A new app developed by BU researchers and collaborators helps burn survivors navigate life after injury.
By Mia Knezevic and Maureen Stanton
A generation ago, surviving a devastating burn injury was far from certain. Advances in emergency medicine, critical care, and reconstructive surgery have transformed that reality, allowing people with even the most severe burns to survive injuries that once would have been fatal. But survival is only the beginning. For many burn survivors, returning to work, rebuilding relationships, and navigating everyday social interactions remain among the most difficult parts of recovery.
To help address those challenges, researchers from Boston University, Spaulding Rehabilitation Hospital, Massachusetts General Hospital, Harvard Medical School and the Phoenix Society for Burn Survivors developed LIBRE GO!, a smartphone app that allows burn survivors to assess their social recovery, monitor changes over time, and connect with evidence-based resources. A new study published in the Journal of Burn Care & Research describes the app’s development, and pilot testing.
“Inside rehabilitation, survivors are surrounded by clinicians who understand burn injuries and by others facing similar experiences,” says Mary Slavin, PT, PhD, a Research Assistant Professor of Health Law, Policy & Management at Boston University School of Public Health, and a co-director of Dissemination and Education for the Rehabilitation Outcomes Center at Spaulding Rehabilitation (ROCS). “Once they return to their communities, that support network disappears.”
That transition can make everyday interactions, such as reconnecting with friends, dating, and navigating through society, unexpectedly difficult.
Huan Deng, PhD, an occupational therapist and rehabilitation researcher at Spaulding Rehabilitation Hospital and Harvard Medical School, has seen that transition throughout her work with burn survivors.
“People may look different after a severe burn injury,” Deng says. “Going back into the community, spending time with family and friends, interacting with strangers—those can all become difficult.” Long-term research confirms those experiences. Nearly seven in 10 burn survivors report some level of discomfort participating in social activities two years after their injury, with many still facing those challenges more than a decade later.
Yet for years, clinicians had no reliable way to measure those aspects of recovery or identify people who might benefit from additional support.
Measuring What Matters Most
Addressing that gap brought together an interdisciplinary team led by Lewis Kazis, ScD, of Boston University School of Public Health, alongside Pengsheng Ni, MD, MPH, of BU School of Public Health; Jeffrey Schneider, MD, of Mass General Brigham and Harvard Medical School; and Colleen Ryan, MD, a burn surgeon at Shriners Hospital for Children and professor at Harvard Medical School.
Working closely with burn survivors, they developed the Life Impact Burn Recovery Evaluation (LIBRE) Profile, a validated patient-reported outcome measure designed specifically to assess social participation among adult burn survivors. Published in 2017, the LIBRE Profile provided a new way to understand and measure the social dimensions of burn recovery.
“We have an adage in the measurement world that if you can’t measure it you can’t change it,” says Kazis, Emeritus Professor of Health Law, Policy & Management at Boston University School of Public Health, and principal investigator of the LIBRE project. “So much of this becomes a question of whether you can pinpoint the needs of a burn survivor and then begin to provide them—and clinicians—with that information.”
The LIBRE Profile assessment measures six areas that survivors identified as central to rebuilding their lives, from relationships, social interactions, and social activities to work, romantic relationships, and intimacy. After completing the assessment, users receive personalized scores that help identify areas where additional support may be helpful.
To make the paper-based assessment practical for everyday use, researchers partnered with Boston University’s Software & Application Innovation Lab (SAIL) at the Hariri Institute to develop an adaptive web-based platform. Using computerized adaptive testing (CAT) and Item Response Theory (IRT), the platform tailors questions to each user based on their previous responses, much like adaptive standardized exams. This approach accurately measures social recovery with far fewer questions than the original survey, resulting in a faster, more personalized assessment experience. However, despite these advances, the web-based assessment remained largely confined to research studies and specialty clinics, limiting its accessibility and broader real-world use.
“We wondered, ‘Is there a way to get it to more people so they have it in their own hands?’” Slavin says.
That question led to LIBRE GO!
From Research Tool to Smartphone App
Developed through a continued collaboration between the LIBRE research team and BU SAIL, with support from the Shepherd Center and the National Institute on Disability, Independent Living, and Rehabilitation Research, the app brings the validated assessment directly to burn survivors wherever they live.
Rather than waiting for a clinic appointment, users can complete the assessment privately on their phones, monitor changes in their recovery over time, and receive personalized feedback. The app also provides educational information about burn recovery and connects users directly with resources from the Phoenix Society for Burn Survivors, including peer support, educational materials, online communities, and other programs.
In the pilot study, participants found LIBRE GO! easy to use and helpful for monitoring their recovery, supporting the feasibility of delivering long-term rehabilitation through a mobile app.
Input from burn survivors helped shape LIBRE GO! as a tool they could use to better understand and guide their own recovery, says Jeffrey C. Schneider, MD, Chief, Comprehensive Rehabilitation and Stroke Divisions, Department of PM&R, Mass General Brigham; Medical Director, Burns and Trauma, Spaulding Rehabilitation; Co-Director, Rehabilitation Outcomes Center at Spaulding; and Associate Professor, Harvard Medical School.
“We wanted to make the app simple, so that people living with a burn injury can access it themselves and assess their own function and help direct their own care and their own recovery.”
Connecting Survivors to Support
Many of the issues survivors face — including body image, confidence, intimacy, and social participation — can be difficult to discuss during a medical appointment. Completing the assessment independently via LIBRE GO! allows users to reflect on their experiences before deciding whether to seek additional support.
For Schneider, connecting survivors with one another is just as important as providing clinical information.
“Sometimes other people living with a burn injury might be the best resource,” he says.
That support can be especially valuable for people who live far from specialized burn centers or who have never met another burn survivor. Whether someone lives in Boston or a rural community hundreds of miles from the nearest burn center, the app provides a pathway to information, encouragement, and a community of people who understand the challenges of recovery.
Redefining Burn Care
LIBRE GO! reflects a broader shift in burn care. As advances in medicine continue to improve survival, researchers are increasingly focused on helping people rebuild the lives they want after injury. By combining a scientifically validated assessment with personalized feedback and direct access to community resources, the app extends years of rehabilitation research beyond the clinic and into survivors’ daily lives.
“It’s a unique collaboration between research and clinical care, technology, and the community,” Schneider says. “We’re trying to use this technology to bridge the gap between the needs of this population and the community.”
The LIBRE Go! mobile app is available for download on both Google Play for Android devices and the App Store for iOS.
Citation: Huan Deng, Gregory L Frasco, John T Morris, Amy Acton, Diana Tenney-Laperriere, Mary D Slavin, Lewis E Kazis, Colleen M Ryan, Jeffrey C Schneider, LIBRE GO!: A Mobile Application for Longitudinal Social Participation Assessment and Resources Connection after Burn Injury, Journal of Burn Care & Research, 2026;, irag109, https://doi.org/10.1093/jbcr/irag109