Recovery Curves for Pediatric Burn Survivors: Advances in Patient-Oriented Outcomes.

IMPORTANCE: Patient-reported outcomes serving as benchmarks for recovery of pediatric burn survivors are lacking, and new approaches using longitudinal cohorts for monitoring their expected recovery based on statistical models are needed for patient management during the early years following the burn. OBJECTIVE: To describe multidimensional patient-reported outcomes among pediatric burn survivors younger than 5 years to establish benchmarks using recovery curve methods. DESIGN, SETTING, AND PARTICIPANTS: Prospective cohort study of pediatric burn survivors younger than 5 years at 12 burn centers. Age-matched nonburned reference groups were studied to define expected results in normal growth and development. The Burn Outcomes Questionnaire for children aged 0 to 5 years (BOQ0-5) was administered to parents of children who had burns and were younger than 5 years. Mixed models were used to generate 48-month recovery curves for each of the 10 BOQ0-5 domains. The study was conducted between January 1999 and December 2008. MAIN OUTCOMES AND MEASURES: The 10 BOQ0-5 domains including play, language, fine motor skills, gross motor skills, emotional behavior, family functioning, pain/itching, appearance, satisfaction with care, and worry/concern up to 48 months after burn injury. RESULTS: A total of 336 pediatric burn survivors younger than 5 years (mean [SD] age, 2.0 [1.2] years; 58.4% male; 60.2% white, 18.6% black, and 12.0% Hispanic) and 285 age-matched nonburned controls (mean [SD] age, 2.4 [1.3] years; 51.1% male; 67.1% white, 8.9% black, and 15.0% Hispanic) completed the study. Predicted scores improved exponentially over time for 5 of the BOQ0-5 domains (predicted scores at 1 month vs 24 months: play, 48.6 vs 52.1 [P = .03]; language, 49.2 vs 54.4 [P < .001]; gross motor skills, 48.7 vs 53.0 [P = .002]; pain/itching, 15.8 vs 33.5 [P < .001]; and worry/concern, 31.6 vs 44.9 [P < .001]). Pediatric burn survivors had higher scores in language, emotional behavior, and family functioning domains compared with healthy children in later months. CONCLUSIONS AND RELEVANCE: This study demonstrates significant deficits in multiple functional domains across pediatric burn survivors compared with controls. Recovery curves can be used to recognize deviation from the expected course and tailor care to patient needs.

Long-term posttraumatic stress symptoms vary inversely with early opiate dosing in children recovering from serious burns: effects durable at 4 years.

BACKGROUND: Children surviving serious burns are at risk for developing posttraumatic stress disorder (PTSD) as a function both of the injury and of its treatment. Short-term studies in such children have demonstrated reduced PTSD symptoms with intensive early pain control. However, the long-term impact of early pain control strategies on posttraumatic stress symptoms in children recovering from serious burn injuries has not been examined. METHODS: This was a retrospective review of a multiple time point data collection involving a cohort of 147 infants, children, and teenagers with 4 years of follow-up after serious burns conducted at 4 pediatric burn centers to examine the impact of early opiate dosing on long-term posttraumatic stress symptoms. The main outcome measure was the nine-item Short Form Child Stress Disorders Checklist, which is an established and validated assessment. The impact of total opiate dosing during the first 7 days on these scores was assessed. RESULTS: Subjects had an average age of 11 years and average injury size of 22% total body surface area burned (%TBS). The correlation between opiate units (OUs) and %TBS was 0.46 at baseline, OU increasing with increasing %TBS. OUs were strongly predictive of Child Stress Disorders Checklist scores up to 4 years, with higher OU (10 units vs. 6 and 2 units) remaining constantly different up to 4 years in predicting lower stress scores for both smaller and larger burns. CONCLUSION: Early opiate management of pain associated with acute burn wounds and burn treatment predicts the development and resolution rate of PTSD symptoms in a large multicenter sample of children hospitalized for serious burns. The effect seems to be dose related and durable at least up to 4 years in a range of burn sizes. LEVEL OF EVIDENCE: Prognostic/epidemiologic study, level II.

Five-year experience with burns from glass fireplace doors in the pediatric population.

Burns from contact with glass doors of gas fireplaces have been previously reported. The purpose of this study is to examine the incidence and severity of this injury in our population. Patients were identified for inclusion in the retrospective chart review study using the National Trauma Registry of the American College of Surgeons (NTRACS) and our local outpatient database. Criteria for inclusion were burn injuries sustained from contact with fireplace glass doors treated at our pediatric burn center from 2007 through 2011. Fifty children met these criteria, including two children whose burns were caused by electric fireplace glass doors. BSA burned was 1.5 ± 1.5% (mean ± SD), range 0.5 to 10%. Age was 27.2 ± 27.3 months, range 8 months to 13 years. Forty-five children (90%) had hand burns; of these, 18 children had bilateral hand involvement. Facial burns were found in three children (6%), and eight children (16%) had other areas burned. One patient developed cellulitis. Two patients required surgery. Six children (12%) required hospitalization; mean length of stay was 5.8 ± 5 days, range 1 to 5 days. Although the number of inpatient admissions was relatively few, 329 outpatient visits and 309 rehabilitation visits were required for treatment of these children. Nineteen patients (38%) required splints and six patients (12%) required scar treatment with pressure garments. Burns from contact with fireplace glass doors are a recurring problem. Toddlers are most at risk. Directed preventive strategies including parent education, safety warnings, and design modifications such as temperature sensors and barrier screens could be potentially helpful in reducing the incidence of this injury.

Benchmarks for multidimensional recovery after burn injury in young adults: the development, validation, and testing of the American Burn Association/Shriners Hospitals for Children young adult burn outcome questionnaire.

Although data exist on burn survival, there are little data on long-term burn recovery. Patient-centered health outcomes are useful in monitoring and predicting recovery and evaluating treatments. An outcome questionnaire for young adult burn survivors was developed and tested. This 5-year (2003-2008) prospective, controlled, multicenter study included burned and nonburned adults ages 19 to 30 years. The Young Adult Burn Outcome Questionnaires were completed at initial contact, 10 days, and 6 and 12 months. Factor analysis established construct validity. Reliability assessments used Cronbach α and test-retest. Recovery patterns were investigated using generalized linear models, with generalized estimating equations using mixed models and random effects. Burned (n = 153) and nonburned subjects (n = 112) completed 620 questionnaires (47 items). Time from injury to first questionnaire administration was 157 ± 36 days (mean ± SEM). Factor analysis included 15 factors: Physical Function, Fine Motor Function, Pain, Itch, Social Function Limited by Physical Function, Perceived Appearance, Social Function Limited by Appearance, Sexual Function, Emotion, Family Function, Family Concern, Satisfaction With Symptom Relief, Satisfaction With Role, Work Reintegration, and Religion. Cronbach α ranged from 0.72 to 0.92, with 11 scales >0.8. Test-retest reliability ranged from 0.29 to 0.94, suggesting changes in underlying health status after burns. Recovery curves in five domains, Itch, Perceived Appearance, Social Function Limited by Appearance, Family Concern, and Satisfaction with Symptom Relief, remained below the reference group at 24 months. The Young Adult Burn Outcome Questionnaire is a reliable and valid instrument for multidimensional functional outcomes assessment. Recovery in some domains was incomplete.

Methods for assessment of health outcomes in children with burn injury: the Multi-Center Benchmarking Study.

BACKGROUND: The Multi-Center Benchmarking Study (MCBS) is an innovative program giving a new paradigm for monitoring health outcomes in children and adolescents with burn injuries. METHODS: This article presents the methodologies for conducting a multicenter long-term cohort study of 1,140 children and adolescents with small to large burn injuries followed from the acute burn discharge at four burn centers for up to 4 years. The components for this project include a broad and rich range of patient-centered health assessments tailored to children with burn injury, an infrastructure for obtaining relevant clinical data, and patient-centered questionnaire data based on validated Shriners Hospitals for Children/American Burn Association Burn Outcomes Questionnaire (BOQ) and Short-Form Psychosocial Questionnaire, aged 0 years to 18 years. Recovery curves are described for analysis of complex data with repeated measures that are based on mixed models and generalized estimating equations, with adjustments for clinical characteristics. RESULTS: Accrual rates are as high as 93%, and follow-up rates of completion are 65%. Recovery curves for selected BOQ domains (upper extremity function, patient compliance, and parental concern) are presented for those children and adolescents aged 5 years to 18 years using the rich cohort of data from the MCBS. Results suggest that the BOQ is sensitive and responsive to capturing differences in the rate and levels of change over time. CONCLUSION: The methods implemented in the MCBS are a useful model for conducting large multicenter studies to track the clinical and quality of life of children with burn injuries.

Impact of hand burns on health-related quality of life in children younger than 5 years.

BACKGROUND: The purpose of this multicenter study was to evaluate the impact of hand burn injury in preschool children younger than 5 years on health-related quality of life, including both physical and psychosocial function, in the 5 years after burn injury. METHODS: This prospective case series assessed children younger than 5 years admitted to four pediatric burn centers. Each child's family completed the American Burn Association/Shriners Hospitals for Children Burn Outcome Questionnaire (BOQ), a validated and reliable assessment tool, which measures the physical and psychosocial functioning of the child with burn injury ages 0 year to 5 years, at baseline, 3, 6, 12, 18, 24, 36, and 48 months after discharge. Multivariate models controlling for sociodemographic and clinical characteristics were developed, and recovery curves were generated for the time since burn using generalized estimating equations with random effects. RESULTS: A cohort of 438 patients was followed up prospectively. Mean (SD) patient age was 2.2 (1.2) years, mean (SD) total body surface area (TBSA) was 28% (22.4%), and 19% had inhalation injury. Children with hand burns had lower scores in most of the areas tested, with the most pronounced and significant differences were in fine motor function, gross motor function, and appearance. These findings applied to both small (<20% TBSA) and large (≥20% TBSA) burns. The most profound impact of hand burns was noted in fine and gross motor function during the 4 years of follow-up. CONCLUSION: Children with hand burns have significantly worse outcomes than do children with burns in other areas.

The effect of family characteristics on the recovery of burn injuries in children.

BACKGROUND: Interactions between family members and characteristics of family life and function may affect a child's recovery from burn injury. We prospectively examined the relationship between family characteristics and physical and psychosocial recovery from burns. METHODS: The families of 399 burned children aged 5 years to 18 years admitted to one of four Shriners Hospitals for Children for management of acute burns completed the Family Environment Scale within 7 days of admission and then the American Burn Association/Shriners Hospitals for Children Burn Outcome Questionnaire (BOQ) at baseline, 3, 6, 12, 18, 24, 36, and 48 months. Generalized estimating equations with random effects for the time since burn were used to track recovery of the BOQ patient-centered domains associated with baseline family characteristics during the course of the study. RESULTS: The children had a mean age of 11 years and burn size of 32% total body surface area burned. Higher Family Environment Scale scores in cohesion, independence, organization, and active recreational orientation were associated with significantly better rates of recovery in multiple BOQ domains of health-related quality of life. Higher scores in conflict and achievement orientation predicted statistically significant impaired recovery. Higher expressiveness predicted greater difficulty with school reentry. CONCLUSION: Family characteristics affect the recovery of children after serious burns. Some of these may be amenable to focused anticipatory family interventions to help optimize outcomes. In particular, those characteristics that impair school reentry should be targeted.

Adolescent survivors of burn injuries and their parents' perceptions of recovery outcomes: do they agree or disagree?

BACKGROUND: This study analyzed the concordance of parent and child in assessing the progress of child and adolescent survivors of burn injuries using health outcomes. METHODS: The American Burn Association/Shriners Hospitals for Children Burn Outcomes Questionnaire (BOQ) was completed by 355 pairs of parents and their 11- to 18-year-old adolescents who experienced a burn injury. These patients completed BOQ child/parent questionnaire pairs at four regional pediatric burn care centers nationally during the first 4 years postburn. The BOQ includes 12 scales that range from physical to emotional health. Predicted recovery curves for each scale (dependent variable) were obtained from generalized linear models, with the independent variables the logarithmic transformation of the time since burn and parent/child as the principal indicator. Covariates included sociodemographics and clinical severity. RESULTS: Mean differences between the parent and adolescent scale scores were small, with few insignificant exceptions. Most of the recovery curves over time for the parent and the adolescent were undifferentiated, except for the outcome of appearance where the adolescent rating was better than that of the parent (p < 0.01) and itch was judged as worse than that of the parent (p < 0.01). School reentry was rated higher by the adolescent initially (p < 0.001), but after 18 months, it was rated higher by the parent (p = 0.012). CONCLUSION: Analysis of the BOQ completed by adolescents and their parents reveal similar estimates of recovery following the burn injury. These results suggest that the adolescent's reported outcomes can be used interchangeably with the parent's assessments, with the exception of appearance, itch, and school reentry, where there are some differences.

Test performance characteristics of a case-finding psychosocial questionnaire for children with burn injuries and their families.

BACKGROUND: The Long-Form Psychosocial Questionnaire (LFPQ) includes full versions of the Child Stress Reaction Checklist, the Family Environment Scale, and the Parenting Stress Index. Condensed versions of these measures were used to create a Short-Form Psychosocial Questionnaire (SFPQ) that could be used as an indicator of child well-being and specific areas of child, parent, and family functioning in children aged 0 years to 18 years with burn injury. METHODS: Parents of 830 children aged 0 years to 18 years with acute burn injury from the Shriners Hospitals for Children Multi-Center Benchmarking Study completed the LFPQ at baseline and follow-up visits up to 48 months at four major burn centers. The internal consistency reliability and variability of the LFPQ explained by the SFPQ for each of the measures were calculated. The construct validity of the SFPQ measures was determined by factor analysis. The magnitude of the change for the SFPQ measures during 48 months of follow-up was examined. RESULTS: The internal consistency reliability of the short-form measures ranged from 0.62 to 0.90. The variability of the long-form measures explained by the short-form measures was 61% for the Child Stress Reaction Checklist (average of six long-form scales), 60% for the Family Environment Scale (conflict), and 90% for the Parenting Stress Index (average of 13 scales). Factor analysis supported the construct validity of the model for the short-form measures. The magnitude of change for the short-form measures showed clinical improvement for 48 months. CONCLUSION: The SFPQ is both a reliable and valid assessment for evaluating the psychosocial functioning of children following burn injuries.

Measuring the cost of care for children with acute burn injury.

BACKGROUND: There have been few studies on costs of burn treatment. Furthermore, quantifying the actual cost of care at the patient level is hindered by anomalies of our insurance system. This article presents a practical method for determining the cost of caring for pediatric burn patients, using a cohort of patients from the Multi-Center Benchmarking Study at the Shriners Hospitals for Children-Boston and allows an estimate of resource use that may be linked to need or to best practices, without the confounding variable of inconsistent billing practices. METHODS: We estimated the cost of hospitalization for a cohort of 230 pediatric patients who sustained burn injuries. In a simulation of billing patterns of all US hospitals between 2001 and 2009, we applied Shriners Hospitals for Children use data to two external sources of cost information. For the hospital component of costs, we used the Healthcare Cost and Utilization Project Kid's Inpatient Database, and for the physician component of costs, we used the Medicare fee schedule. RESULTS: Patients had a mean of 1.9 hospitalizations over 3 to 4 years. The mean total cost of hospitalization was $83,535 per patient, and the median total cost was $16,331 in 2006 dollars. CONCLUSION: This is the first effort to estimate the early hospital costs of caring for children and young adults with burns in specialty hospitals and to establish a referent for quantifying the cost of caring for patients with acute burns. It lays the groundwork for studies relating costs of specific interventions to their effects on patient-centered outcomes.

Patterns of medication administration from 2001 to 2009 in the treatment of children with acute burn injuries: a multicenter study.

Children with burn injuries receive a broad range of medications, from analgesics to antipsychotics, but how utilization of these drugs differs from one pediatric burn center to another is unclear. This study examined utilization patterns of six categories of medication administered acutely to burned children as a first step in creating evidence-based practice guidelines. Six medications administered to pediatric patients enrolled in a multicenter study were recorded from patient charts using a standardized chart review template. The medication categories included opiates, benzodiazepines, antidepressants, beta-blockers, two different anesthetics, and antipsychotics. Data were analyzed by χ and logistical regression analysis. Analysis of data from three sites and 470 patients revealed significant differences in prescription patterns across hospitals for all medication groups except opiates. Differences were significant for benzodiazepines and antidepressants (χ = 7.3; P < .01 for both) controlling for age, gender, race, language, burn size, and length of stay. Differences in prescribing patterns for beta-blockers and the anesthetics ketamine and propofol failed to reach statistical significance; however, the results did trend in that direction (χ = 3.8 and 3.4, respectively; P < .10 for both). The pharmacotherapeutic agents described in this study are an integral part of acute pediatric burn care, and yet there is variation in use of these medications among the centers. The differences in prescribing indicate that, for certain drugs, a range of approaches to pharmacotherapeutics is being used and suggest that evidence-based guidelines for administration of these agents need to be developed.

Reliability and validity of the Dutch version of the American Burn Association/Shriners Hospital for Children Burn Outcomes Questionnaire (5-18 years of age).

The American Burn Association/Shriners Hospital for Children Burn Outcomes Questionnaire (BOQ) is a self-administered questionnaire to monitor functional outcome after burns in children and adolescents. This study aimed to assess feasibility, reliability, and validity of the Dutch BOQ. The BOQ was adapted into Dutch and tested in a population of children and adolescents aged 5 to 15 years who were primary admissions to a Dutch or Belgian burn center (n = 6) during the period of March 2001 through February 2004. To assess validity, the Child Health Questionnaire (CHQ) and the EuroQol-5D (EQ-5D) were included. Response rate was 53% among parents (n = 145) and 48% among adolescents (n = 52). Internal consistency of the BOQ scales was good (Cronbach's alpha >0.7 in all but one scale). Test and retest results were similar; there were no significant differences between parents and adolescents in this respect. Expected high correlations between BOQ scales and conceptually equivalent CHQ and EQ-5D scales were found in eight of 12 comparisons. Eleven scales showed significant differences in the expected direction between children with a long length of stay versus those with a short length of stay. The Dutch BOQ can be used to evaluate functional outcome after burns in children aged 5 years and older. Our study showed that the Dutch BOQ is a feasible instrument with good reliability and validity.

The development, validation, and testing of a health outcomes burn questionnaire for infants and children 5 years of age and younger: American Burn Association/Shriners Hospitals for Children.

The 12-member American Burn Association/Shriners Hospitals for Children Outcomes Task Force was charged with developing a health outcomes questionnaire for use in children 5 years of age and younger that was clinically based and valid. A 55-item form was tested using a cross-sectional design on the basis of a range of 184 infants and children between 0 and 5 years of age at 8 burn centers, nationally. A total of 131 subjects completed a follow-up health outcomes questionnaire 6 months after the baseline assessment. A comparison group of 285 normal nonburn children was also obtained. Internal consistency reliability of the scales ranged from 0.74 to 0.94. Tests of clinical validity were significant in the hypothesized direction for the majority of scales for length of hospital stay, duration since the burn, percent of body surface area burned, overall clinician assessment of severity of burn injury, and number of comorbidities. The criterion validity of the instrument was supported using the Child Developmental Inventories for Burn Children in early childhood and preschool stages of development comparing normal vs abnormal children. The instrument was sensitive to changes over time following a clinical course observed by physicians in practice. The Health Outcomes Burn Questionnaire for Infants and Children 5 years of age and younger is a clinically based reliable and valid assessment tool that is sensitive to change over time for assessing burn outcomes in this age group.