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Original Investigation |

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

Lewis E. Kazis, ScD1; Austin F. Lee, PhD2,3,4; Mary Rose, PsyD5; Matthew H. Liang, MD, MPH6; Nien-Chen Li, MPH, MA1; Xinhua S. Ren, PhD1; Robert Sheridan, MD7; Janet Gilroy-Lewis, RN7; Fred Stoddard, MD7; Michelle Hinson, RN7; Glenn Warden, MD8; Kim Stubbs, RN8; Patricia Blakeney, PhD5; Walter Meyer III, MD5; Robert McCauley, MD5; David Herndon, MD5; Tina Palmieri, MD9,10; Kate Mooney, RN9; David Wood, MD11; Frank Pidcock, MD12; Debra Reilly, MD10; Marc Cullen, MD13; Catherine Calvert, PhD14; Colleen M. Ryan, MD4,7,15; Jeffrey C. Schneider, MD15,16; Marina Soley-Bori, MA1; Ronald G. Tompkins, MD, ScD7
[+] Author Affiliations
1Department of Health Law, Policy and Management, Center for the Assessment of Pharmaceutical Practices, Boston University School of Public Health, Boston, Massachusetts
2Department of Mathematical Sciences, Bentley University, Waltham, Massachusetts
3School of Insurance and Economics, University of International Business and Economics, Beijing, China
4Department of Surgery, Massachusetts General Hospital, Boston
5Shriners Hospitals for Children, Galveston, Texas
6Massachusetts Veterans Epidemiology Research and Information Center, Boston
7Shriners Hospitals for Children, Boston, Massachusetts
8Shriners Hospitals for Children, Cincinnati, Ohio
9Shriners Hospitals for Children, Sacramento, California
10Nebraska Medical Center, Omaha
11Department of Pediatrics, College of Medicine–Jacksonville, University of Florida, Jacksonville
12Kennedy Krieger Institute, Baltimore, Maryland
13Children’s Hospital of Michigan, Detroit
14North Carolina Jaycee Burn Center, Chapel Hill
15Harvard Medical School, Boston, Massachusetts
16Department of Physical Medicine and Rehabilitation, Spaulding Rehabilitation Hospital, Boston, Massachusetts
JAMA Pediatr. 2016;170(6):534-542. doi:10.1001/jamapediatrics.2015.4722.
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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.

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Predicted Recovery Curves for Pediatric Burn Survivors Younger Than 5 Years

Predicted recovery curves are shown with scores on the Burn Outcomes Questionnaires for children aged 0 to 5 years (BOQ0-5) in the domains of play (A), language (B), fine motor skills (C), gross motor skills (D), emotional behavior (E), family functioning (F), pain/itching (G), appearance (H), satisfaction with care (I), and worry/concern (J).

aP < .05 for significant increase exponentially over time.

bP < .001 for significant increase exponentially over time.

cP < .01 for significant increase exponentially over time.

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