Lewis E Kazis1, Molly Marino2, Pengsheng Ni3, Marina Soley Bori1, Flor Amaya1, Emily Dore1, Colleen M Ryan4,5,6, Jeff C Schneider5,7, Vivian Shie7, Amy Acton8, Alan M Jette3. 1. Department of Health Law, Policy, and Management, Center for the Assessment of Pharmaceutical Practices (CAPP), Boston University School of Public Health, Boston, MA, USA. 2. Health & Disability Research Institute, Boston University School of Public Health, 715 Albany Street, T5W, Boston, MA, 02118, USA. memarino@bu.edu. 3. Health & Disability Research Institute, Boston University School of Public Health, 715 Albany Street, T5W, Boston, MA, 02118, USA. 4. Department of Surgery, Massachusetts General Hospital, Boston, MA, USA. 5. Harvard Medical School, Boston, MA, USA. 6. Shriners Hospitals for Children -Boston®, Boston, MA, USA. 7. Department of Physical Medicine and Rehabilitation, Spaulding Rehabilitation Hospital, Boston, MA, USA. 8. The Phoenix Society for Burn Survivors, Grand Rapids, MI, USA.
Abstract
PURPOSE: Measuring the impact burn injuries have on social participation is integral to understanding and improving survivors' quality of life, yet there are no existing instruments that comprehensively measure the social participation of burn survivors. This project aimed to develop the Life Impact Burn Recovery Evaluation Profile (LIBRE), a patient-reported multidimensional assessment for understanding the social participation after burn injuries. METHODS: 192 questions representing multiple social participation areas were administered to a convenience sample of 601 burn survivors. Exploratory factor analysis and confirmatory factor analysis (CFA) were used to identify the underlying structure of the data. Using item response theory methods, a Graded Response Model was applied for each identified sub-domain. The resultant multidimensional LIBRE Profile can be administered via Computerized Adaptive Testing (CAT) or fixed short forms. RESULTS: The study sample included 54.7% women with a mean age of 44.6 (SD 15.9) years. The average time since burn injury was 15.4 years (0-74 years) and the average total body surface area burned was 40% (1-97%). The CFA indicated acceptable fit statistics (CFI range 0.913-0.977, TLI range 0.904-0.974, RMSEA range 0.06-0.096). The six unidimensional scales were named: relationships with family and friends, social interactions, social activities, work and employment, romantic relationships, and sexual relationships. The marginal reliability of the full item bank and CATs ranged from 0.84 to 0.93, with ceiling effects less than 15% for all scales. CONCLUSIONS: The LIBRE Profile is a promising new measure of social participation following a burn injury that enables burn survivors and their care providers to measure social participation.
PURPOSE: Measuring the impact burn injuries have on social participation is integral to understanding and improving survivors' quality of life, yet there are no existing instruments that comprehensively measure the social participation of burn survivors. This project aimed to develop the Life Impact Burn Recovery Evaluation Profile (LIBRE), a patient-reported multidimensional assessment for understanding the social participation after burn injuries. METHODS: 192 questions representing multiple social participation areas were administered to a convenience sample of 601 burn survivors. Exploratory factor analysis and confirmatory factor analysis (CFA) were used to identify the underlying structure of the data. Using item response theory methods, a Graded Response Model was applied for each identified sub-domain. The resultant multidimensional LIBRE Profile can be administered via Computerized Adaptive Testing (CAT) or fixed short forms. RESULTS: The study sample included 54.7% women with a mean age of 44.6 (SD 15.9) years. The average time since burn injury was 15.4 years (0-74 years) and the average total body surface area burned was 40% (1-97%). The CFA indicated acceptable fit statistics (CFI range 0.913-0.977, TLI range 0.904-0.974, RMSEA range 0.06-0.096). The six unidimensional scales were named: relationships with family and friends, social interactions, social activities, work and employment, romantic relationships, and sexual relationships. The marginal reliability of the full item bank and CATs ranged from 0.84 to 0.93, with ceiling effects less than 15% for all scales. CONCLUSIONS: The LIBRE Profile is a promising new measure of social participation following a burn injury that enables burn survivors and their care providers to measure social participation.
Entities:
Keywords:
Burns; Computerized adaptive test; Item response theory; Social reintegration
Authors: Shawn T Mason; Peter Esselman; Robert Fraser; Katherine Schomer; Anjali Truitt; Kurt Johnson Journal: J Burn Care Res Date: 2012 Jan-Feb Impact factor: 1.845
Authors: Karon F Cook; Sally E Jensen; Benjamin D Schalet; Jennifer L Beaumont; Dagmar Amtmann; Susan Czajkowski; Darren A Dewalt; James F Fries; Paul A Pilkonis; Bryce B Reeve; Arthur A Stone; Kevin P Weinfurt; David Cella Journal: J Clin Epidemiol Date: 2016-03-04 Impact factor: 6.437
Authors: Peter C Esselman; Shelley Wiechman Askay; Gretchen J Carrougher; Dennis C Lezotte; Radha K Holavanahalli; Gina Magyar-Russell; James A Fauerbach; Loren H Engrav Journal: Arch Phys Med Rehabil Date: 2007-12 Impact factor: 3.966
Authors: Benjamin Levi; Casey T Kraft; Gabriel D Shapiro; Nhi-Ha T Trinh; Emily C Dore; James Jeng; Austin F Lee; Amy Acton; Molly Marino; Alan Jette; Elizabeth A Armstrong; Jeffrey C Schneider; Lewis E Kazis; Colleen M Ryan Journal: J Burn Care Res Date: 2018-10-23 Impact factor: 1.845
Authors: Emily A Ohrtman; Gabriel D Shapiro; Audrey E Wolfe; Nhi-Ha T Trinh; Pengsheng Ni; Amy Acton; Mary D Slavin; Colleen M Ryan; Lewis E Kazis; Jeffrey C Schneider Journal: Burns Date: 2020-09-15 Impact factor: 2.744
Authors: Mary D Slavin; Colleen M Ryan; Jeffrey C Schneider; Amy Acton; Flor Amaya; Cayla Saret; Emily Ohrtman; Audrey Wolfe; Pengsheng Ni; Lewis E Kazis Journal: J Burn Care Res Date: 2021-02-03 Impact factor: 1.845
Authors: Gabrielle G Grant; Keri J S Brady; Frederick J Stoddard; Walter J Meyer; Kathleen S Romanowski; Philip H Chang; Lynda E Painting; Laura A Fowler; Judith K Nelson; Khushbu F Patel; R Christopher Sheldrick; Alice Carter; Robert L Sheridan; Mary D Slavin; Petra Warner; Tina L Palmieri; Jeffrey C Schneider; Lewis E Kazis; Colleen M Ryan Journal: Burns Date: 2021-02-25 Impact factor: 2.744
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
Authors: Sara Cartwright; Cayla Saret; Gabriel D Shapiro; Pengsheng Ni; Robert L Sheridan; Austin F Lee; Molly Marino; Amy Acton; Lewis E Kazis; Jeffrey C Schneider; Colleen M Ryan Journal: Burns Date: 2019-03-06 Impact factor: 2.609
Authors: Cayla J Saret; Pengsheng Ni; Molly Marino; Emily Dore; Colleen M Ryan; Jeffrey C Schneider; Lewis E Kazis Journal: J Burn Care Res Date: 2019-08-14 Impact factor: 1.819
Authors: Emily C Dore; Molly Marino; Pengsheng Ni; Julieta Lomelin-Gascon; Lily Sonis; Flor Amaya; Colleen M Ryan; Jeffrey C Schneider; Alan M Jette; Lewis E Kazis Journal: Burns Date: 2018-07-31 Impact factor: 2.609
Authors: Emily A Ohrtman; Gabriel D Shapiro; Laura C Simko; Emily Dore; Mary D Slavin; Cayla Saret; Flor Amaya; J Lomelin-Gascon; Pengsheng Ni; Amy Acton; Molly Marino; Lewis E Kazis; Colleen M Ryan; Jeffrey C Schneider Journal: J Burn Care Res Date: 2018-10-23 Impact factor: 1.819