Life Impact Burn Recovery Evaluation Profile (LIBRE)
Attempting to return to everyday life after a burn injury can be difficult, stressful and emotionally challenging. While traditional rehabilitation strategies for burn survivors focus on physical recovery, the Life Impact Burn Recovery Evaluation (LIBRE) Project focuses on the impact burn injuries have on patients’ social life.
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.
Profile Domains
Relationships with Family & Friends
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
Social Interaction
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
Social Activities
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
Work & Employment
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
Romantic Relationships
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
Sexual Relationships
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
International LIBRE Profile Collaboration Webinar
The International Consortium for translations of the LIBRE Profile is conducting translations with our colleagues in Mexico, Taiwan, Japan, and Australia. As of summer 2023, both forward and backward translations of the LIBRE Profile assessments have been completed. Completed translations have undergone face validity checks with cognitive debriefing sessions for the Spanish, Chinese, Australian, and Japanese translations. Baseline administrations of the LIBRE Profile in Spanish and Chinese are well underway using web-based electronic administrations, telephone and mail for concurrent validation checks using the WHODAS and the VR-12. Test-retest reliability assessments are almost complete for the Spanish version with positive results. Analysis of data collected has begun for the test-retest and validation studies for the Spanish and Chinese versions of the LIBRE Profile. The Australian and Japan translations continue to be field tested. The plans for this consortium are to track burn recovery among these countries for future use as part of a global program for providing the LIBRE Profile in the communities of each country.
In August 2023, the Rehabilitation Outcomes Center at Spaulding (ROCS) sponsored an International LIBRE Profile Collaboration webinar. The webinar highlighted international efforts to translate the LIBRE Profile. Presenters included lead researchers from Mexico, Australia, Japan and Taiwan, as detailed below.
Introducing the LIBRE Profile: Lewis E. Kazis, ScD, Professor of Health Policy and Management Director, Health Outcomes Unit and Center for the Assessment of Pharmaceutical Practices (CAPP) (Est. 2000), Department of Health Law, Policy and Management, Boston University School of Public Health, Boston, MA. Research Director, Rehabilitation Outcomes Center at Spaulding (ROCS), Spaulding Rehabilitation,
Translation and Use of the LIBRE Profile in Mexico: Mariana Morales Garcia, MD, PM&R Physician, Burn Rehabilitation Service, National Burn Research Center, Mexico City, Mexico
Translation and Use of the LIBRE Profile in Australia: Dale Edgar, BPhty (Hons), PhD, Senior Physiotherapist, AKG Research Coordinator, Safety and Quality Unity, Armadale Kalamunda Group Health Service, Armadale Hospital, Perth, Australia
Translation and Use of the LIBRE Profile in Japan: Yukio Sato, MD, PhD, Assistant Professor, Department of Emergency & Critical Care Medicine, Keio University School of Medicine, Tokyo, Japan
Translation and Use of the LIBRE Profile in Taiwan: Hui-Fu “Jeff ” Huang, MD, PhD, President, Taiwan Society for Burn Injuries and Wound Healing, Attending Plastic Surgeon/Director Skin Bank, National Taiwan University Hospital, Taipei, Taiwan
Dore E, 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. 2018 Nov; 44(7):1750-1758. doi: 10.1016/j.burns.2018.04.001 PMID: 30075970
Ni P, Marino M, Dore E, Sonis L, Ryan CM, Schneider JC, Jette AM, Kazis LE. Extreme response style bias in burn survivors.PLos One. 2019 May 6;14(5):e0215898. doi: 10.1371/journal.pone.0215898. eCollection 2019. PMID: 31059527
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.
