• Lewis E Kazis, Austin F Lee, Mary Rose, Matthew H Liang, Nien-Chen Li, Xinhua S Ren, Robert Sheridan, Janet Gilroy-Lewis, Fred Stoddard, Michelle Hinson, Glenn Warden, Kim Stubbs, Patricia Blakeney, Walter Meyer, Robert McCauley, David Herndon, Tina Palmieri, Kate Mooney, David Wood, Frank Pidcock, Debra Reilly, Marc Cullen, Catherine Calvert, Colleen M Ryan, Jeffrey C Schneider, Marina Soley-Bori, and Ronald G Tompkins.
• Department of Health Law, Policy and Management, Center for the Assessment of Pharmaceutical Practices, Boston University School of Public Health, Boston, Massachusetts.
• JAMA Pediatr. 2016 Jun 1; 170 (6): 534-42.

ImportancePatient-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.ObjectiveTo describe multidimensional patient-reported outcomes among pediatric burn survivors younger than 5 years to establish benchmarks using recovery curve methods.Design, Setting, And ParticipantsProspective 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 MeasuresThe 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.ResultsA 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 RelevanceThis 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.

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