LIBRE: Life Impact Burn Recovery Evaluation
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LIBRE Profile: The Next Chapter
As we continue into our next chapter, we will be transitioning from our BU home to homes at the Boston-Harvard Burn Injury Model System (BHBIMS) and the Phoenix Society for Burn Survivors, our collaborators throughout this project. We look forward to continuing to pursue new opportunities to advance the use of the LIBRE Profile among burn survivors, clinicians, and researchers. For the latest information about the LIBRE Profile and ways to stay involved, as well as resources about burn injury recovery, visit these sites:
Phoenix Society for Burn Survivors:
We appreciate the support that the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) has provided us to carry out the LIBRE Project. As we come to the end of our funding through NIDILRR, we are pleased that the LIBRE Profile will continue!
The original funding support carried us through many phases:
- Establishing a conceptual framework
- Developing items (questions)
- Field testing with 601 burn survivors
- Calibration and LIBRE Profile development, including Computerized Adaptive Test and short forms
- Assessing reliability and validity
- Developing score reports and stages
This project has increased awareness of the impact of burn injury on social participation through nine published papers, dozens of presentations nationally and internationally, videos, and countless conversations. Most importantly, this project has made a difference in the lives of burn survivors and those who care about them by creating a new tool to measure social participation and track the recovery process.
We have so many people and organizations to thank! THANK YOU to the Phoenix Society for Burn Survivors, the Boston-Harvard Burn Injury Model System, Burn Survivors of New England, BU’s AdLab and Software Application and Innovation Lab (SAIL), our clinical advisory board members, burn injury centers, clinicians, allied health professionals, researchers around the country, and, above all, to burn survivors who shared experiences, gave time and energy, and made this project possible.
The LIBRE Profile is an innovative tool for measuring a return to life after burn injury.
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, LIBRE focuses on the impact burn injuries have on social life.
LIBRE Profile is a computer-based questionnaire. The tool will be used by burn survivors and clinicians to track an individual’s burn recovery, improve rehabilitation efforts and identify areas where additional support is needed.
What is unique about this questionnaire is that it is:
specific to people with burn injuries
tailored to the individual
focused on the social impact of burn injury
LIBRE Project is a community.
Throughout the course of this project, we aim to build a community of people interested in improving the recovery process for burn survivors. We share updates through this site as well as on Facebook and Twitter.
LIBRE is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research, a component of the U.S. Department of Health and Human Services’s Administration for Community Living.
LIBRE is an innovative questionnaire for measuring a return to life after burn injury.
Attempting to return to everyday life after a burn injury can be emotionally challenging. Due to ongoing symptoms, potential physical disfigurement and the stress of coping with trauma, many burn survivors face difficulties going back to their job, relating with their family, their friends and their significant other.
The LIBRE Project is currently developing a computer-based questionnaire to assess the impact burn injury has on social functioning. The questionnaire will look beyond physical recovery to focus on social areas such as:
- Social and Community Life
- Relationships with Family and Friends
- Romantic Relationships
- Work Life
Once completed, the LIBRE Questionnaire will be a comprehensive burn recovery evaluation using an innovative test format, the computerized adaptive test (CAT). Using CAT technology, a burn survivor will receive an accurate assessment of how they are recovering across multiple domains after answering only a handful of questions.
The LIBRE Questionnaire will be used by burn survivors and clinicians to track an individual’s burn recovery, improve rehabilitation efforts, and identify areas where additional support is needed. The goal of the project is to empower burn survivors to better understand their own recovery process and provide real-time data to clinicians and researchers to improve rehabilitation.
The LIBRE Project is a collaboration between BUSPH, the Boston-Harvard Burn Injury Model System – a research partnership of Massachusetts General Hospital, Spaulding Rehabilitation Hospital and Shriners Hospital for Children – and The Phoenix Society for Burn Survivors. LIBRE is funded by the National Institute on Disability and Rehabilitation Research.