Research is crucial to improving physical, emotional, and social recovery after a burn injury. When you participate in research, you are helping us fill holes in our knowledge and making sure future burn survivors have access to the best possible care.
Our Community’s Role
When Phoenix Society partners on a research project, we strive to ensure that research becomes innovation, and innovation becomes impact. By participating in research, you’re helping us amplify the voice of the burn community to make sure every survivor has the benefit of our lived experience.
Partners: University of Miami
Goal: To learn more about long-term outcomes for burn survivors
The University of Miami needs your help! They are studying long-term outcomes for burn survivors and are asking you to complete a brief online survey. Taking a few minutes out of your day can help advance and improve burn injury outcomes.
The Model Systems Knowledge Translation Center (MSKTC) is recruiting individuals with burn injury and their family members to provide feedback on three new factsheets on amputation, temperature sensitivity, and aging with a burn injury. To be eligible, participants must be at least 18 years old. Interviews will last approximately 60 minutes. Participants will receive a $25 gift card for their time. Call 202-403-5600 or email firstname.lastname@example.org to register.
Phoenix Society for Burn Survivors is collaborating with Burn Model System (BMS) and Model Systems Knowledge Translation Center (MSKTC) to develop and co-brand a factsheet targeted to burn survivors and their families. The goal of the factsheet is to educate individuals with burn injury (or their designated representatives) regarding amputation, temperature sensitivity, and aging with a burn injury.
Partners: Thermal and Vascular Physiology Laboratory, Institute for Exercise and Environmental Medicine at University of Texas Southwestern Medical Center
Goal: This study is looking at ways that burn survivors can keep cool during physical activity. This project will also develop a smart phone app that will inform burn survivors how safe it is to participate in physical activity based on weather and the activity’s intensity.
The lab is currently enrolling participants for their latest studies, which include 5 days of testing in Dallas. During this time, participants perform 60 minutes of treadmill walking in a heated room once per day for four days. On each day, a different cooling modality will be assessed.
The funding pays for travel expenses, hotel and related costs, and an hourly rate for the participant’s time while in the laboratory. There are some requirements and restrictions for participation.
For more information, get in touch with the research team:
Partners: Johns Hopkins University, Johns Hopkins Burn Center
Goal: To develop and test a new online program to help burn survivors manage their pain. Take Charge of Burn Pain is a computer-based, online program that gives information and tips on how to manage pain following a burn injury.
The LIBRE Profile assesses social participation after burn injury using six domains, including 1) relationships with family and friends; 2) social activities; 3) social interactions; 4) sexual relationships; 5) romantic relationships; and 6) work and employment. This study aims to develop recovery trajectories, or paths, for each of the six domains to help benchmark progress and identify appropriate treatment.
Preliminary results of the study show that recovery trajectories can be generated for each of the six domains. Four of the domains demonstrated strong evidence of improvement overtime after injury: 1) work and employment, 2) sexual relationships, 3) social interactions, and 4) social activities. Preliminary results also demonstrate evidence of improvement in these four domains for many decades after injury.
Study participants were 343 burn survivors 18 years of age or older, English-speaking, permanent residents of the United States and Canada, and with burn size over 5% total body surface area or burns to a critical area.
Study participants completed the LIBRE profile five times. Once at enrollment, and 6, 12, 18, and 24 months after enrollment. Statistical analyses were then used to develop score trajectories for each of the six domains.
Individuals with burn injuries and their families can use the preliminary results of this study to better understand expected trajectories of recovery regarding social participation outcomes. Clinicians can use the results of this study to inform patient progress in social participation and develop treatments.
Kelter, B. M., Shepler, L. J., Ni, P., Slavin, M. D., Acton, A., Kazis, L. E., Ryan, C. M., & Schneider, J. C. (2021). Developing trajectories of social recovery after burn injury: Preliminary results from the Libre Journey Study. Burns. [https://doi.org/10.1016/j.burns.2021.11.025]
The contents of this quick review were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant numbers 90DPKT0009 and 90DPBU0001). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this quick review do not necessarily represent the policy of NIDILRR, ACL, HHS, and you should not assume endorsement by the Federal Government.
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