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.

Posttraumatic Stress Disorder Symptom Clusters as Predictors of Pain Interference in Burn Survivors: A Burn Model System National Database Study.

Individuals who experience burns are at higher risk of developing posttraumatic stress disorder and chronic pain. A synergistic relationship exists between posttraumatic stress disorder and chronic pain. We sought to evaluate the role of individual posttraumatic stress disorder symptom clusters as predictors of pain interference. We hypothesized that the hyperarousal and emotional numbing symptom clusters would be predictive of pain interference, even when accounting for the other two posttraumatic stress disorder symptom clusters, pain intensity, and other covariates. Multivariate linear regression analyses were completed using data from the Burn Model System National Database. A total of 439 adult participants had complete responses on self-report measures assessing posttraumatic stress disorder symptoms, pain intensity, and pain interference at 6-month after discharge and were included in analyses. Results indicate hyperarousal (B = .10, p = .03) and emotional numbing (B = .13, p = .01) posttraumatic stress disorder symptom clusters were each significantly associated with pain interference, even when accounting for pain intensity (B = .64, p < .001). Results highlight the importance of the emotional numbing and hyperarousal posttraumatic stress disorder symptom clusters in explaining pain interference. Findings suggest that when posttraumatic stress disorder symptoms or chronic pain are present, screening for and treating either condition may be warranted to reduce pain interference. Further, psychological interventions that target emotional numbing and hyperarousal posttraumatic stress disorder symptoms may be fruitful for promoting better coping with chronic pain and reducing pain interference.

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.

Predicting Depression and Posttraumatic Stress Symptoms Following Burn Injury: A Risk Scoring System.

Depression and posttraumatic stress (DPTS) are common psychiatric comorbidities following burn injury. The purpose of this study was to develop an admission scoring system that assesses the risk of development of depression or posttraumatic symptoms in the burn population. This study is a retrospective review of the prospectively collected Burn Model System National Database. Adult burn survivors enrolled from 2014 to 2018 (n = 486) were included. The primary outcome was the presence of DPTS symptoms at 6, 12, or 24 months postinjury. Logistic regression analysis was used to identify demographic and clinical predictors of DPTS symptoms. A risk scoring system was then created based on assigning point values to relevant predictor factors. The study population had a mean age of 46.5 ± 15.8 years, mean burn size of 18.3 ± 19.7%, and was 68.3% male. Prior to injury, 71.3% of the population was working, 47.9% were married, and 50.8% had completed more than a high school education. An 8-point risk scoring system was developed using the following predictors of DPTS symptom development: gender, psychiatric treatment in the past year, graft size, head/neck graft, etiology of injury, and education level. This study is the first to develop a DPTS symptom risk scoring system for burn injury. This scoring system will aid in identifying burn survivors at high risk of long-term psychiatric symptoms that may be used to improve screening, monitoring, timely diagnosis, and interventions.

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.

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.

Appearance Concerns, Psychosocial Outcomes, and the Feasibility of Implementing an Online Intervention for Adolescents Receiving Outpatient Burn Care.

The current study assessed the prevalence of appearance concerns, psychosocial difficulty, and use of an appearance-focused social and psychological support resource (Young Person's Face IT; YPF) within a population of teens (12-17 year-olds) receiving outpatient burn care with the goal to assess the feasibility of routine use of the resource in outpatient burn care. The study sample included 78 patients ages 12 to 17 receiving outpatient care for burns at one hospital. Appearance concerns were measured via the Burn Outcomes Questionnaire Appearance Subscale, the Appearance Subscale of the Body Esteem Scale for Adolescents, and a 2-part question which asked participants directly about appearance concerns related to the burn injury. A large majority (70.0%) of study participants reported appearance concerns on at least one appearance measure and girls reported more burn-related appearance concerns compared with boys. Psychosocial difficulty was measured via the Pediatric Symptom Checklist-17 (PSC-17) and measures of social functioning were collected and compared within the sample by burn size, burn location, sex, and appearance concerns. Internalizing symptoms were prevalent on the PSC-17 (18.6% risk) and decreased self-worth and increased social anxiety symptoms were significantly associated with having appearance concerns. Although interest in YPF was high (78.3%), actual use of the resource among those who signed up to pilot it (n = 46 participants) was low (19.4% use). Results indicate that there is a need for and interest in appearance-focused social anxiety resources for adolescents with burn injuries such as YPF, but more research is needed to understand its feasibility in clinical practice.

Exploring the Burn Model System National Database: Burn injuries, substance misuse, and the CAGE questionnaire.

Burn survivors who misuse alcohol and/other substances have been associated with poorer long-term outcomes and clinical complications following injury. The self-reported CAGE questionnaire (Cut down, Annoyed, Guilty, and Eye-opener) is an outcomes assessment tool used to screen for potential substance misuse. Understanding the persistence and emergence of potential substance misuse through examination of CAGE scores may provide important information about this population. Using data collected from the Burn Model System National Database, demographic and clinical characteristics of individuals who reported positive CAGE scores (total score of ≥2) and those who reported negative CAGE scores (total score of 0 or 1) for either alcohol or other drugs were compared.

Measuring the Impact of Burn Injury on the Parent-Reported Health Outcomes of Children 1 to 5 Years: A Conceptual Framework for Development of the Preschool Life Impact Burn Recovery Evaluation Profile CAT.

Due to the rapid developmental growth in preschool-aged children, more precise measurement of the effects of burns on child health outcomes is needed. Expanding upon the Shriners Hospitals for Children/American Burn Association Burn Outcome Questionnaire 0 to 5 (BOQ0-5), we developed a conceptual framework describing domains important in assessing recovery from burn injury among preschool-aged children (1-5 years). We developed a working conceptual framework based on the BOQ0-5, the National Research Council and Institute of Medicine's Model of Child Health, and the World Health Organization's International Classification of Functioning, Disability, and Health for Children and Youth. We iteratively refined our framework based on a literature review, focus groups, interviews, and expert consensus meetings. Data were qualitatively analyzed using methods informed by grounded theory. We reviewed 95 pediatric assessments, conducted two clinician focus groups and six parent interviews, and consulted with 23 clinician experts. Three child health outcome domains emerged from our analysis: symptoms, functioning, and family. The symptoms domain describes parents' perceptions of their child's pain, skin-related discomfort, and fatigue. The functioning domain describes children's physical functioning (gross and fine motor function), psychological functioning (internalizing, externalizing, and dysregulation behavior; trauma; toileting; resilience), communication and language development (receiving and producing meaning), and social functioning (connecting with family/peers, friendships, and play). The family domain describes family psychological and routine functioning outcomes.

Exploratory analysis of long-term physical and mental health morbidity and mortality: A comparison of individuals with self-inflicted versus non-self-inflicted burn injuries.

INTRODUCTION: Self-inflicted burn (SIB) injuries are relatively rare, but patients may experience complex biopsychosocial challenges. This study aimed to compare long-term physical and psychological outcomes for individuals with SIB and non-SIB injuries. METHODS: Records of adult SIB (n = 125) and non-SIB (n = 3604) injuries were collected from U.S. burn centers within the Burn Model System between 1993 and 2018. Assessments were administered at discharge, 6 months, 24 months, 5 years, and 10 years. RESULTS: SIB patients were more often younger, unmarried, unemployed, male, struggling with pre-morbid psychiatric issues, and injured by fire/flame (all p < 0.001). SIB injury predicted prolonged mechanical ventilation, hospitalization, and rehabilitation (all p < 0.001). After injury, SIB patients had increased anxiety at 24 months (p = 0.0294), increased suicidal ideation at 5 years (p = 0.004), and clinically worse depression at 10 years (p = 0.0695). SIB patients had increased mortality across 24 months compared to non-SIB patients (OR = 4.706, p = 0.010). CONCLUSION: SIB injuries are associated with worse physical and psychological outcomes compared to non-SIB injuries including complicated hospitalizations and chronic problems with anxiety, depression, suicidality, and mortality, even when controlling for common indicators of severity such as burn size. This underscores the importance of multidisciplinary treatment, including mental healthcare, and long-term follow-up for SIB patients. Identified pre-morbid risk factors indicate the need for targeted injury prevention.

The Effect of Facial Burns on Long-Term Outcomes in Young Adults: A 5-Year Study.

Long-term functional outcomes in young adults with facial burns remain poorly studied. This 5-year (2003-2008) prospective multicenter study includes burn survivors (age 19-30 years) who completed the Young Adult Burn Outcome Questionnaire (YABOQ) from 0 to 36 months after baseline survey administration. A composite canonical score was developed from 15 YABOQ domains using discriminant analysis, maximizing the difference at the baseline between burn-injured patients with face involved and not involved. A generalized linear model with the generalized estimation equation technique was used to track the changing pattern of the composite score over time. Individual domain scores with high correlation to the canonical score were used to evaluate recovery patterns in facial burns. A total of 153 burned (31% with face burns) and 112 nonburned subjects completed 620 questionnaires. Canonical analysis showed that early postburn, facial burns were associated with a difference in outcome, but this overall difference diminished over time. Regression analysis showed that for survivors with facial injury, Emotion and Sexual Function scores were persistently lower (worse), while Religion scores were persistently higher. Satisfaction with Role was initially better than the nonface burned group, but over time got worse, while Perceived Appearance was initially worse in the face burned group but this difference diminished over time. Social Function Limited by Appearance was initially similar between the groups, but over time the group with face burns scored lower. The overall difference in recovery between survivors with and without facial burns diminished over time while the individual domains had various patterns of recovery.

Development of clinical process measures for pediatric burn care: Understanding variation in practice patterns.

BACKGROUND: There has been little systematic examination of variation in pediatric burn care clinical practices and its effect on outcomes. As a first step, current clinical care processes need to be operationally defined. The highly specialized burn care units of the Shriners Hospitals for Children system present an opportunity to describe the processes of care. The aim of this study was to develop a set of process-based measures for pediatric burn care and examine adherence to them by providers in a cohort of pediatric burn patients. METHODS: We conducted a systematic literature review to compile a set of process-based indicators. These measures were refined by an expert panel of burn care providers, yielding 36 process-based indicators in four clinical areas: initial evaluation and resuscitation, acute excisional surgery and critical care, psychosocial and pain control, and reconstruction and aftercare. We assessed variability in adherence to the indicators in a cohort of 1,076 children with burns at four regional pediatric burn programs in the Shriners Hospital system. The percentages of the cohort at each of the four sites were as follows: Boston, 20.8%; Cincinnati, 21.1%; Galveston, 36.0%; and Sacramento, 22.1%. The cohort included children who received care between 2006 and 2010. RESULTS: Adherence to the process indicators varied both across sites and by clinical area. Adherence was lowest for the clinical areas of acute excisional surgery and critical care, with a range of 35% to 48% across sites, followed by initial evaluation and resuscitation (range, 34%-60%). In contrast, the clinical areas of psychosocial and pain control and reconstruction and aftercare had relatively high adherence across sites, with ranges of 62% to 93% and 71% to 87%, respectively. Of the 36 process indicators, 89% differed significantly in adherence between clinical sites (p < 0.05). Acute excisional surgery and critical care exhibited the most variability. CONCLUSION: The development of this set of process-based measures represents an important step in the assessment of clinical practice in pediatric burn care. Substantial variation was observed in practices of pediatric burn care. However, further research is needed to link these process-based measures to clinical outcomes. LEVEL OF EVIDENCE: Therapeutic/care management, level IV.

Posttraumatic Stress Disorder Diagnosis in Young Children With Burns.

The primary aim of this study was to assess the prevalence of posttraumatic stress disorder (PTSD) in young children hospitalized for burns. A secondary aim was to assess partial PTSD in this population. PTSD diagnosis and symptoms were evaluated utilizing both the diagnostic interview for children and adolescents (DICA-P) module and the PTSD semistructured interview and observational report (PTSDSSI). PTSD symptomatology was assessed from parent interviews at 1 month after discharge from a major pediatric burn center. Four of the 42 participants who completed the DICA-P met full criteria for a diagnosis of PTSD (10%).Of the 39 who also completed the PTSDSSI, 1 (3%) met full criteria for PTSD diagnosis on that measure. Twenty-seven percentage of subjects met partial criteria on the DICA-P vs 16% on the PTSDSSI, without impairment. Furthermore, 67% of subjects met DICA-P criteria for the re-experiencing cluster and 54% met the PTSDSSI re-experiencing criteria. Although only a small percentage met full PTSD diagnostic criteria by either measure, a high percentage of young children with burns manifested some posttraumatic symptoms 1 month after discharge. Because PTSDSSI diagnosis is strongly linked to the diagnostic and statistical manual-5 (DSM-5) criteria for "PTSD in children 6 years and younger," these results may offer clues to current diagnoses of PTSD in young children. Future research is needed to improve care by determining the risk factors and course of PTSD to further refine the diagnostic criteria for identifying children most in need of intervention, such as those hospitalized for burn injuries.

Physical and psychiatric recovery from burns.

Burn injuries pose complex biopsychosocial challenges to recovery and improved comprehensive care. The physical and emotional sequelae of burns differ, depending on burn severity, individual resilience, and stage of development when they occur. Most burn survivors are resilient and recover, whereas some are more vulnerable and have complicated outcomes. Physical rehabilitation is affected by orthopedic, neurologic, and metabolic complications and disabilities. Psychiatric recovery is affected by pain, mental disorders, substance abuse, and burn stigmatization. Individual resilience, social supports, and educational or occupational achievements affect outcomes.

Physical and psychiatric recovery from burns.

Burn injuries pose complex biopsychosocial challenges to recovery and improved comprehensive care. The physical and emotional sequelae of burns differ, depending on burn severity, individual resilience, and stage of development when they occur. Most burn survivors are resilient and recover, whereas some are more vulnerable and have complicated outcomes. Physical rehabilitation is affected by orthopedic, neurologic, and metabolic complications and disabilities. Psychiatric recovery is affected by pain, mental disorders, substance abuse, and burn stigmatization. Individual resilience, social supports, and educational or occupational achievements affect outcomes.

Outcomes of traumatic exposure.

There is a great need to recognize, prevent, reduce, or treat the immediate and long-term effects of childhood trauma. Most children affected by trauma will not develop long-term posttraumatic sequelae due to their resilience, but comorbid psychopathological outcomes occur and are more common after exposure to severe traumatic events. Factors influencing posttraumatic outcomes are numerous. Young dependent children tend to be more susceptible than older children; children with pain or injury are also more susceptible. Psychopathological effects may not be evident until adulthood. Awareness of the range of adverse outcomes underscores the importance of preventive interventions, accurate assessment, diagnosis and where possible, treatment. Advocacy and public policy initiatives are essential to improving outcomes.