title: Measuring the Social Impact of Burns on Survivors.
abstract: Many burn survivors experience social challenges throughout their recovery. Measuring the social impact of a burn injury is important to identify opportunities for interventions. The aim of this study is to develop a pool of items addressing the social impact of burn injuries in adults to create a self-reported computerized adaptive test based on item response theory. The authors conducted a comprehensive literature review to identify preexisting items in other self-reported measures and used data from focus groups to create new items. The authors classified items using a guiding conceptual framework on social participation. The authors conducted cognitive interviews with burn survivors to assess clarity and interpretation of each item. The authors evaluated an initial pool of 276 items with burn survivors and reduced this to 192 items after cognitive evaluation by experts and burn survivors. The items represent seven domains from the guiding conceptual model: work, recreation and leisure, relating to strangers, romantic, sexual, family, and informal relationships. Additional item content that crossed domains included using self-comfort and others' comfort with clothing, telling one's story, and sense of purpose. This study was designed to develop a large item pool based on a strong conceptual framework using grounded theory analysis with focus groups of burn survivors and their caregivers. The 192 items represent 7 domains and reflect the unique experience of burn survivors within these important areas of social participation. This work will lead to developing the Life Impact Burn Recovery Evaluation profile, a self-reported outcome measure.
authors.affiliation: From the *Boston University School of Public Health, Health & Disability Research Institute, Massachusetts; †Department of Health Law Policy and Management, Boston University School of Public Health, Center for the Assessment of Pharmaceutical Practices, Massachusetts; ‡Department of Surgery, Massachusetts General Hospital, Boston; §Harvard Medical School, Boston, Massachusetts; ‖Shriners Hospitals for Children-Boston®, Massachusetts; ¶Department of Physical Medicine and Rehabilitation, Spaulding Rehabilitation Hospital, Boston, Massachusetts; #Phoenix Society for Burn Survivors, Grand Rapids, Michigan; **Providence VA Medical Center, Rhode Island; and ††Brown University, Providence, Rhode Island.
authors.forename: Molly
authors.initials: M
authors.lastname: Marino
authors.forename: Marina
authors.initials: M
authors.lastname: Soley-Bori
authors.forename: Alan M
authors.initials: AM
authors.lastname: Jette
authors.forename: Mary D
authors.initials: MD
authors.lastname: Slavin
authors.forename: Colleen M
authors.initials: CM
authors.lastname: Ryan
authors.forename: Jeffrey C
authors.initials: JC
authors.lastname: Schneider
authors.forename: Amy
authors.initials: A
authors.lastname: Acton
authors.forename: Flor
authors.initials: F
authors.lastname: Amaya
authors.forename: Melinda
authors.initials: M
authors.lastname: Rossi
authors.forename: Rene
authors.initials: R
authors.lastname: Soria-Saucedo
authors.forename: Linda
authors.initials: L
authors.lastname: Resnik
authors.forename: Lewis E
authors.initials: LE
authors.lastname: Kazis
mesh_terms: D000328:Adult; D000368:Aged; D002056:Burns / Q000523:psychology*; D003020:Clothing; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D011788:Quality of Life; D012649:Self Concept; D057566:Self Report; D012919:Social Behavior; D017741:Survivors / Q000523:psychology*; D055815:Young Adult