Lewis E Kazis1, Austin F Lee2, Mary Rose3, Matthew H Liang4, Nien-Chen Li1, Xinhua S Ren1, Robert Sheridan5, Janet Gilroy-Lewis5, Fred Stoddard5, Michelle Hinson5, Glenn Warden6, Kim Stubbs6, Patricia Blakeney3, Walter Meyer3, Robert McCauley3, David Herndon3, Tina Palmieri7, Kate Mooney8, David Wood9, Frank Pidcock10, Debra Reilly11, Marc Cullen12, Catherine Calvert13, Colleen M Ryan14, Jeffrey C Schneider15, Marina Soley-Bori1, Ronald G Tompkins5. 1. Department of Health Law, Policy and Management, Center for the Assessment of Pharmaceutical Practices, Boston University School of Public Health, Boston, Massachusetts. 2. Department of Mathematical Sciences, Bentley University, Waltham, Massachusetts3School of Insurance and Economics, University of International Business and Economics, Beijing, China4Department of Surgery, Massachusetts General Hospital, Boston. 3. Shriners Hospitals for Children, Galveston, Texas. 4. Massachusetts Veterans Epidemiology Research and Information Center, Boston. 5. Shriners Hospitals for Children, Boston, Massachusetts. 6. Shriners Hospitals for Children, Cincinnati, Ohio. 7. Shriners Hospitals for Children, Sacramento, California10Nebraska Medical Center, Omaha. 8. Shriners Hospitals for Children, Sacramento, California. 9. Department of Pediatrics, College of Medicine-Jacksonville, University of Florida, Jacksonville. 10. Kennedy Krieger Institute, Baltimore, Maryland. 11. Nebraska Medical Center, Omaha. 12. Children's Hospital of Michigan, Detroit. 13. North Carolina Jaycee Burn Center, Chapel Hill. 14. Department of Surgery, Massachusetts General Hospital, Boston7Shriners Hospitals for Children, Boston, Massachusetts15Harvard Medical School, Boston, Massachusetts. 15. Harvard Medical School, Boston, Massachusetts16Department of Physical Medicine and Rehabilitation, Spaulding Rehabilitation Hospital, Boston, Massachusetts.
Abstract
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.
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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Authors: Benjamin B Wang; Khushbu F Patel; Audrey E Wolfe; Shelley Wiechman; Kara McMullen; Nicole S Gibran; Karen Kowalske; Walter J Meyer; Lewis E Kazis; Colleen M Ryan; Jeffrey C Schneider Journal: Burns Date: 2021-04-20 Impact factor: 2.744
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Authors: Keri J S Brady; Gabrielle G Grant; Frederick J Stoddard; Walter J Meyer; Kathleen S Romanowski; Philip H Chang; Lynda E Painting; Laura A Fowler; Judith K Nelson; Perla Rivas; Kathryn Epperson; Robert L Sheridan; Michael Murphy; Ellen H O'Donnell; T Atilla Ceranoglu; R Christopher Sheldrick; Pengsheng Ni; Mary D Slavin; Petra Warner; Tina L Palmieri; Jeffrey C Schneider; Lewis E Kazis; Colleen M Ryan Journal: J Burn Care Res Date: 2020-01-30 Impact factor: 1.819