After 13 months in hospitals, enduring countless surgeries and mind-numbing hours of physical therapy, Diana Tenney was happy to regain the ability to do something she took for granted before her massive burn injury—bending her elbows enough to blow her nose.
She could make a meal again. She didn’t need help to get dressed. She could reach up and hug her fiancé, Jerry LaPerriere, who helped put out the flames when her clothes caught fire while burning branches in an outdoor fire pit.
Tenney suffered second- and third-degree burns over 90 percent of her body in that March 2010 accident at her home in New Bedford, Massachusetts. Much of her skin that escaped being burned was later harvested for multiple skin grafts to other areas of her body.
“I’m about 99 percent scars after all that,” Tenney said with a quick laugh. “I still get stares, but I’m more used to it now. If someone is staring blatantly, I just go over, smile at them and say hi.”
The stares continue, as does the intermittent fatigue, and, for those like Tenney who suffer extensive burns, the mental stress of repeated follow-up surgeries to relieve constricted skin. These lingering and often invisible effects of burns are part of a complex array of social and psychological reactions that a School of Public Health project is hoping to measure.
LIBRE—the Life Impact Burn Recovery Evaluation—is creating an innovative computer-adaptive tool for measuring progress along the path to what Tenney and other survivors call “the new normal.” For the past year, LIBRE researchers have held focus groups with burn survivors and conducted in-depth interviews to generate a comprehensive pool of questions about the aspects of recovery that aren’t purely physical.
With guidance from a team of rehabilitation experts and a team-led analysis of established research, LIBRE researchers isolated four major areas of concern for new burn survivors: social and community life, relationships with family and friends, romantic relationships, and work life.
“We’re interested in identifying what some of the barriers might be, and then possible intervention strategies,” said Lewis Kazis, professor of health policy and management. “We have an adage in the measurement world that if you can’t measure it you can’t change it. 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.”
LIBRE is a five-year project funded by a $2.4 million grant from the National Institute of Disability and Rehabilitation Research (NIDRR). Kazis directs the SPH Center for the Assessment of Pharmaceutical Practices and is co-principal investigator on the LIBRE Questionnaire project with Alan Jette, professor of health policy and management and director of the Health & Disability Research Institute.
LIBRE researchers are currently in the calibration phase of their project, refining the battery of questions that will be used to generate the eventual computer-adaptive tool. As with all computer-adaptive tests, Kazis said, the answers to the first few questions will guide what other questions may be asked, reducing the time and number of questions needed to get an accurate assessment.
“So much of this is dependent on the process of forming the question pool, and a big part of that is determined by qualitative studies, conducting focus groups, and meeting those burn survivors,” Kazis said. “And it’s important to be able to ask them questions about such things as employment, such as, What’s it like to get back to work? What kind of adjustments needed to be made? How is your supervisor? Has it been a positive or a negative experience?”
By deconstructing the process of an action—returning to work, going out in public for the first time, or rekindling a friendship are typical examples—researchers hope to distill survivors’ personal experiences into a quantifiable metric. “We want to be able to gauge whether things are working well, or not so well, and what interventions should be considered,” Kazis said.
Once developed, the LIBRE Questionnaire will have an intentionally small footprint, able to be deployed on tablet, mobile phone, or embedded on a website. LIBRE could yield the type of detailed assessment aid that clinicians have sought for years, according to Amy Acton, executive director of the Phoenix Society for Burn Survivors.
The Michigan-based group (named after the mythical bird, not the city) is a collaborator on the LIBRE project, along with the Boston-Harvard Burn Injury Model System (co-directed by Jeffrey Schneider, MD, and Colleen Ryan, MD), a research partnership of Spaulding Rehabilitation Hospital, Massachusetts General Hospital and Shriners Hospital for Children–Boston.
Each year, 40,000 people are hospitalized with burn injuries, and many of them face similar hurdles during the return to their work, schools, or community. There is a wide variation in the extent of psychosocial support at the nation’s 120 burn centers, Acton said, and even less support available at smaller or less-specialized health care providers. If successful, LIBRE could offer a standardized assessment tool clinicians could employ to better coordinate care for the invisible wounds of a burn injury.
“It will help validate some of the issues that we’re dealing with on a daily basis, for both survivors and their family members, and it can offer a trajectory of recovery that people can identify,” Acton said. “There’s social anxiety and an impact on relationships, whether intimate relationships or family relationships. We hope that [LIBRE] can help them understand what that they’re facing. Many of us have never met another burn survivor until we’re thrown into this.”
Acton suffered an electrical burn when she was 18. She became a nurse and worked at the same burn center where she had been a patient.
LIBRE is currently recruiting 600 burn survivors, age 18 and older, to take the questionnaire and help refine the computer-adaptive aspect of the tool. Researchers are interested in a wide range of burn survivors, Kazis said, but they’re especially eager to recruit individuals whose burn injuries occurred three years ago or less. Those with more recent burns are likely to have experiences that reflect those of future users of the tool, Kazis said.
Acton said she hopes the LIBRE Questionnaire will help clinicians and advocates establish timelines for which issues emerge during a survivor’s journey back: “We might be able to identify when it would be best to supply people with a peer supporter. We know that at some times survivors aren’t ready for it when they’re in the hospital, but maybe they need one when they’re back home and hitting a wall in their recovery.”
For Diana Tenney, her physical recovery progressed quickly. After six months at the Sumner Redstone Burn Center at Massachusetts General Hospital, she was transferred to Spaulding Rehabilitation Hospital to help work on all aspects of her recovery.
“I was an extreme burn,” Tenney said. “When I got to Spaulding, it took five people to get me into an upright chair. I had so many tubes in me and no walking ability at all. I couldn’t even bend my elbows.”
At Spaulding she was initially scheduled for five hours of intensive physical therapy each day, which Tenney confessed she initially couldn’t stand. “I got bored. But then they showed me that, if done the right way, anything was physical therapy: making a pot of coffee, working around the house, you name it.”
She now bikes and kayaks, and also visits a local community center for a chair yoga class. However, when she first started the class, she endured some of the mental and emotional challenges of recovery in the often-strained social interactions burn survivors are likely to encounter.
“When I first started going, no one wanted to approach me. Everyone was very quiet, very reserved,” Tenney said. They could have been unsure of how to start a conversation, or worried about looking too closely, or fretting about how—or whether—to ask the question all of them wanted to know. Nevertheless, they finally came around, Tenney said, “once they saw that I was open to having a regular conversation, not just about my burn.“
As a peer supporter, Tenney helps teach other burn survivors how to navigate those uncomfortable moments. She and her fiancé—who incurred third-degree burns on his arms trying to help Tenney during the accident—are involved in Burn Survivors of New England, providing peer support and hospital visits with patients and family.
“Doctors have to be pragmatic and go by their medical knowledge., and they can’t give anything close to hope to a family or a person who is going through this. We can go in and share our stories and explain that there will be a new normal,” Tenney said. “We let them know that they can come back. It will be a little different, but you can still have a good life after your burn.
“It’s a lifetime bond with other burn survivors. Unless you go through what we’ve been through, there’s really no way to understand it.”
If you are interested in learning more about LIBRE or becoming involved in one of its active projects, please contact the research team.
Submitted by Mike Saunders