Adults 18 years of age or older with burn injury ≥ 5% total body surface area or to critical area(s) (e.g., hands, feet, face, genitals).
Studies are underway to develop a questionnaire to assess the impact of burn injury on child health in preschool and school-aged children. Actively enrolling; learn more here.
The LIBRE profile measures different aspects of an individual's ability to engage in everyday social situations across six social participation domains identified as important to people with burn injury. Each of the domains can be administered individually or in combination. Each domain uses a unique scoring metric; therefore, standardized scores from different domains are not comparable.
The burn survivor reads and answers the items independently. Responses can be recorded using paper and pencil, and entered into a data collection platform. Alternatively, an on-line survey administration tool can be created to enter LIBRE Profile Short Form (SF) responses directly into a database, or SFs can be administered using REDCap.
Item responses are then summed to obtain raw scores for each domain, which can then be converted to a standardized score using a score transformation table.
Items ask how the burn injury may impact family relationships and socializing with the family. Perceptions include how a burn survivor’s appearance may affect the individuals’ ability to interact with family members. Included are both the comfort level and activities one participates in with family and friends, in addition to level of family support.
Number of Items: 24
Items ask about the ability of burn survivors to interact with people and situations that are familiar; commonly reported problems for burn survivors are difficulty and anxiety in social situations.
Number of Items: 25
Items ask about the burn survivors’ perceptions of accomplishing daily activities and their ability to participate with others in these activities. These activities range from involvement in organized social events in the community (such as sporting events), informal gatherings with friends and associates, to parties with peers from work or other friends.
Number of Items: 15
Items ask about relationship with coworkers, satisfaction with one’s work and the relationship with one’s peers on the job. In addition, the domain includes content related to the performance of work, work responsibilities, energy on the job and work absences due to health problems related to the burn injury.
Number of Items: 19
Items ask about communication, the sharing of problems with a romantic partner, emotional closeness and comfort talking about problems, and enjoyment of the partner. The scale also identifies the conduct of social activities that can be both intimate and emotional.
Number of Items: 28
Items are specific to sexual functioning and the physical act of sex and how that might impact a relationship for the burn survivor.
Number of Items: 15
On August 23, 2023, the Rehabilitation Outcomes Center at Spaulding (ROCS) sponsored the International Life Impact Burn Recovery Evaluation (LIBRE) Profile Collaboration webinar. The LIBRE Profile measures different aspects of an individual's ability to engage in everyday social situations across six social participation domains identified as important to people with burn injury.
The webinar highlighted international efforts to translate the LIBRE Profile. Presenters included lead researchers from Mexico, Australia, Japan and Taiwan, as detailed below.
Kazis LE, Marino M, Ni P, Soley Bori M, Amaya F, et al. Development of the life impact burn recovery evaluation (LIBRE) profile: assessing burn survivors' social participation. Qual Life Res. 2017 May 10; PubMed PMID: 28493205.
Dore EC, Marino M, Ni P, Lomelin-Gascon J, Sonis L, Amaya F, Ryan CM, Schneider JC, Jette AM, Kazis LE. Reliability & validity of the LIBRE Profile. Burns. 2018 Nov; 44(7):1750-1758. PMID: 30075970.
Marino M, Soley-Bori M, Jette AM, Slavin MD, Ryan CM, Schneider JC, Resnik L, Acton A, Amaya F, Rossi M, Soria-Saucedo R. Development of a Conceptual Framework to Measure the Social Impact of Burns. J Burn Care Res. 2016
Slavin MD, Ryan CM, Schneider JC, Acton A, Amaya F, Saret C, Ohrtman E, Wolfe A, Ni P, Kazis LE. Interpreting Life Impact Burn Recovery Evaluation Profile Scores for Use by Clinicians, Burn Survivors, and Researchers. J Burn Care Res. 2021 02 03; 42(1):23-31. PMID: 32556266
The LIBRE Profile was developed in collaboration with Boston University School of Public Health, the Boston-Harvard Burn Injury Model System, Mass General Brigham and the Phoenix Society for Burn Survivors, with funding by the National Institute on Disability, Independent Living and Rehabilitation Research, Award Number 90DP0055. The LIBRE Profile uses the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) as a conceptual framework. The LIBRE Profile was developed specifically to measure social participation in persons with a burn injury.