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.

Two-year follow-up of outcomes related to scarring and distress in children with severe burns.

PURPOSE: We assessed the perception of scarring and distress by pediatric burn survivors with burns covering more than one-third of total body surface area (TBSA) for up to 2 years post-burn. METHODS: Children with severe burns were admitted to our hospital between 2004 and 2012, and consented to this IRB-approved-study. Subjects completed at least one Scars Problems and/or Distress questionnaire between discharge and 24 months post burn. Outcomes were modeled with generalized estimating equations or using mixed linear models. Significance was accepted at p < 0.01. RESULTS: Responses of 167 children with a mean age of 7 ± 5 years and burns covering an average 54 ± 14% of TBSA were analyzed. Significant improvements over the 2-year period were seen in reduction of pain, itching, sleeping disturbance, tightness, range of motion, and strength (p < 0.01). There was a significantly increased persistent desire to hide the scarred body areas over time (p < 0.01). The perception of mouth scarring, inability to portray accurate facial expressions, and skin coloration did not improve over the follow-up period. CONCLUSIONS: According to self-assessment questionnaires, severely burned children exhibit significant improvements in their overall perception of scarring and distress. However, these patients remain self-conscious with respect to their body image even 2 years after burn injury. Implications for Rehabilitation According to self-assessment questionnaires, severely burned children perceive significant improvements in scarring and distress during the first 2 years post burn. Significant improvements were seen in reduction of pain, itching, sleeping disturbances, tightness, range of motion, and strength (p < 0.01). Burn care providers should improve the treatment of burns surrounding the mouth that with result in scarring, and develop strategies to prevent skin discoloration. Careful evaluation of pain and sleeping disorders during the first year post burn are warranted to improve the patient rehabilitation. Overall, significantly more female patients expressed a persistent desire to hide their scarred body areas. The rehabilitation team should provide access to wigs or other aids to pediatric burn survivors to address these needs.

Quality of Life of Young Adult Survivors of Pediatric Burns Using World Health Organization Disability Assessment Scale II and Burn Specific Health Scale-Brief: A Comparison.

The objective was to determine long-term psychological distress and quality of life (QOL) in young adult survivors of pediatric burns using the World Health Organization Disability Assessment Scale II (WHODAS) and the Burn Specific Health Scale-Brief (BSHS-B). Fifty burn survivors 2.5 to 12.5 years postburn (16-21.5 years old; 56% male, 82% Hispanic) completed the WHODAS and BSHS-B. The WHODAS measures health and disability and the BSHS-B measures psychosocial and physical difficulties. Scores were calculated for each instrument, and then grouped by years postburn, TBSA, sex, burn age, and survey age to compare the effects of each. Next, the instruments were compared with each other. The WHODAS disability score mean was 14.4 ± 2.1. BSHS-B domain scores ranged from 3 to 3.7. In general, as TBSA burned increased, QOL decreased. Female burn survivors, survivors burned prior to school entry, and adolescents who had yet to transition into adulthood reported better QOL than their counterparts. In all domains except Participation, the WHODAS consistently identified more individuals with lower QOL than the BSHS-B. Young adult burn survivors' QOL features more disability than their nonburned counterparts, but score in the upper 25% for QOL on the BSHS-B. This analysis revealed the need for long-term psychosocial intervention for survivors with larger TBSA, males, those burned after school entry, and those transitioning into adulthood. Both instruments are useful tools for assessing burn survivors' QOL and both should be given as they discern different individuals. However, the WHODAS is more sensitive than the BSHS-B in identifying QOL issues.

Family orientation to a pediatric burn ICU hospital using a DVD.

Increasing numbers of children with burns from diverse geographic locations in the United States, Mexico, and Central and South America are treated at a specialty children's burn hospital in the Southwest. Patients and families from diverse cultural and educational backgrounds arrive at all hours of the day and evening, seven days a week. The diversity of the population arriving at the burn intensive care unit (BICU) coupled with the enormous stress that many families experience drove the need for a concise, standardized means of orientation to the hospital setting. The purpose of this study was to evaluate parent knowledge of locations in the hospital and satisfaction with an educational DVD for orientation to the hospital setting. Parents (N = 82) completed satisfaction surveys within 24 to 48 hours of the child's admission. The majority of participants were Spanish-speaking females from Mexico. Participants reported the DVD was beneficial in providing relevant information about the hospital setting and reported high satisfaction.

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.