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.

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.

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.

Physical, Psychological, and Social Outcomes in Pediatric Burn Survivors Ages 5 to 18 Years: A Systematic Review.

Acute pediatric burn injuries often result in chronic sequelae that affect physical, psychological, and social outcomes. To date, no review has comprehensively reported on the impact of burn injuries across all three domains in school-aged children. The aim of this systematic review was to identify published literature that focuses on the impact of burn injuries on physical, psychological, or social functioning, and report upon the nature of study characteristics and their outcomes. We included literature published after 1980, focusing on burn outcomes in children aged 5 to 18 years. Each eligible study was systematically reviewed and primary outcomes were classified into outcome domains based on existing frameworks. Fifty-eight studies met inclusion criteria, and reported on physical (n = 24), psychological (n = 47), and social (n = 29) domains. The majority of the studies had sample sizes of <100 participants, burn size of <40%, and findings reported by parents and/or burn survivors. Only eight of 107 different measures were used in three or more studies. Parents and burn survivors generally reported better physical and social outcomes and worse psychological functioning compared to non-burn populations. Physical disabilities were associated with psychological and social functioning in several studies. Follow-up data reported improvements across domains. This review demonstrates the importance of physical, psychological, and social status as long-term outcomes in burn survivors. Mixed findings across three outcome domains warrant long-term research. Findings of this review will guide the foundation of comprehensive burn and age-specific instruments to assess burn recovery.

Development of the School-Aged Life Impact Burn Recovery Evaluation (SA-LIBRE5-12) Profile: A Conceptual Framework.

Pediatric burn injuries can alter the trajectory of the survivor's entire life. Patient-centered outcome measures are helpful to assess unique physical and psychosocial needs and long-term recovery. This study aimed to develop a conceptual framework to measure pediatric burn outcomes in survivors aged 5 to 12 years as a part of the School-Aged Life Impact Burn Recovery Evaluation Computer Adaptive Test (SA-LIBRE5-12 CAT) development. This study conducted a systematic literature review guided by the WHO International Classification of Functioning-Child and Youth and domains in the American Burn Association/Shriners Hospitals for Children Burn Outcomes Questionnaire5-18. Interviews with eight parents and seven clinicians were conducted to identify important domains in child recovery. One clinician focus group with four clinicians was completed to identify gaps in the preliminary framework, and semiweekly expert consensus meetings were conducted with three experts to solidify the framework. Qualitative data were analyzed by grounded theory methodology. Three major thematic outcome domains emerged: 1) Physical Functioning: fine motor and upper extremity, gross motor and lower extremity, pain, skin symptoms, sleep and fatigue, and physical resilience; 2) Psychological Functioning: cognitive, behavioral, emotional, resilience, and body image; and 3) Family and Social Functioning: family relationships, and parental satisfaction, school, peer relations, and community participation. The framework will be used to develop item banks for a CAT-based assessment of school-aged children's health and developmental outcomes, which will be designed for clinical and research use to optimize interventions, personalize care, and improve long-term health outcomes for burned children.