Life Impact Burn Recovery Evaluation Research Articles

Moderation Effects of Daily Behavior on Associations between Symptoms and Social Participation Outcomes after Burn Injury: A 6-month Digital Phenotyping Study

To examine the moderation effects of daily behavior on the associations between symptoms and social participation outcomes after burn injury DESIGN: A 6-month prospective cohort study SETTING: Community PARTICIPANTS: 24 adult burn survivors INTERVENTIONS: Not applicable MAIN OUTCOME MEASURES: Symptoms and social participation outcomes were assessed weekly using smartphone surveys, including symptoms of pain (Patient-Reported Outcomes Measurement Information System (PROMIS) Pain Intensity and Pain Interference), anxiety (PROMIS Anxiety), and depression (Patient Health Questionnaire (PHQ-8)), as well as outcomes of social interactions and social activities (Life Impact Burn Recovery Evaluation (LIBRE) Social Interactions and Social Activities). Daily behaviors were automatically recorded by a smartphone application and smartphone logs, including physical activity (steps, travel miles, and activity minutes), sleep (sleep hours), and social contact (number of phone call and message contacts). Multilevel models controlling for demographic and burn injury variables examined the associations between symptoms and social participation outcomes, and the moderation effects of daily behaviors. Lower (worse) LIBRE Social Interactions and LIBRE Social Activities scores were significantly associated with higher (worse) PROMIS Pain Intensity, PROMIS Pain Interference, PROMIS Anxiety, and PHQ-8 scores (p<0.05). Additionally, daily steps and activity minutes were associated with LIBRE Social Interactions and LIBRE Social Activities (p<0.05), and significantly moderated the association between PROMIS Anxiety and LIBRE Social Activities (p<0.001). Social participation outcomes are associated with pain, anxiety, and depression symptoms after burn injury, and are buffered by daily physical activity. Future interventions studies should examine physical activity promotion on improving social recovery after burns.

43 The Development of the Preschool Life Impact Burn Recovery Evaluation Short Forms

43 The Development of the Preschool Life Impact Burn Recovery Evaluation Short Forms

127 The Teen-Aged Life Impact Burn Recovery Evaluation Profile: Initial Development

127 The Teen-Aged Life Impact Burn Recovery Evaluation Profile: Initial Development

Development of the Preschool Life Impact Burn Recovery Evaluation (PS-LIBRE1-5) Profile.

Physical, social, and psychological outcomes have been identified as relevant to the rehabilitation process of children with burn injuries. Existing legacy measures are limited in item content and only cover a few constructs. Condition-specific outcomes are highly relevant to gauge early growth and development. Computerized adaptive tests (CATs) leveraging advanced psychometric technologies minimize respondent burden. This project developed PS-LIBRE1-5 Profile CAT (Preschool Life Impact Burn Recovery Evaluation) to measure relevant postburn outcomes in children aged one to five. Responses to the field-tested PS-LIBRE1-5 Profile (188 items) were measured on a scale of frequency or ability. Scores were coded from 0 to 4 where higher scores reflected better functioning. Factor analysis identified the items retained in the final item bank of each scale. CAT simulations were conducted to estimate the mean score of each scale. The simulated CAT score and full item bank scores were compared based upon the score range, ceiling and floor effects, and marginal reliabilities. The child mean age was 3.0 ± 1.5 years (n = 500). Average burn size and time since burn injury were 4.2% TBSA and 1.1 years, respectively. Psychometric analysis resulted in eight scales: Physical, Communication and Language, Emotional Wellbeing, Mood, Anxiety, Peer Acceptance, Play, and Peer Relations. Ceiling effects were acceptable at <13% for all scales. Marginal reliabilities of the CATs were credible. The PS-LIBRE1-5 Profile CAT contains 111 items, and is a comprehensive measure that captures physical, communication and language, psychological, and social functioning of preschool burn survivors.

Predictors at 6 and 12 Months for Social Participation Outcome at 24 Months in the Adult Burn Injury Population: A Burn Model System National Database Study

ObjectiveTo identify clinical factors (physical and psychological symptoms and post-traumatic growth) that predict social participation outcome at 24-month after burn injury. DesignA prospective cohort study based on Burn Model System National Database. SettingBurn Model System centers. Participants181 adult participants less than 2 years after burn injury (N=181). InterventionsNot applicable. Main Outcome MeasuresDemographic and injury variables were collected at discharge. Predictor variables were assessed at 6 and 12 months: Post-Traumatic Growth Inventory Short Form (PTGI-SF), Post-Traumatic Stress Disorder Checklist Civilian Version (PCL-C), Patient-Reported Outcomes Measurement Information System (PROMIS-29) Depression, Anxiety, Sleep Disturbance, Fatigue, and Pain Interference short forms, and self-reported Heat Intolerance. Social participation was measured at 24 months using the Life Impact Burn Recovery Evaluation (LIBRE) Social Interactions and Social Activities short forms. ResultsLinear and multivariable regression models were used to examine predictor variables for social participation outcomes, controlling for demographic and injury variables. For LIBRE Social Interactions, significant predictors included the PCL-C total score at 6 months (β=-0.27, P<.001) and 12 months (β=-0.39, P<.001), and PROMIS-29 Pain Interference at 6 months (β=-0.20, P<.01). For LIBRE Social Activities, significant predictors consisted of the PROMIS-29 Depression at 6 months (β=-0.37, P<.001) and 12 months (β=-0.37, P<.001), PROMIS-29 Pain Interference at 6 months (β=-0.40, P<.001) and 12 months (β=-0.37, P<.001), and Heat Intolerance at 12 months (β=-4.55, P<.01). ConclusionsPost-traumatic stress and pain predicted social interactions outcomes, while depression, pain and heat intolerance predicted social activities outcomes in people with burn injury.

112 Computer Adaptive Test Development of Preschool Life Impact Burn Recovery Evaluation

Abstract Introduction Measuring physical, psychological, and social outcomes following childhood burn injury is important to understand the impact of the burn. Condition-specific outcomes are highly relevant in assessments for purposes of gauging early growth and development through parent-reported outcome measures (PROMs). Item content in existing PROMs for preschool children is limited and often covers only one construct. Computer adaptive tests (CATs) with advanced psychometric artificial intelligence technologies minimizes respondent burden and enables the creation of a comprehensive condition-specific instrument. This project developed a parent-reported CAT (Preschool1-5 Life Impact Burn Recovery Evaluation (PS-LIBRE1-5) Profile) to measure relevant outcomes after burn injuries in children aged one to under six years. Methods Responses to the field-tested PS-LIBRE1-5 Profile (188 items) were measured on a scale of frequency or ability levels. Scores were coded from 0 to 4 where higher scores reflected better functioning. Factor analysis and Partial Credit Models identified the items retained in the final item bank of each scale. Differential item functioning (DIF) determined if subgroups of burn survivors at the same ability level demonstrated different probabilities of responses. CAT simulations were conducted to estimate the mean score of each scale. The simulated CAT score and full item bank scores were compared based upon the score range, ceiling and floor effects, and marginal reliabilities. Results The child mean age was 3.0 + 1.5 years (n = 498), with primarily mothers (83%) responding. Average burn size and time since burn injury were 4.2% TBSA and 1.1 years, respectively. Analysis resulted in eight scales: Physical (27 items), Communication and language (20 items), Emotional wellbeing (16 items), Mood (11 items), Anxiety (13 items), Peer acceptance (7 items), Play (8 items), and Peer relations (9 items). Severe DIF by ‘age at survey completion’ was shown in 13 items. Ceiling effects were acceptable at &amp;lt; 14%. A CAT was created with the exception of four of the scales (Peer acceptance, Play, Mood, and Anxiety) due to limited item content in these scales’ full item bank. Marginal reliabilities were credible (0.83 to 0.90). CAT simulations revealed that administering the CAT would save the respondent about 14 minutes compared to administering the full item bank. Conclusions Final scales of the PS-LIBRE1-5 Profile contain 111 items and is a comprehensive measure that captures physical, communication and language, psychological, and social functioning of preschool burn survivors in the community. Applicability of Research to Practice This work lays the groundwork for developing a set of age-based CATs, adding to prior adult LIBRE project. The CAT aims to detect the progress of a child during burn recovery for use in clinical practice.

84 The Association between Family Relations and School Outcomes in School-Aged Children 5-12 years old

Abstract Introduction School-aged children between the ages of 5 and 12 years face new environments and experiences as they transition through grade school. They are still developing and learning as they engage within their home and carry these experiences into their school environment. This study is an assessment of the association between family relations and school outcomes in children 5 to 12 years of age as measured by the field-tested SA-LIBRE5-12 (School-Aged Life Impact Burn Recovery Evaluation), a new parent-reported outcome measure. Methods Within the social and family functioning domain of the SA-LIBRE5-12, 10 family relations and 13 school items were scored on a scale from 0 (Never) to 4 (Always). Scores were re-coded so that higher scores denote better functioning. An exploratory factor analysis (EFA) was conducted to confirm model fit. A regression model assessed the relationship between the school and family factors, controlling for demographic and clinical characteristics (child sex, race, ethnicity, age at survey completion, burn size, burns to critical areas, and pain severity). Results A total of 356 parents completed these items from the SA-LIBRE5-12. EFA resulted in four sub domains of family engagement, family stress impact, school success, and school difficulties. A univariate analysis of the demographic characteristics showed that the child being female (p=0.008) and non-white (p=0.0216) had a better mean score in school success (3.33 vs. 3.19 + 0.78 (SD) and 3.38 vs. 3.21 + 0.75 (SD), respectively). In addition, children with a burn size &amp;lt; 1% had better school difficulties score (3.76 vs 3.61 + 0.38, p=0.0018). Regression analysis showed positive correlations between family engagement and school difficulties (r=0.26, p&amp;lt; .0001), family engagement and school success (r = 0.56, p&amp;lt; .0001), family stress impact and school success (r=0.21, p&amp;lt; .0001) and family stress impact and school difficulties (r=0.49, p&amp;lt; .0001). Conclusions This study indicates that a cohesive family relationship and home life may promote productive school outcomes in children between the ages of 5 and 12 based on parent reported outcomes. Applicability of Research to Practice This research will provide burn care providers, parents, and teachers with greater insight into the relationship between a child’s current family relations and their success in school. Results will guide caregivers in fostering a productive and healthy family environment.

111 Predictors of Social Participation Outcomes at Two Years after Burn Injury

Abstract Introduction People with burn injury often experience long-term social participation challenges. A previous study explored demographic and injury variables predicting social participation outcomes after burn injury. This study aims to further examine post-traumatic growth, and physical and psychological symptoms as predictors of social participation. Methods This is a multi-center Burn Model System (BMS) study with a prospective cohort design. Adult BMS Database participants from July 2018 to April 2022 were included. Predictors were measured at 12- and 24-month after injury including Post-Traumatic Growth Inventory Short Form (PTGI-SF), Post-Traumatic Stress Disorder Checklist Civilian Version (PCL-C), Patient-Reported Outcomes Measurement Information System (PROMIS-29) Depression, Anxiety, Fatigue, Sleep Disturbance, Pain Interference and Heat Intolerance. Social participation outcomes were measured with Life Impact Burn Recovery Evaluation (LIBRE) Social Interactions and Social Activities at 24-month after injury. Multivariable regression analyses were conducted to assess the association between predictors and outcomes. Results A total of 158 burn survivors were included with an average age of 47 years and a mean burn size of 19.5% total body surface area. Significant predictors included PCL-C and PROMIS-29 Depression for LIBRE Social Interactions, and Heat Intolerance, PROMIS-29 Pain Interference and Depression, and PCL-C for LIBRE Social Activities. See Table 1 for details of regression results. Conclusions Overall, self-reported post-traumatic stress and depression are associated with limited social interactions while heat intolerance, pain interference, depression, and post-traumatic stress are related to fewer social activities. Applicability of Research to Practice This study improves our understanding of the multiple and modifiable factors which influence social participation after burn injury.

115 The Association between Burn Characteristics and Body Image in School-Aged Children years 5 to 12

Abstract Introduction Children ages 5 to 12 are in pivotal stages of psychological development as they become more self-aware. Body image can be a formation of both internal experiences and influences from the surrounding environment. This perceived image adapts during this age group and can be negatively impacted by the changes in physical appearance due to the burn injury. Previous research indicates older age and the presence of larger, visible burns can impact body image and self-esteem in the present and long-term. This study assessed the association between burn characteristics and the child’s ability to maintain positive body image in this age group using a new parent-reported instrument for assessment of child outcomes after burn injury. Methods Preliminary data was obtained from the School-Aged Life Impact Burn Recovery Evaluation (LIBRE)5-12 study, which is currently in stages of field-testing. Classic test theory methods were used to assess body image items (n = 13) from the Psychological domain. Each item was scored on a 5-point Likert scale ranging from 0 (never) to 4 (always). Data was recoded for selected items such that higher scores denote better functioning. Multivariate linear regression analyses measured the association between burn injury characteristics and body image (controlling for sex, race and ethnicity, burn injury to critical areas, total body surface area burned (TBSA), and age at survey completion). Mean body image score was calculated. Results Data was obtained from 356 surveys with completed body image items from parents of children with burns. The mean age at survey completion was 8.6 + 2.4 years and mean total body surface area burned (TBSA) was 9.2 + 13.9 with 55% male and 66% white. Items from body image subdomain were identified as a unidimensional scale (α = 0.91, item-total correlations &amp;gt;0.4, ratio of the 1st and 2nd eigenvalues = 4.98). The mean body image score was 3.5 + 0.6. The presence of a foot burn (p = 0.0099), genitalia burn (p = 0.0449) and TBSA &amp;gt;1% (p = 0.0013) resulted in a lower body image score (3.3 + 0.6, 3.1 + 0.8, and 3.4 + 0.7, respectively). In the regression model, age at survey completion was also associated with decreased body image score (β = 0.074, p &amp;lt; 0.0001). Conclusions Parents reported older school-aged burn survivors often had difficulty with body image. Presence of larger burn size and injury to critical areas also worsened body image. Applicability of Research to Practice Burn-care providers and family members can utilize body image score to understand the burn survivor’s current body image satisfaction and assist in fostering positive body image after burn injury through assessment and early intervention.

116 Relationship between Smartphone-tracked Physical Activities and Psychosocial Outcomes for Burn Survivors Living in the Community

Abstract Introduction Following burn survivors in the community is critical to understand their problems and needs. Physical activities automatically recorded by smartphones have shown to be a convenient and burdenless method for post-discharge assessment. However, it is unclear if physical activities are associated with burn survivors’ physical and psychosocial outcomes. This study aims to examine the relationship between smartphone-tracked physical activities and scale-based outcomes. Methods Adult burn survivors living in the community were included in this study. A mobile application was downloaded to participants’ smartphones and automatically recorded daily number of steps, travel miles and activity minutes. Participants received weekly surveys assessing pain (Patient-Reported Outcomes Measurement Information System (PROMIS) Pain Intensity and Interference), depression (Patient Health Questionnaire (PHQ-8)), anxiety (PROMIS Anxiety) and social participation (Life Impact Burn Recovery Evaluation (LIBRE) Social Interactions and Social Activities). Correlation coefficients between physical activities and survey results were examined and interpreted as “very weak” (|r|≤0.19), “weak” (0.20≤|r|≤0.39), “moderate” (0.40≤|r|≤0.59), “strong” (0.60≤|r|≤0.79), and “very strong” (0.80≤|r|≤1.00). Results There were 24 burn survivors with an average of 24 years after injury included in this study. The 180-week data collected between November 2021 and August 2022 was analyzed. Daily number of steps, travel miles and activity minutes separately showed relationships with PROMIS Pain Intensity (r=-0.312, p&amp;lt; 0.001; r=-0.247, p=0.001; r=-0.239, p=0.001), PROMIS Pain Interference (r=-0.375, p&amp;lt; 0.001; r=-0.318, p&amp;lt; 0.001; r=-0.291, p&amp;lt; 0.001), PHQ-8 (r=-0.403, p&amp;lt; 0.001; r=-0.357, p&amp;lt; 0.001; r=-0.311, p&amp;lt; 0.001), PROMIS Anxiety (r=-0.310, p&amp;lt; 0.001; r=-0.209, p=0.007; r=-0.150, p=0.054), LIBRE Social Interactions (r=0.272, p&amp;lt; 0.001; r=0.291, p&amp;lt; 0.001; r=0.328, p&amp;lt; 0.001) and LIBRE Social Activities (r=0.381, p&amp;lt; 0.001; r=0.414, p&amp;lt; 0.001; r=0.404, p&amp;lt; 0.001). Conclusions Daily number of steps demonstrated a moderate correlation with depression while both daily travel miles and activity minutes showed moderate correlations with social participation. The results support that smartphone-tracked physical activities are related to burn survivors’ psychosocial outcomes. Applicability of Research to Practice This study may inform future use of smartphone-tracked physical activities to understand and track burn recovery and ultimately improve care.

125 Community Socioeconomic Status Is Associated with Social Participation Outcomes

IntroductionSocioeconomic factors are recognized as important social determinants of health. Data however are sparse describing the relationship between socioeconomic status and long term burn outcomes. This study aims to examine associations between community-level socioeconomic status and social participation outcomes in burn survivors.MethodsData was obtained from the Life Impact Burn Recovery Evaluation (LIBRE) Journey study that assesses longitudinal social participation outcomes of community dwelling burn survivors. Subjects were linked to the Distressed Communities Index (DCI), which combines seven indicators into a metric that depicts community economic well-being. Participants were categorized by time since burn (< 5, 5-15, ≥15 years). Linear regression models examined associations between DCI (zip code and county levels) and LIBRE domain scores (Family & Friends, Social Interactions, Social Activities, Work & Employment).ResultsThe study included 314 burn survivors, (mean age 44.1 years; 61.0% female; 48.6% married; 82.8% white). The population was distributed among the time since injury categories (< 5: 35.8%, 5-15: 27.5%, ≥15: 36.7%). Approximately 18% of subjects were categorized in the “at risk” or “distressed” DCI categories. For survivors less than five years from burn, a DCI score increase of 1 standard deviation (worse socioeconomic status) at the zip code level was associated with decreased Family & Friends and Social Activity scores of 2.6 (p=.01) and 2.0 points (p=0.04), respectively (small effect sizes). This relationship was even stronger when controlling for sociodemographic factors. In regression analysis, survivors within the first five years from injury living in “at risk” or “distressed” communities showed worse Family & Friend scores by 6.5 points compared to those living in “prosperous” communities, even after adjusting for age, gender, race, ethnicity, education, and marital status (p=0.04; moderate effect size). There were no significant associations between DCI and LIBRE domain scores for survivors assessed beyond 5 years from injury.ConclusionsSocial participation outcomes were worse in burn survivors who lived in socioeconomically disadvantaged neighborhoods. Burn survivors who face socioeconomic challenges may need additional support to address social disparities to improve outcomes.

74 The Association Between Burn Injury and Peer Relations: A preschool-libre1-5 Study

IntroductionChildren ages one to five years old are naturally curious and build their personality and social skills through interactions with others. Positive peer relations are especially important after a burn injury as bullying and peer rejection can delay development of social skills. This study assessed the association between burn injuries and burn survivors’ ability to connect with and maintain peer relations in this age group using the Preschool-LIBRE 1-5 (Life Impact Burn Recovery Evaluation).MethodsThe Preschool-LIBRE1-5 was field-tested with 426 parents of burn survivors. Each item was scored on a 5-point Likert scale ranging from 0 (never) to 4 (always). Data was recoded for selected items such that higher scores denote better functioning. Classic test theory methods were used to assess the peer relation items from a social functioning domain. Individual items and mean scores in the domain were examined. Multiple linear regression analyses (controlling for gender, race and ethnicity, pain severity, burn injury to critical area, burn size, and age at survey completion) measured the association between demographic and clinical characteristics and calculated a peer relation score based on multiple imputation samples.ResultsThe mean age was 3.06 + 1.41 years, mean time since injury of 1.16 + 1.34 years, mean total body surface area (TBSA%) of 4.21 + 7.92, and 55.16% male and 74.18% white. Items from peer relations item pool (n=15) were identified as a unidimensional scale (α=0.92, item-total correlations for all 15 items >0.4, ratio of the 1st and 2nd eigenvalues (8.729/1.287=6.78) = > 4). The mean peer relation score was 2.86 + 0.76. The two items with the lowest and highest score were “My child would ask for things nicely when playing with other children” (x̄ = 2.09) and “My child liked to play near and be with family members and friends (x̄ = 3.59) respectively. Results indicated that age was a significant predictor, such that older age at survey completion was significantly associated with higher peer relation score (β = 0.16, p < 0.0001). With each year of age increase, peer relationship score increased by 0.16 + 0.21 points.ConclusionsPreschool-aged burn survivors, as reported by parents, often had the ability to connect with peers through imitation and participating in play activities, and maintained peer relationships well. These findings emphasize the importance of promoting early interventions that build social skills, allowing for positive interactions with peers and improving social functioning in the long-term.

25 The Association Between Pain and Sleep Post-burn Injury: A Preschool LIBRE1-5 Study

IntroductionQuality sleep is an essential part of post-injury recovery. Sleep deprivation, including that due to pain, may hinder and slow recovery progression. Therefore, it is vital to assess long-term sleep outcomes post-burn injury. This study examined the association of sleep items with the severity of pain in pediatric burn survivors one to five years of age, using Preschool LIBRE1-5 (Life Impact Burn Recovery Evaluation) parent-reported data.MethodsThe Preschool LIBRE1-5 was administered to 426 parents of burn survivors during field-testing. Three sleep-specific items within the psychological domain were assessed: “My child had frightening dreams or nightmares,” “My child had trouble staying asleep,” and “My child had trouble falling asleep at night.” Each item was scored on a 5-point Likert scale from 0 = never to 4 = always. Pain was assessed on a 4-point severity scale, from 0 = not severe to 3 = very severe and dichotomized (1= not severe and 0 = mild, moderate, and very severe). For sleep items, higher scores denote better functioning. Odds ratios for each of the three items were calculated using logistic regression to measure the association between pain severity with sleep. Lower odds ratios denote that greater pain severity is associated with more sleep problems. The multiple logistic and linear regression analysis included covariates for age at time of survey, gender, race, total body surface area burned (TBSA), Hispanic (yes/no), wound dressings, and burns to critical areas (hands, face, foot). Multiple imputations were used for missing values.ResultsThe sample characteristics included: mean age of 3.1 + 1.4 years, mean time since burn injury of 1.2 + 1.3 years, mean TBSA of 4.2 + 7.9, 55.2% male, and 74.2% white. In the multiple logistic regression analyses, burn survivors with severe pain had significant trouble falling asleep (OR = 0.44, 95% CI [0.24, 0.81]) and staying asleep at night (OR = 0.45, 95% CI [0.24, 0.83]). No association was found with pain severity and frightening dreams or nightmares (OR = 0.8, 95% CI (0.37, 1.75). The multiple linear regression analysis showed that higher scores on pain scales were associated with poor sleep outcomes (R²= 9.5%, p = 0.0016). As pain scores increased, the sleep summed score decreased by 0.46 standard deviation.ConclusionsThere are important associations between pain severity and sleep outcomes. Pain management and interventions for sleep improvement may lead to better outcomes in the pediatric burn population.

769 The association of a burn injury with social engagement: A Preschool-LIBRE1-5 study

IntroductionSocial engagement, primarily through peer interactions, is an active-coping strategy that is key to community re-integration after a burn injury. For young children, social engagement encourages standard development, with burn injuries potentially affecting their likelihood to engage with others. We utilized the parent-report Preschool-LIBRE1-5 (Life Impact Burn Recovery Evaluation) to explore factors that can influence a child’s social engagement.MethodsOur participants were 426 parents of burned children ages one through five who completed the Preschool-LIBRE1-5. Four variables involving social engagement were assessed: “frequency of child avoiding other children,” “frequency of child playing alone,” “frequency of child wanting to be left alone,” and “frequency of child liking to be around other children.” Responses from a 5-point Likert scale ranging from never to always were recoded on a 3-point Likert scale such that a higher score indicated increased social engagement. A nominal logistic regression analysis was conducted with each social engagement variable as a separate dependent variable for each model. The age of the patient when the survey was completed and gender were independent variables. The models also were adjusted by the presence of a hand burn, a face burn, burn size, race, and ethnicity. A bootstrap analysis was conducted to assess internal validity of the significant findings.ResultsThe sample characteristics included: mean age of 3.1+1.4 years, mean time since burn injury of 1.2+1.3 years, mean total body surface area (TBSA) of 4.2+7.9, 55.2% male, and 74.2% white. Findings did not reach significance for three of the dependent variables. However, the dependent variable “frequency of child liking to be around other people” was significant with an increased odds of 35.8% for older children compared to younger ones. (OR [95% CI] =1.358 [1.027, 1.795]). Further, boys were much less likely to want to be left alone (OR [95% CI] = 2.97[1.36,6.5]). Among 500 bootstrap samples, 59% and 79% of the samples replicated the significant findings respectively.ConclusionsIn preschool children with burn injuries, burn location, race, and ethnicity were not associated with the social engagement items tested in this study. Boys did show a higher likelihood of peer engagement suggesting that gender may influence a child’s desire to be alone.

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.

Item Pool Development for the School-Aged Life Impact Burn Recovery Evaluation Profile Computerized Adaptive Test: An Observer-Reported Outcome Assessment Measuring the Impact of Burn Injuries in School-Aged Children.

The transition from early childhood to teen years (5-12) is a critical time of development, which can be made particularly challenging by a burn injury. Assessing postburn recovery during these years is important for improving pediatric survivors' development and health outcomes. Few validated burn-specific measures exist for this age group. The purpose of this study was to generate item pools that will be used to create a future computerized adaptive test (CAT) assessing postburn recovery in school-aged children. Item pool development was guided by the previously developed School-Aged Life Impact Burn Recovery Evaluation (SA-LIBRE5-12) conceptual framework. The item pool development process involved a systematic literature review, extraction of candidate items from existing legacy measures, iterative item review during expert consensus meetings, and parent cognitive interviews. The iterative item review with experts consisted of six rounds. A total of 10 parent cognitive interviews were conducted. The three broad themes of concern were items that needed 1) clarification, needed context, or were vague, 2) age dependence and relevance, and 3) word choice. The cognitive interviews indicated that survey instructions, recall period, item stem, and response choices were interpretable by respondents. Final item pool based on parental feedback consists of 57, 81, and 60 items in physical, psychological, and family and social functioning, respectively. Developed item pools (n = 198) in three domains are consistent with the existing conceptual framework. The next step involves field testing the item pool and calibration using item response theory to develop and validate the SA-LIBRE5-12 CAT Profile.

3 Development of School-Aged Life Impact Burn Recovery Evaluation (SA-LIBRE 5–12) Profile: Item Pool

Abstract Introduction The transition from early childhood to teen years (5–12) is a critical time of development, which can be made particularly challenging by a burn injury. Currently, few validated standardized measures exist for this age group. This study aimed to generate item pools to create a computer adaptive test (CAT) assessing post-burn recovery in school-aged children. Methods Item pool development was based on the School-Aged Life Impact Burn Recovery Evaluation (SA-LIBRE5-12) Conceptual Model and the World Health Organization’s International Classification of Functioning, Disability, and Health for Children and Youth. Additional elements included a literature review, expert consensus meetings, and parent cognitive interviews. Candidate items assessing health outcomes were extracted from existing legacy measures during the literature review. Details of expert consensus meetings and parent cognitive interviews are in Table 1. Results Items assessing health outcomes (n=3,732) were extracted during the literature review. Experts binned items across three domains: 1) Physical Functioning (55 items), 2) Psychological Functioning (80 items), and 3) Family and Social Functioning (57 items). Six cognitive interviews were conducted. Qualitative data resulted in further review of 86 items. The results of the cognitive interviews indicated that item stems and response choices were interpretable by respondents. Conclusions This study developed an item pool (n=192) to assess post-burn recovery of school-aged children. The next step in the SA-LIBRE5-12 CAT Profile development will be field-testing for the calibration and item response theory-based validation of the assessment.

1 Development of the School-Aged Life Impact Burn Recovery Evaluation (SA-LIBRE: 5–12) Profile: A Conceptual Model Framework

Abstract Introduction Pediatric burn injuries can alter the trajectory of the survivor’s entire life. Patient-centered outcome measures are helpful to capture and assess their unique physical and psychosocial needs and long-term recovery. This study aimed to develop a conceptual model framework to measure outcomes most important to pediatric burn survivors aged 5 to 12 years as a part of the SA-LIBRE5-12 Computer Adaptive Test (CAT) development. Methods This study used a systematic literature review guided by the WHO International Classification of Functioning – Child and Youth. Previously established domains in the American Burn Association/Shriners Hospitals for Children Burn Outcomes Questionnaire5-18 further guided framework development. Individual interviews with parents and clinicians were conducted to obtain perspectives on domains most important to assess following a burn injury in children aged 5 to 12 years. One clinician focus group was completed to identify gaps in the preliminary framework, and semi-weekly expert consensus meetings were conducted to solidify the framework. Qualitative data were analyzed by grounded theory methodology in NVivo 12 software. Results The literature review identified 82 articles. Eight parents and seven clinicians participated in individual interviews, four clinicians participated in one focus group, and three consultants were included in the expert consensus meetings. The consultants included a burn surgeon, psychiatrist, and health services researcher. Three major domains emerged from the grounded theory approach, including: 1) Physical Functioning: fine motor and upper extremity, gross motor and lower extremity, pain, skin sensitivity, sleep and fatigue, and physical resilience; 2) Psychological Functioning: cognitive, behavioral, emotional, resilience, and body image; and 3) Family and Social Functioning: school, peer relations, community participation, family relationships, and parental satisfaction. Conclusions The comprehensive literature review, clinician and parent individual interviews, clinician focus group, and expert consensus meetings resulted in a conceptual model framework for parent-reported health outcomes after a burn injury in school-aged children aged 5 to 12 years. The framework will be used to develop item banks for a CAT-based assessment of school-aged children’s health and developmental outcomes.

Measuring the impact of burn injury on the parent-reported health outcomes of children 1-to-5 years: Item pool development for the Preschool1–5 Life Impact Burn Recovery Evaluation (LIBRE) Profile

Modern, reliable, and valid outcome measures are essential to understanding the health needs of young children with burn injuries. Burn-specific and age-appropriate legacy assessment tools exist for this population but are hindered by the limitations of existing paper-based instruments. The purpose of this study was to develop item pools comprised of questions appropriate for children aged 1–5 with burn injuries. Item development was based on a framework provided by previous work to develop the Preschool Life Impact Burn Recovery Evaluation (LIBRE) Conceptual Model. The Preschool LIBRE Conceptual Model work established four sub-domains of functioning for children with burns aged 1–5. Item development involved a systematic literature review, a qualitative item review process with clinical experts, and parent cognitive interviews. Four item pools were established: (1) communication and language development; (2) physical functioning; (3) psychological functioning and (4) social functioning for preschool-aged children with burn injuries. We selected and refined candidate items, recall periods, survey instructions, and response option choices through clinical and parental feedback during the qualitative review and cognitive interview processes. Item pools are currently being field-tested as part of the process to calibrate and validate the Preschool1–5 LIBRE Computer Adaptive Test (CAT) Profile.

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

BackgroundEngaging 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. MethodsData 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. ResultsParticipants 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. ConclusionsThe 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.