. The 192 items represent 7 domains and reflect the unique experience of burn survivors within these important areas of social participation. This work will lead to developing the Life Impact Burn Recovery Evaluation profile, a self-reported outcome measure.

Development of a Conceptual Framework to Measure the Social Impact of Burns.

Measuring community reintegration following burn injury is important to assess the efficacy of therapies designed to optimize recovery. This project aims to develop and validate a conceptual framework for understanding the social impact of burn injuries in adults. The framework is critical for developing the item banks used for a computerized adaptive test. We performed a comprehensive literature review and consulted with clinical experts and burn survivors about social life areas impacted by burn injury. Focus groups with burn survivors and clinicians were conducted to inform and validate the framework. Transcripts were coded using grounded theory methodology. The World Health Organization's International Classification of Functioning, Disability and Health, was chosen to ground the content model. The primary construct identified was social participation, which contains two concepts: societal role and personal relationships. The subdomains chosen for item development were work, recreation and leisure, relating with strangers, and romantic, sexual, family, and informal relationships. Qualitative results strongly suggest that the conceptual model fits the constructs for societal role and personal relationships with the respective subdomains. This conceptual framework has guided the implementation of a large-scale calibration study currently underway which will lead to a computerized adaptive test for monitoring the social impacts of burn injuries during recovery.