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.

Self-perceptions of young adults who survived severe childhood burn injury.

The transition of pediatric burn survivors into adulthood is accompanied by a reformulation of their self-concept. To anticipate the need for and guide development of appropriate psychosocial interventions, this study examines how young adults who were burned as children perceive themselves and how this perception might affect their self-esteem. Eighty-two young adult burn survivors (45 male, 37 female) were assessed using the Tennessee Self-Concept Scale, 2nd edition (TSCS2) to determine how the participants perceive themselves and their interaction with society. To gain insight into the possible effects of these self-concept scores, relationships were analyzed between self-concept, a behavioral assessment (Young Adult Self-Report [YASR]), and a psychiatric symptom assessment (Structured Clinical Interview for DSM-IV Axis I Disorders [SCID I]). This group of burn survivors scored significantly lower in self-concepts, reflected in TSCS2 subscale scores of physical function, appearance, and sexuality, moral conduct, personal values, academics and work, and identity, than did the reference population. Pearson correlation coefficients showed that as moral, personal, family, and social aspects of self-concept decreased, clinical problems endorsed on the YASR subscales increased, including anxiety, somatic, attention, intrusive, and aggressive. Persons with lower self-concept scores on the TSCS2 personal, family, and social scales were more withdrawn on the YASR. Similarly, those with lower TSCS2 scores on the personal and family scales endorsed significantly more thought problems on the YASR. TSCS2 total self-concept, personal, and all of the supplementary scale scores were significantly lower for the group with an affective disorder. Those whose SCID I scores were consistent with a current anxiety disorder had significantly lower scores for the TSCS2 total self-concept and personal. Lower self-concept was associated with endorsement of SCID symptoms. In summary, the significantly lower self-concept scores on the TSCS2 physical scale are consistent with the physical disfigurement and handicaps common with major burn injuries, and a strong indication of this group's perception of the first impression made when interacting with others. The survivors seem to feel worthwhile within the contexts of family and friends. Although the major limitation of this study using the TSCS2 is the lack of a matched reference population to compare the burn survivors, the TSCS2 does help in gaining insight into the self-esteem issues of the burn survivor population.

Personality disorders in young adult survivors of pediatric burn injury.

OBJECTIVE: Life experience shapes personality and chronic trauma in childhood has been associated with risk for development of subsequent personality disorder. The purpose of this study is to determine the prevalence and character of personality disorders and traits in young adult survivors of severe pediatric burn injury. METHOD.: SCID-II and 16PF were completed by 98 young adult survivors of pediatric burn trauma. RESULTS: 48 (49%) met criteria for one or more personality disorders. The most frequent personality disorders were Paranoid (19.4%), Passive Aggressive (18.4%), Antisocial (17.3%), Depressive (11.2%), and Borderline (9.2%). Diagnosis with a personality disorder was associated with comorbid Axis I diagnoses and strongly correlated with personality traits as measured by the 16PF. CONCLUSIONS: Pediatric burn trauma is similar to other chronic traumas of childhood in significant correlation with subsequent personality disorder.

Psychosocial impact of childhood face burns: a multicenter, prospective, longitudinal study of 390 children and adolescents.

INTRODUCTION: This two-year longitudinal study of the health-related quality of life (HRQoL) of children with face burns was conducted in three regional pediatric burn care centers. Subjects were 390 children less than 18 years old at injury, admitted for burn treatment from September 2001 to December 2004. METHODS: HRQoL was assessed using the age-specific Burn Outcomes Questionnaire (BOQ) administered at scheduled time points following discharge up to 24 months thereafter. A psychosocial score was determined from domains of the BOQ, and these scores from children with both face burns and grafts were compared to those of children with non-face burns or with face burns but no face grafts. RESULTS: The parents of both the 0-4 year olds and the 5-18 year olds, who had facial burns and grafts, reported decreased BOQ psychosocial scores. When the teenagers (11-18 year olds) with facial burns and grafts filled out the BOQ themselves, they also reported low psychosocial scores compared to those with no facial burns with grafts. CONCLUSIONS: Severe face burn influences HRQoL in children. Additional psychosocial support is suggested to enhance recovery for patients with severe face burns and their families during the years following injury.

Psychiatric disorders in long-term adjustment of at-risk adolescent burn survivors.

This study investigated the point prevalence of psychiatric disorders among adolescent long-term burn survivors. Psychiatric symptoms and diagnoses were assessed in 50 youth (30 males, 20 females) characterized as troubled by their parent or guardian on the Child Behavior Checklist from a sample of 93 adolescent burn survivors. Those selected for further evaluation had a mean age at time of burn injury of 4.5 +/- 3.7 years and the mean age at time of diagnostic interview was 14.9 +/- 1.6 years. The average burn injury size among participants was 42 +/- 25% total body surface area. Psychiatric diagnoses were assessed with the computerized diagnostic interview schedule for children. Just over half of these youth (52%) met criteria for one or more psychiatric disorders and many had two or more diagnoses (22%). The most common psychiatric diagnoses were anxiety disorders (36%), followed by substance use (18%) and disruptive behavior disorders (14%). In comparison to previous reports, this study found lower rates of current psychiatric disorders in adolescent burn survivors, even though the participants were considered troubled by a parent. Although there were lower rates of anxiety disorders, especially posttraumatic stress disorder, there were higher rates of substance use disorders and a shift in type of behavior disorders in contrast to previous reports. Although there are limitations in such comparisons, this may indicate changes in the risk factors encountered by adolescent survivors of burn injury.

Relationships between the Quality of Life Questionnaire (QLQ) and the SF-36 among young adults burned as children.

OBJECTIVE: To examine the relationship between two measures that can be used to examine quality life among pediatric burn survivors. DESIGN: Prospective, correlational study. SETTING: Acute and rehabilitation pediatric burn care facility. PARTICIPANTS: Eighty young adult survivors of pediatric burns, who were 18-28 years of age, with burns of 30% or greater, and were at least 2 years after burn. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The SF-36 and the Quality of Life Questionnaire (QLQ) were used to assess participant's self-reported general health and long-term adjustment. RESULTS: Significant correlations (p< or =0.001) were found between the total quality of life score of the QLQ and the mental component scale of the SF-36. However, no significant correlations were found between the total quality of life score of the QLQ and the SF-36 physical component scale. CONCLUSIONS: Approximately 100,000 children are treated for burns annually, with a high percentage surviving, creating a challenge for health care professionals who need to prepare burn survivors with their psychosocial and physical well-being as adults. This study found that the SF-36 and QLQ are measuring somewhat different aspects of psychosocial and physical adjustment. It is recommended that both tools could be useful to the burn practitioner in assessing quality of life.

Differences in behavioral perceptions between young adult burn survivors and cross-informants.

The purpose of this study is to gain insight into the level of agreement, in terms of personal problems, between burn survivors and an informant with whom they have a close personal relationship. Participants in the study were 72 young adult burn survivors between the ages of 18 and 28 with a mean age of 20.9 +/- 2.6 years. There were 37 males and 35 females in the group. The mean total burn surface area was 55.34 +/- 19.9% with injuries occurring before the age of 18, a minimum of 2 years prior to the study with a mean of 14.3 +/- 4.9 years since burned. To assess this issue the participants completed The Young Adult Self-Report (YASR), and the informants completed The Young Adult Behavior Checklist (YABCL). In relationship to burn survivors, the informant group comprised 67% mothers, 3% fathers, and 30% domestic partners. Paired t-test and Pearson Correlations Coefficients were calculated to compare the differences and variance of the Total Problems Scale, Internalizing Scale and Externalizing Scale for the YABCL and YASR results. The family members of burn survivors reported more problems for their young adult relatives than did the informants of the reference population. In general, the YACBL scores were higher than and highly correlated to the YASR scores. Although there were not ethic differences in the YABCL and the YASR measures, the correlation between the YABCL and the YASR was excellent for Caucasian families but not good for Black and Hispanic families. This study supports concerns about the need for routine follow-up into adulthood for those individuals who were burned as children. This would seem to be especially critical for the female population.

Sleep onset insomnia symptoms during hospitalization for major burn injury predict chronic pain.

Both cross-sectional studies of chronic pain and sleep deprivation experiments suggest a bi-directional relationship between sleep and pain. Few longitudinal studies, however, have assessed whether acute insomnia following traumatic injury predicts the development of persistent pain. We sought to evaluate (1) whether in-hospital insomnia independently predicts long-term pain after burn injury and (2) whether in-hospital pain predicts future insomnia symptoms. We analyzed data on 333 subjects hospitalized for major burn injury (72.7% male; mean age=41.1+/-14.5years) who were participating in the multi-site, Burn Model System project. Subjects completed measures of health, function (SF-36), and psychological distress (Brief Symptom Inventory) while in hospital, at 6, 12, and 24months after discharge. Participants were categorized as either having or not having sleep onset insomnia at discharge. Linear mixed effects analyses revealed that persons reporting insomnia at discharge (40.5%) had significantly decreased improvement in pain and increased pain severity during long-term follow-up (p<0.001). More severe pain during the week preceding hospital discharge, time from injury, lack of college education and older age also contributed independent effects on chronic pain (p<0.05). In a reciprocal model (N=299), more severe pain during the week preceding discharge predicted increased rates of long-term sleep onset insomnia. In-hospital insomnia and pre-burn mental health symptoms were also highly significant predictors of insomnia. This study provides support for a long-term, prospective and reciprocal interaction between insomnia and pain. Future work should ascertain whether treatment of insomnia and pain during acute injury can prevent or minimize chronic pain.

Psychosocial care of persons with severe burns.

Treatment of people with burn injuries includes recovery of optimal function for survivors to fully participate in society, psychologically and physically. Increased likelihood of physical survival has led to greater concern for potential psychological morbidity for the burn survivor. Based on research and on many years of clinical experience in providing psychosocial care to burned children and adults, the authors outline their approach to assisting burn survivors and their families through the arduous process of recovery from admission through critical care, inpatient recuperation and reintegration upon hospital discharge. A philosophy of rehabilitation, a process that may occur for many months or years after patients' discharge from their acute hospitalization, is presented in the form of seven guidelines for working with burn survivors.

Acute pain at discharge from hospitalization is a prospective predictor of long-term suicidal ideation after burn injury.

OBJECTIVE: To determine the extent to which pain contributes to risk for suicidal ideation after burn injury. DESIGN: This longitudinal cohort study evaluated participants at discharge, 6 months, and 1 year after burn injury. SETTING: Inpatient rehabilitation units of multiple regional burn centers. PARTICIPANTS: Survivors of major burns (N=128). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Pain severity, assessed using the Medical Outcomes Study 36-Item Short-Form Health Survey bodily pain subscale, and passive and active suicidal ideation, assessed by self-report. RESULTS: At each time point, approximately one quarter to one third of the sample reported some form of suicidal ideation. In logistic regression analyses, pain severity at discharge was the sole consistent predictor of suicidal ideation at follow-up, with greater pain severity being associated with enhanced risk for both passive and active suicidal ideation. These associations were observed even after controlling for discharge mental health. CONCLUSIONS: These are the first findings to suggest an association between acute pain severity and the development and maintenance of suicidal ideation in burn patients. Further research in this area, including the study of improved pain management programs as a prophylaxis against suicidal ideation, may benefit those who are at elevated suicide risk as a consequence of burn injuries.

Physical and psychologic rehabilitation outcomes for young adults burned as children.

OBJECTIVE: To report physical and psychologic outcomes for young adult survivors of pediatric burns. DESIGN: Prospective, correlational study. SETTING: Acute and rehabilitation pediatric burn care facility. PARTICIPANTS: Eighty-three young adult survivors of pediatric burns, who were 18 to 28 years of age, with total body surface area (TBSA) burns of 30% or greater, and were at least 2 years postburn. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Physical outcomes were assessed by muscle strength tests, grip and pinch measurements, mobility levels, and self-care (activities of daily living) skills. Psychologic outcomes included behavioral problems, personality disorder, and incidence of psychiatric illness. An individually administered Structured Clinical Interview for Diagnosis, based on the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition, for psychiatric diagnosis, was used to assess mental health, and behavioral problems were assessed with the Young Adult Self-Report. Participants reported educational achievement, employment status, state of transition from family of origin (home) to independent living, and pair bonding. The Short-Form 36-Item Health Survey and the Quality of Life Questionnaire were used to assess each participant's self-reported general health and quality of life. RESULTS: The majority of subjects had physical and psychologic outcomes that were within the normal range when compared with age-mates who had not experienced burns. The areas that were most likely to be impaired involved peripheral strength (wrist and grip). These deficits affected some self-care skills and correlated with TBSA. Standardized diagnostic interviews showed that greater than 50% of subjects qualified for a psychiatric diagnosis, with anxiety disorders as the most frequently occurring diagnosis. There were few significant correlations of the physical measurements or self-care skills with the burn size, psychologic problems, or social outcomes, and none appeared to be clinically important. CONCLUSIONS: Most of the people in this sample were functioning physically and psychosocially within normal limits as they reached adulthood. Although they appeared to function well as measured by standardized assessments, there were indications of private suffering that suggested they may not be functioning at an optimal level. The findings suggest that rehabilitation professionals could improve outcomes by including programs to develop overall muscle strength in severely burned children and by addressing concerns related to anxiety and other symptoms of psychologic distress.

Assets and liabilities of the Burn Model System data model: a comparison with the National Burn Registry.

OBJECTIVES: To determine whether the Burn Model System (BMS) population is representative of the larger burn population and to investigate threats to internal and external validity in a multicenter longitudinal database of severe burns. DESIGN: Cohort data for the BMS project have been collected since 1994. Follow-up data have been collected at 6, 12, and 24 months postburn. The demographic and burn characteristics of the BMS population were compared with those of patients in the National Burn Registry (NBR). SETTING: The BMS, which collected data for these analyses from 5 regional burn centers in the United States, and the NBR dataset, which is a registry of information collected through the Trauma Registry of the American College of Surgeons and includes data from 70 hospitals in the United States and Canada. PARTICIPANTS: BMS study participants were severely burned patients treated at 1 of the 5 participating burn centers. We compared the BMS population with that of the NBR both in total and filtered to include only patients with comparable injuries. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Comparable demographic and burn characteristics contained in both the NBR and the 5-center BMS longitudinal database and baseline and follow-up distributions of demographic variables and burn characteristics in the BMS database. RESULTS: Although minor deviations in demographic distributions were found between the BMS and NBR and between discharge and follow-up populations, our results show that the BMS population sample is internally and externally valid and is adequate for answering research questions. CONCLUSIONS: Cohort studies examining long-term outcomes have the potential flaw of using a nonrepresentative study population. The BMS population was found to be sufficiently representative, but future analyses will require cautious and purposeful application of statistical adjustment strategies.

Symptoms of depression and anxiety as unique predictors of pain-related outcomes following burn injury.

BACKGROUND: The adverse consequences of burn injuries include pain and psychological distress, which show bidirectional associations. However, much of the existing research has relied on global measures of distress that do not separate distinct symptoms of anxiety and depression. PURPOSE: The purpose is to assess the prospective effects of anxiety and depression on pain and functional outcomes following burn injury. METHODS: This article describes a 2-year cohort study in patients hospitalized for serious burn injuries (assessments at discharge and 6-month, 1-year, and 2-year follow-up). Linear mixed effects analyses were conducted to model anxiety and depression's unique longitudinal effects; at each time point, depressive and anxiety symptoms were studied as predictors of subsequent changes in pain, fatigue, and physical function. RESULTS: When studied in separate prediction models, both depression and anxiety were strong prospective predictors of greater pain, more fatigue, and physical dysfunction at the subsequent time point (ps < .01). However, when both were included in a single model to study their unique effects, depressive symptoms (but not anxiety) emerged as a significant predictor of subsequent increases in pain and reductions in physical functioning, whereas anxiety (but not depression) predicted subsequent elevations in fatigue. CONCLUSIONS: These findings suggest potentially distinct effects of depression and anxiety and imply that assessment and early treatment of both depressive and anxiety symptoms may help improve a broad range of long-term pain-related outcomes following burn injury.

Psychological distress after major burn injury.

OBJECTIVE: To track the prevalence and stability of clinically significant psychological distress and to identify potentially modifiable in-hospital symptoms predictive of long-term distress (physical, psychological, and social impairment). METHOD: We obtained data from the Burn Model Systems project, a prospective, multisite, cohort study of major burn injury survivors. The Brief Symptom Inventory (BSI) was used to assess symptoms in-hospital (n = 1232) and at 6 (n = 790), 12 (n = 645), and 24 (n = 433) months post burn. Distress was examined dimensionally (BSI's Global Severity Index (GSI)) and categorically (groups formed by dichotomizing GSI: T score > or =63). Attrition was unrelated to in-hospital GSI score. RESULTS: Significant in-hospital psychological distress occurred in 34% of the patients, and clinically significant and reliable change in symptom severity by follow-up visits occurred infrequently. Principal components analysis of in-hospital distress symptoms demonstrated "alienation" and "anxiety" factors that robustly predicted distress at 6, 12, and 24 months, controlling for correlates of baseline distress. CONCLUSIONS: This is the largest prospective, multisite, cohort study of patients with major burn injury. We found that clinically significant in-hospital psychological distress was common and tends to persist. Two structural components of in-hospital distress seemed particularly predictive of long-term distress. Research is needed to determine if early recognition and treatment of patients with in-hospital psychological distress can improve long-term outcomes.

Prevalence of major psychiatric illness in young adults who were burned as children.

OBJECTIVE: To determine the prevalence of major psychiatric illness in a group of young adults who suffered significant burn injury as children. METHOD: A total of 101 persons (58 males, 43 females), aged 21 +/- 2.6 years, 14.0 +/- 5.4 years postburn of 54% +/- 20% total body surface area, were assessed for serious past and present mental illness by using a Structured Clinical Interview (SCID) for Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV) Axis I diagnoses. RESULTS: The SCID findings demonstrated that the prevalence of any Axis I major mental illness was 45.5% for the past month (current) and 59.4% for lifetime. These rates of overall disorder and the rates for most specific disorders were significantly higher than those found in the US population of comparable age. Logistic regression was used to examine demographic and burn characteristics as predictors of current and lifetime psychiatric disorder within the burn survivor sample. The female gender was significantly associated with higher rates of any current disorder. Other demographic and burn characteristics were not significantly related to the overall prevalence of current or lifetime disorder. Only a small number of those with disorders reported any current mental health treatment. CONCLUSIONS: Significant burn injury as a child leads to an increased risk of developing a major mental illness. Young adults who suffered major burn injury as children should be screened for these illnesses to initiate appropriate treatment.

The importance of family environment for young adults burned during childhood.

This study examined the role of family environment for young adult burn survivors making the transition from adolescence to adulthood. Ninety-three young adults who sustained large burns as children were asked to describe their families using the Family Environment Scale (FES). When examining the difference between burn survivors and the normative sample of the FES, burn survivors did not perceive their current family environment different than the normative group. However, burn survivors endorsed more items in the areas of achievement orientation and moral-religious emphasis, and less involvement in intellectual-cultural activities. We also examined the relationship between family characteristics on the FES and psychological adjustment of burn survivors as measured by the Young Adult Self-Report (YASR). Increased conflict on the FES was positively associated with YASR total problem score, internalizing behaviors, and externalizing behaviors. In addition, participation in recreational and social activities and organization both inversely correlated with YASR total problem score. In conclusion, increased family conflict was associated with decreased psychological adjustment of burn survivors as measured by the YASR total problem score.

Assessing potential suicide risk of young adults burned as children.

This study examines potential for suicide risk among young adults burned as children and examines characteristics associated with potential risk. Eighty-five young adults were administered the Suicide Probability Scale, which contains four clinical subscales: suicide ideation, hopelessness, negative self-evaluation, and hostility; the 16 Personality Factor Questionnaire; and the Family Environment Scale. Burn survivors reported more feelings of hopelessness in comparison to the reference group. High anxiety was positively associated with hopelessness, suicide ideation, hostility and negative self-evaluation whereas high extroversion was inversely related with hopelessness, negative self-evaluation, and hostility. Multiple regression analyses revealed emotional stability explained 29% of the variance, self-reliance 17% of the variance, and both 38% of the variance in relation to Suicide Probability Scale scores; and increased family conflict 12% of the variance. Results suggest that high anxiety, emotional reactivity, and family conflict correlate with increased potential suicide risk; whereas, extroversion correlates with decreased risk.

Quality of life of young adults who survived pediatric burns.

Ninety-five young adult pediatric burn survivors, ages 18 to 28, who were an average of 14 years after massive burn, were questioned about their quality of life. The Quality of Life Questionnaire (QLQ) by Evans and Cope was used to assess their long-term adjustment in diverse environmental settings. Results revealed burn survivors as a group rated their overall quality of life lower than the normal population. They also had differences from the normal population in some subdomains of the QLQ. When analyzed by sex, only one difference was seen with females rating their involvement in sports activities lower than males. Analysis of the effect of age showed that male burn survivors had improvements with their quality of life with age and the further they were after burn. In conclusion, the ability to detect distress among burn survivors will provide targets for related treatment and subsequent assessment of efficacy of intervention.

Efficacy of a short-term, intensive social skills training program for burned adolescents.

This study examined the efficacy of an intensive, short-term social skills training program in improving the psychosocial adjustment of burned adolescents. Sixty-four adolescents who had suffered a burn injury 2 years previously or longer and who were identified as having psychosocial difficulties (elevated behavioral problems and/or diminished competence) were assigned randomly to receive the treatment intervention or to serve as controls (32 in each group). The intervention was a social skills training curriculum provided in a small group residential format. Didactic and experiential techniques were used in a schedule of activities during a 4-day period. One year after the training program, the group who had received the treatment showed significantly more improvement than did the control group. The program appears to offer advantages to a sizeable group of pediatric burn survivors and indicates the need for further study of interventions to enhance psychosocial competence in the development of pediatric burn survivors.