Abstract
Advances in the field of burn care have resulted in increased survival rates among children with burns to 96.8%. Despite much progress and innovation, complete resolution of scars or other “visible differences” is rarely obtainable after serious burn injuries. Among youth recovering from burn injuries, estimates of the proportion having visible differences ranges from 10–30%. Since little is known about the course of body image distress over time, the current study examined the prevalence of appearance concerns (AC) in 11–18 year old survivors of burn injury and their parents. The Multi-Center Benchmarking study enrolled patients recovering from burn injuries >20% total body surface area (TBSA) and/or burns to critical areas such as face, hands, or genitals. The study assessed function in 12 different physical and psychosocial domains using the Burn Outcomes Questionnaire (BOQ). Separate BOQs were created for the parents of children aged 5–18 years and for patients aged 11–18 years. Each BOQ subscale is standardized using a z score transformation with a mean of 50 and a SD of 10, and scores are recoded to an “at risk” vs “not at risk” classification based upon whether they are 1+ SD below 50. This study examined changes in risk scores over time for the AC subscale for both the parent and youth reports. BOQ forms were available for a total of 107 parents and youth at baseline (1st clinic visit after hospital discharge) and 12 months. In this subsample, the mean patient age at baseline was 14.1 years and the mean TBSA was 35.5%. At baseline, 22.3% of parents and 18.5% of patients in the sample had AC scores in the at-risk range and, at the 1-year follow up, 22.6% and 13.9% (respectively) were at risk. For parents, at the initial visit, AC ranked 5th in prevalence among the 12 BOQ subscales, but, at the 1-year follow-up, this area was ranked as the most problematic. For youth, AC rank increased from 9th to 3rd. There was a significant relationship between AC and TBSA at baseline for both parents and youth (p = 0.007 and p = 0.005). This relationship was still significant at 1 year for parents (p = 0.013), but not for youth (p = 0.708). There was no significant association between location of burn and AC as rated by parents and patients. Results from this study supported previous findings that appearance concerns are common among pediatric survivors of burn injury. This study added to the existing literature by demonstrating that AC appear to persist and become more salient over time for both patients and their parents. This study shows that, following hospital discharge, AC quickly emerge as one of the most problematic areas for both parents and patients, suggesting the need to prioritize future research on the best time to introduce targeted assessments and interventions for AC.
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