Category: Libre Blog
Tracking the Road Toward Recovery
How did we develop the LIBRE Profile? Now we have an infographic to illustrate the process! It is a two-page roadmap that shows the steps through which burn survivors, medical/support team members, and researchers collaborated to build the LIBRE Profile. For a high resolution version to read or print, you can download a PDF of the infographic HERE.
2017 BSONE Walk
We had a wonderful time walking with everyone at the Burn Survivors of New England (BSONE) Walk for Advocacy and Awareness. It was a beautiful Saturday morning by the water in Boston.
It’s always great to see the smiles on everyone’s faces! We also enjoy seeing #justsmile on the t-shirts referring to this PSA.
Busy September at LIBRE!
We started September off with a few big changes and events. Melinda Rossi, LIBRE's Research Assistant since the beginning of the project, has moved on to a new and exciting job in health policy. We appreciate how much Melinda has done and we will miss her enormously! Thankfully, before she left, Melinda was able to train LIBRE's new Research Coordinator, Emily Dore, who started three weeks ago. Emily is excited to be a part of a great team doing important work. Check out her brief bio here.
On September 12th, we participated in BSONE's Walk for Burn Survivors for our second year in a row. It's always a great day full of familiar faces, sunshine on the Charles, and good food! If you haven't been before, we would highly recommend it.
Also this month, we reached 450 completed surveys!!!! We celebrated by making hats and trying to balance them on our heads. This means we're 150 surveys away from our goal, with a few more months left of recruiting. We're now looking for burn survivors who sustained their injury less than 10 years ago so that our responses are balanced between recent and further out burn injuries. Help us spread the word so we can reach our goal! Contact us through email, libre@bu.edu, phone 1-844-255-9987, or through our website.
LIBRE Facebook Page Launched
We’re pleased to announce that LIBRE has officially joined Facebook! We plan to use this page to:
- keep our LIBRE community up to date with what’s going on at LIBRE;
- release findings from the LIBRE study;
- post interesting information on the social recovery of burn survivors;
- and stay in touch with past participants and others interested in LIBRE.
As LIBRE will be an on-going project for a few more years to come, we want you to be able to follow our journey. We also want you to have a place to provide us feedback and insight from your own journeys.
So, like us on Facebook, leave us comments, send us messages and keep track of what we have going on.
We hope to see you on Facebook! You can access our site here.
200 Surveys Completed! Only 400 to go…
Less than two months since the second phase of the LIBRE project began and we have officially completed 200 surveys with burn survivors! With a goal of 600 completed surveys, we're certainly not slowing down in LIBRE headquarters but we wanted to take a moment to celebrate this milestone.
From our kickoff at the World Burn Congress in October, where 70 surveys were completed over only 2 days, we've been very busy keeping up with the unbelievable initial response we've received!
We can't thank enough our supporters who helped get this phase off the ground. This includes The Phoenix Society and the Burn Survivors of New England whose members have enthusiastically participated and helped guide our project, as well as the many other burn survivor groups and burn centers across North America that have supported us.
Now we need your help to keep this momentum going! If you don't know, these surveys are helping us develop a computer-based tool to measure the social recovery of burn survivors. Participants essentially have a chance to test the questions that may be included in the LIBRE tool we're developing. Surveys can be completed online or over the phone. Contact us if you're interested in participating, or spread the word to others.
We still have a long way to go to hit 600! It is only with your support that LIBRE can reach our mission to empower burn survivors to better understand their recovery process and improve rehabilitation and care for burn survivors.
One happy LIBRE team. Left to right: Vivian Shie, Rene Soria Saucedo, Flor Amaya, Molly Marino, Melinda Rossi
LIBRE in Berlin: ISOQOL Conference October 2014
While this post is a little belated, we would be remiss to not mention LIBRE's recent trip to Berlin! Back in October 2014, Molly Marino, LIBRE staff member and current PhD candidate, flew across the Atlantic to represent LIBRE at the International Society for Quality of Life Research (ISOQOL) Annual Conference. The theme of the conference was Quality of Life: Advancing Measurement Science and Transforming Healthcare.
During the conference, Molly presented a poster describing the conceptual model we're using to guide the LIBRE project and the development of items that will be included in the LIBRE questionnaire. This poster shows, in brief, our analysis from an extensive literature review and the amazing feedback we received from our focus groups and interviews with burn survivors and clinicians.
While Molly had a great time at the conference - attending talks and showing off LIBRE's work - she also managed to fit in some time to see some of the beautiful city that is Berlin. We count ourselves fortunate that we can travel to such great places to share LIBRE with others!
World Burn Congress Success!
Opening Ceremony - Walk of Remembrance
We just got back in the office from a few days in sunny Anaheim, CA attending the Phoenix World Burn Congress (WBC). We're still exhausted from an exhilarating few days meeting burn survivors, hearing amazing survivor stories, conducting surveys, and grabbing some California sun.
This conference marked the official beginning of the second phase of the LIBRE project! During this phase, burn survivors are filling out an early version of the LIBRE survey. The positive response we received from burn survivors at Phoenix WBC concerning the LIBRE project absolutely floored us.
$417 Raised for the Phoneix Society through Completed Surveys
We completed more surveys in 2 days at Phoenix WBC than we ever felt possible - 70 surveys were completed by burn survivors! Additionally, we made countless contacts with people willing to fill in the surveys from home.
For each survey completed and contact obtained during Phoenix WBC, money was donated to the Phoenix Society for Burn Survivors. We're proud to announce that in total, $417 was donated to the Phoenix Society! Who knew so much could be accomplished in such a short period of time?
LIBRE Investigators: Lewis Kazis, ScD; Amy Acton, RN, BSN; Colleen Ryan, MD, FACS
In addition to completing surveys, we had some amazing moments connecting with burn survivors at the conference. We all left the congress with the deeply felt belief that Phoenix WBC is really a very special event filled with amazing, loving, passionate people. We can't wait to go back next year!
Now we're back to Fall and back to Boston, where we'll be following up with the amazing contacts we made in Anaheim. We'll also be continuing to conduct surveys for the next year, so if you're interested in participating in a survey, feel free to contact us.
Oh and don't worry, we did manage to bring a little Californian sun back with us.
Drs. Kazis and Ryan Present on the Burn Outcomes Questionnaires (BOQ)
Dr. Lewis Kazis
Drs. Lewis Kazis, Principal Investigator, and Colleen Ryan, co-investigator of the LIBRE project, presented at the Kaiser Permanente Population Health Strategy Webinar on August 28, 2014. Their presentation highlighted some of the excellent work they have done over the past decade to improve the care received by burn survivors.
Drs. Kazis and Ryan spoke about the Burn Outcomes Questionnaires (BOQ) they developed to track the physical, emotional, and social recovery of children and young adults with burn injuries. The results from this survey provide feedback to the burn survivor, their family and their clinicians on the progress of the burn survivor’s recovery.
Dr. Colleen Ryan
A burn survivor’s results on the survey can be compared to burn survivors similar to themselves to see how they are doing on their path to recovery. This helps clinicians focus on areas where a burn survivor may be having more trouble in order to improve the quality of care and quality of life of the burn survivor.
The BOQ surveys, discussed in this presentation, have laid the ground work for what the LIBRE project is now developing for adult burn survivors. Use the links below to watch the presentation or to view the presentation slides.
The presentation will also be archived on our Publications & Presentations page.
Watch the Webinar
To watch the full webinar presentation, click here. Use the time bar at the bottom of the webinar to skip the introductions and go right to the presentation:
- 09:28: Dr. Kazis - using the BOQ with children and clinical trials
- 27:40: Dr. Ryan - using the BOQ with young adults and clinical applications
View the Presentation Slides
LIBRE at 9th Annual New England Walk for Burn Survivors
Saturday was a beautiful day in Boston for the 9th Annual New England Walk for Burn Survivors put on by the Burn Survivors of New England (BSoFNE). A team from the LIBRE project attended the gorgeous walk around the Charles River to support the great work of our friends at the BSoFNE.
The walk raised a little over $14,000 which will be used to help send burn survivors to this years World Burn Congress in Anaheim, CA and to support the many BSoFNE burn survivor programs. The BSoFNE supports the mission of the Phoenix Society by promoting peer support to burn survivors, fundraising and special events.
We're happy to report that we enjoyed good sun, good friends, and delicious food donated by Jacob Wirth, a favorite Boston restaurant. Our faithful canine companion, Nacho, also enjoyed taking a dip in the river!
Nacho, Flor, Rene, Melinda, Marina, Lewis
Interviews Complete!
We have just completed the last of our interviews for this phase of the LIBRE project, and we couldn't be happier! The feedback and insight we received on the questions we hope to include in the LIBRE measurement tool was wonderful.
We're also so grateful for the interest of the burn survivor community and the willingness to participate in our interviews. Your help will make the LIBRE tool accurately measure the social recovery of burn survivors. So thank you to everyone who took the time to participate in an interview!
Of course the fun never stops at LIBRE headquarters. We’re already starting to analyze the results from these interviews and are deep into planning for the next phase.
If you didn't have a chance to provide feedback on LIBRE in our focus groups or interviews, there will be more opportunities coming up very soon. So stay tuned for more LIBRE activities!
