Spaulding and Collaborators Announce Commitment to Expand Access to LIBRE Profile with Mobile Application for Burn Community
Boston, MA – A new project plans to expand the Life Impact Burn Injury Recovery Evaluation (LIBRE) Profile into a publicly accessible mobile application. The unique academic, clinical, and community-based collaboration brings together Mass General Brigham members Spaulding Rehabilitation and Massachusetts General Hospital, partnered with Boston University, and the Phoenix Society for Burn Survivors. This effort provides a critical next step to translate the LIBRE Profile from a research product into a widely used app that will help track key areas of social recovery for those with burn injuries.
“Social participation is an important component of health-related quality of life and one of the key long-term outcomes after burn injury. However, we have lacked a validated tool to measure the impact of current burn recovery interventions. Burn survivors can experience important social participation limitations when integrating back into the community during the first two years and often continue to have challenges more than ten years after their injury,” said Jeffrey Schneider, MD, Director of the Boston-Harvard Burn Injury Model System and Medical Director of the Burn and Trauma Rehabilitation Program at Spaulding.
The proposed app is scheduled to launch in October 2024 and will provide burn survivors with direct access to the LIBRE Profile using advanced technology to help burn survivors navigate their own recovery. “The difficulty in social participation after a burn trauma has long been an identified challenge within the burn survivor community. This collaboration has begun to address these challenges by developing a validated accessible tool to help us share our lived experience with clinicians and it will also help us measure the impact of interventions that are available within the community-based programing at the Phoenix Society and many other local organizations,” said Amy Acton, Chief Executive Officer of the Phoenix Society for Burn Survivors.
This work is supported by the Shepherd Center* App Factory to Support Health and Function of People with Disabilities with grant funding from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR). The App Factory promotes the development of smartphone and tablet mobile applications to address high-priority health needs of people with disabilities.
The LIBRE Profile was initially developed with input from burn survivors under previously funded NIDILRR grants (#90DP0035, 90DPBU0001) and is a well-established, psychometrically sound assessment to measure and benchmark social participation in adults following burn injury across six domains: Family & Friends, Social Interactions, Social Activities, Work & Employment, Romantic Relationships, and Sexual Relationships.
The app will empower survivors to manage their own recovery and facilitate conversations with their clinicians and community service providers on social participation outcomes as part of their care and recovery. Ultimately, the LIBRE Profile App will serve as a springboard for the advancement of current interventions and work toward the development of evidence-based approaches to enhance social participation among burn survivors and become an integral component of burn injury rehabilitation. This app will contribute to impactful changes in policy and practice to improve the lives of individuals with disabilities.
*Development of this application was partly supported by the App Factory to Support Health and Function of People with Disabilities funded by a grant from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) in the U.S. Department of Health and Human Services to the Shepherd Center (Grant # 90DPHF0004).
About Spaulding Rehabilitation
A member of the Mass General Brigham Health System, Spaulding Rehabilitation includes Spaulding Rehabilitation Hospital, with a main campus in Charlestown the 2nd ranked in the nation for rehabilitation by U.S. News & World Report, along with Spaulding Rehabilitation Hospital Cape Cod, Spaulding Rehabilitation Hospital Cambridge, Spaulding Rehabilitation Nursing and Therapy Center Brighton, and over 25 outpatient sites throughout Eastern Massachusetts. An acclaimed teaching hospital of Harvard Medical School and home to the Department of Physical Medicine and Rehabilitation, Spaulding is recognized as a top residency program in the U.S. in the Doximity Residency Navigator. Spaulding also was recognized by the 2023 Disability Equality Index as a “Best Places to Work for Disability Inclusion.” For more information, visit www.spauldingrehab.org.
About Phoenix Society for Burn Survivors
For more than four decades, thousands of burn survivors, loved ones, healthcare professionals, and community allies have found comfort, support, and guidance—community—in the same place: Phoenix Society for Burn Survivors. A national non-profit serving as a leading connector for those affected by a burn injury, a hub for quality information and education, and a trusted advocate for all in the burn community and those living with a burn injury. Over 85 burn centers in North America participate in the Phoenix Society’s peer program SOAR providing access to peer support and resources to ease the return to their lives after a burn trauma. Based in Grand Rapids, Michigan, Phoenix Society takes its name from the legendary bird consumed by flame but rises again, more vibrant than before. For more information, visit www.phoenix-society.org.