Season 1, Episode 1: From Survival to Survivorship, Part I

Transcript of Episode 1

Diana: (00:00:00) I was burned 90% third degree 4% Second Degree in 2010. I was 54 years old. I'm about five foot four I weigh about 110 pounds and even with winter clothes and a turtleneck sweater, you can still see my scars because they compromise about 99% of me.

Shonali: (00:00:35) Welcome to Finding Strength, the Spaulding Rehabilitation Podcast where we try to connect the dots between rehabilitation research and the people who are most impacted. Today's episode is the first of a two part series inspired by the article ‘From Survival to Survivorship: Framing Traumatic Injury as a Chronic Condition’ by doctors Juan Herrera Escobar and Jeffrey Schneider, published in the New England Journal of Medicine in August 2022. Jeffrey Schneider is with us today to talk about coordinated care across the lifespan. Dr. Schneider is the medical director of trauma and burn rehabilitation at Spaulding rehabilitation, and an associate professor of physical medicine and rehab at Harvard Medical School. He serves as project director of The Boston Harvard Burn Injury Model System, a multi-institutional center grant focused on long term outcomes in the burn population. His interests also include utilizing large data to explore rehabilitation outcomes, and he's the co-director of the rehab outcomes Center at Spaulding, and also happens to be my boss. We're also joined by the voice you heard at the top of the episode Diana Tenney. Diana is a burn survivor who sustained burn to over 90% of her body 13 years ago. She has completed well over 1000 peer support visits and speaks locally and nationally about her experience as a burn survivor. Diana currently serves as co-director of Knowledge Translation for Boston Harvard Burn Injury Model System. She is past President and Board member of BSONE the burn survivors of New England, co-director of the Diana Tenney Burn Research Fund and a member of the Spalding Council on Disability Awareness. I'm your host Shonali Gaudino. I'm an occupational therapist and I have been working for Spaulding for over a decade. I'm now the administrative director at the rehabilitation outcomes Center at Spaulding, and I'm on a mission to build bridges amongst our community of clinicians, researchers and people with lived rehab experience. Since Dr. Schneider is a founding director of the center that employs me, I wanted to hear from him first. What was Jeff’s vision for the future of the Outcomes Center and for this podcast?

Jeff: (00:02:53) Yeah, well, first, it's a privilege to be here with Diana today. I've had the privilege of getting to know her over the past 12 years and work alongside her. And to be part of this podcast, which is really trying to bring together these ideas of the science and the research that are going on in this field of rehabilitation. And how that affects and impacts. Everyday people who are living with the issues that we're working on and their stories and bringing research as often is very hard to do into the personal realm so that the average person can understand what what's going on and why it's important.

Shonali: (00:03:29) The model of the podcast is bringing researchers, clinicians, patients, advocates, community organizations into the same room, giving them a topic and seeing where we can find commonalities

Diana (00:03:43) that the researchers understand the research-ees and the research-ees understand the researchers. It's about communicating. And, you know, what, what are your thoughts on this? And why are you doing this? And why do you need me to tell you my personal information? I think we have a really hard time when people are very skeptical about joining research projects And I think it's important for the burn survivors to know that the research our burn researchers are doing things to help not only burn survivors to come, but in our lifetime. It's kind of like it's kind of like laser when I was burned, laser was not being used for scar tissue treatment. Little did I know that I still today and using that treatment. So I think it's important to know that the results on the kind of research that we're doing today aren't going to be 10 years from now like a pharmaceutical research project. But then it's actually going to be information that can be used to make their lives better.

Shonali (00:05:02) So, why do we do rehabilitation research? In some ways, it feels different than just your typical drug clinical trial. As you’ll hear Diana say, it’s not just about helping people live, but about helping them live well. Throughout these podcasts we’ll share bits of stories that help us understand that nuance. Here’s Diana talking about how little we know about managing the complex medical needs of burn survivors throughout their lifetime.

Diana (00:05:33) So I started looking for research papers on burns and long term conditions, and found very few, most of them I had to request access to because they were proprietary research. But even though I'm thriving, now, my burn injury still affects me 12 years later, I had my first blood work labs after six years, in October of 2022. Because I don't have any vein access. And for the same reason, I've been refused a colonoscopy. And I've been reviewed, refused a gallbladder removal. And so I suffer periodically from three large gall stones that are just kind of sitting there in my gallbladder.

Jeff: (00:06:20) My focus in my career, my last 20 years in working in rehabilitation medicine has really been on thinking about people with traumatic injuries, and learning and understanding their process of recovery, and trying to understand new and better ways to support and aid them in their own recovery to be their best selves and fully recover as much as possible. And I've learned a lot through that process, I think the Outcomes Center is really focused on a similar goal, which is really understanding people's longer term outcomes this article sums up a lot of the major themes that we've been focusing on, which is really trying to rethink about a traumatic injury as a chronic condition. And not everyone with a traumatic injury evolves into your chronic condition, but a lot of people do. For a long time, people thought of a traumatic injury as an isolated event that was more finite in its recovery part of that was our main focus was on survival. Thanks to really wonderful advances in medicine in the last generation or so most everyone, even with the most severe injuries, are surviving. And so we now have new groups of people who in the past maybe didn't survive, those types of injuries are living the rest of their lives with the consequences of those injuries. In many ways, the health care system wasn't developed to manage this more longitudinal aspect of people's problems. It was set up to manage the acute issues.

Diana: (00:08:00) I think you have to look at three three things. Are you a victim, are you a survivor? Are you a thriver? And the ultimate goal is to not only to get people to live but to live well. Live quality life. I know are burned survivors that were burned 40 years ago that are coming back for reconstructive surgeries, or that got so busy with their lives and didn't take Take the emotional time to grieve that now they're coming back with emotional issues related to their burns 40 years ago. How can it not be a chronic condition?

Shonali: (00:08:42) Diana was offering us her lens as a burn survivor, but she has also made a huge impact supporting people at Spaulding who are newly burned. During her time doing that support work, she found kinship and real solidarity amongst people with other types of traumatic injuries, like David Estrada who offered peer support to people with spinal cord injuries.

Diana: (00:09:13) During my many regular visits to the hospital, I was here in Boston about three days a week, doing peer support worker committee work. I started talking to David Estrada and we came to find out that our traumas, his is a spinal cord injury, our traumas had very similar issues, both physically definitely emotionally. We needed the same resources. So we started talking on a regular basis. And then we brought in traumatic brain injury stroke, we just noticed that many of our post acute trauma, population issues were related.

Jeff: (00:09:59) You know, I think that's been one of the main challenges of the advocacy of traumatic injuries is that for a long time, all these different populations who consider them to having a traumatic condition or traumatic injury are have been disparate, and they're not necessarily connected. You know, there's like different survivor organizations, there's a burn survivor organizations, there's ones for head injury to one's for spinal cord injury, there’s ones for gun violence, there's ones for amputees. But these different conditions have have not historically worked together on either on various levels, but definitely not at a national level. And, you know, to get really things done in a policy realm, I think that there's a real need for these groups to work together. One of the challenges of traumatic conditions is that there hasn't been really a great consensus about how to define who is included in that group. But that's come at a cost of not organizing together. And so that's something we as a, as a field and as communities, we need to work together to bridge that gap. And I think that would help us achieve these these bigger goals about caring for the chronic conditions.

Diana: (00:11:10) Our voice would be so much bigger, as a trauma group, rather than as a burn survivor group. You know, spinal cord injuries, they have been very successful in getting accessibility laws change. They're they're in there at the statehouse, and at the White House or at the Senate, and House of Congress, and they've done a good job on that. So maybe we should be looking to see what each of our strengths are.

Shonali: (00:11:39) and what are some examples of the things that you're seeing that are commonalities?

Diana: (00:11:44) a lot of physical conditions actually, believe it or not? Pressure wounds, many spinal cord and stroke patients are prone to burns from skalds because they have either, little mobility or control of their hands. So, hot cups are dropped of liquid hot liquid spinal cord injuries that have no feeling in their legs can be I've known people to be sitting around the fire pit and a coal pops out and lands on their foot. And they get burned and they don't even know it. So it's like, two weeks later, it's infected by this time, because even small burns need treatment. And a lot of the emotional issues a lot of the PTSD, a lot of the Depression, why am I here, so a lot of mental health issues. And like I said, we all have trouble with the resources once we are discharged from the hospital, the transportation to our doctor's appointments, the housing just a lot of those post discharge resources.

Shonali: (00:13:00) After talking about how these various groups have similar challenges, and could team up for a louder voice to advocate for their needs, I wondered – what would they advocate FOR? What are their common goals and how would they measure them to know when they got there?

Diana: (0013:19) So I started looking for alternative self-help methods to my conditions and started with chair yoga. I graduated to mat yoga, then I was convinced by a 90-year-old woman that I needed to do cardio gold, which led to Zumba gold, which today I do about three, high impact high cardio Zumba classes a week.

Shonali: (00:13:47) how would you say that you're measuring you having a good life? Like, how do you define it?

Diana: (00:13:52) I have about four different social circles. My burn survivor, my health care people, other friends that I stay in touch with on a regular basis, we're finally getting married this year. And that wedding was planned from before the burn. And when I was asked to come up with the invitation list, I think it included about 250 people. So that that tells you that none of my social circle abandoned me because I'm scarred or, you know, because I was hospitalized for so long. I would say that I am more physically fit than I was before my burn. Because I found something that I love to do. I don't call it exercise, I call it dancing. It's just a quality of life, my relationship. I have my church, my family. It's that's that's what I would wish for people. But I also think we all need to be taken seriously by our health care providers when we think something is wrong, that network of providers that can diagnose us properly.

Jeff: (00:15:10) You know, we try to learn from each other, you know, a number of years ago Diana came to us and tell us told us that she was having a hard time and she knows lots of other prescribers with fatigue. And we said huh, we're like, you know, there's nothing about fatigue and people who have had a burn injury. So we'd like look through we actually we had data on fatigue and we went back and no one looked at it. And guess what? Half of burn survivors are actually experiencing fatigue years after their injury. I think this this podcast has been emblematic of this but to partner together is really just such a wonderful…

Diana: (00:15:51) I think the most important thing is people actually people like Jeff actually listened and followed up on it. Actually, one one of my health care professionals said, Well, maybe it's an emotional fatigue, you know, you're carrying around 99% scars, maybe it's an emotional fatigue and goin, “I don’t think so!” I know some people and I've talked to some burn survivors that got off disability went back to work, and could not handle an eight hour work day because of the fatigue they were suffering.

Shonali: (00:16:28) So, Jeff, are we measuring those types of things?

Jeff: (00:16:30) I think we're slowly moving in that direction. The, the federal agency that funds the different model systems has really made that a priority. It's called the National Institute on Disability Independent Living and Rehabilitation Research. PCORI is another federal agency that's really dedicated to that model too, Patient Centered Outcome Research Institute. I think for a long time, we were focused on proximal outcomes, things that are shorter term. For a burn survivor, I think about the range of motion of a joint. When I talk to the patients I take care of, they don't really, usually tell me about the range of motion of their joint, they talk about, the quality of their life, if they get back to doing the things that they care about, that are meaningful to them, whether it be Zumba, or interacting with their friends and family, working … we, our group, actually helped develop an instrument called the Life Impact Burn Recovery Evaluation, acronym is LIBRE, measuring in the burn survivor population, these different aspects of social participation, like employment and your relationships with your family and friends. romantic and sexual relationships. when we designed this instrument, We were very heavily collaborated with burn survivors in the burned several organizations, both locally and nationally, to help us understand what are the issues we should be measuring? To test the questions we actually measure, you know, to understand interpret the information we got when we did this, developed this instrument. So we're hopeful that things like that will lead to, more meaningful ways of understanding people's outcomes and thinking about the chronic condition, and what are the issues that matter to people long term, over their lifespan. In that work that we did, we looked at people up to 70 years after their injury, there is not a lot of information like this out there, to look at how people are doing for years, decades and decades, and people are still talking about how their injury affected how they live their lives.

Shonali: (00:18:37) In their article, Drs. Hererra-Escobar and Schneider write the following: “The long-term physical, mental and social sequelae of moderate to severe traumatic injuries, and of mild injuries in the context of a life-threatening event, are substantial and have long been neglected. People who survived such injuries have increased rates of post-traumatic stress disorder, chronic pain and functional limitations, poor health related quality of life and social functioning years after injury, and a delayed return to work and increased risk of developing other medical conditions. This burden is especially high among members of marginalized populations, people with low socio-economic status, and members of underserved racial or ethnic groups are at increased risk for injury and have worse post injury outcomes than other people. People of Color account for 40% of the US population, but nearly two thirds of people with violence related injuries, largely because of the effects of structural racism.”

Jeff: (00:19:51) I think that those facts just highlight needs of this work. And that the people who often experienced these traumatic injuries are often people who have less resources, or sort of have additional barriers to succeeding in their recovery socially, financially, there's some really interesting work which is that the socio-economic status of the neighborhood you live in, is a better predictor of the recovery you have from an injury than things like the severity of your injury. And that really just highlights the same idea, which is, you know, the structural challenges, the resources, you have financial and social challenges, all compound and contribute significantly to sort of the path you will take. And so all the more reason we have to work to find a way and engineer our system to take care of the people who have these injuries.

Diana: (00:20:50) I would say the socio-economic issue is huge with burn survivors. They do not have transportation to get back to their follow up procedures. Our public health care transportation seems to need a little work on their policies because you're not even allowed to apply for that until you are discharged from the hospital. And then there’s the housing; there’s a housing crisis all over Massachusetts, especially, imagine not having the money to get an apartment, or more importantly not being able to find anything that is accessible if you need accessibility. And I think that is part of what overburdens some of our healthcare institutions, is when you have nowhere to discharge that person to. And they don’t have any family. And then you know, you get back to families with that can’t even better behind on their utility bills by the time they get back home. We definitely need some funded resources for those issues.

Shonali: (00:21:58) And we're seeing more of this in research where all these different grant opportunities are really focused on making sure that we're bringing in people of different races, ethnicities, disability backgrounds, as part of the, the process as the clinicians as the researchers, because we need those perspectives in the process. And in the people who are in the policymakers, right, we need to elect more people to our government systems that have that lived experience and that come from backgrounds that they they understand what the challenges are more than anybody else.

Diana: (00:22:36) I would totally agree with that. When I first started working, Dr. Tschida was the head of NIDILRR. And he himself was a spinal cord injury. And I went to testify at a couple of hearings, he had setting priorities. And he actually understood what we were talking about. So I think you're absolutely right. And until we can get people in those places of position in, in government, where the policies are made, I think we at least need to have a seat at the table, to be there to advocate for our populations. And we need someone who is not afraid to speak out and, and talk about their injuries and their issues. Because there's no way that anybody can read on a piece of paper about our injuries and understand it. I can write all of the letters that I want. But unless they can hear me firsthand, and hear my story and hear other survivors stories, the impact just isn't there.

Shonali: (00:23:42) So we'll keep our eye out for Diana Tenney, State Senator 2024

Diana: (00:23:) I think not I detest politics of any kind.

Shonali (00:23:52) Makes you a perfect candidate, I think.

Jeff: (00:23:55) You know, I'm trained as a physician, I do research. But I'm not a legislator or a lawyer But the more I do this, I think that these issues of policy are super important, and that they have the ability to impact things on a broad scale. And so, you know, one of the things we focused on in this article was this idea of the Centers for Medicare and Medicaid Services, CMS, they have a list of chronic conditions. And traumatic injuries, are not on that list. And that sounds like a really small thing. But I think it can lead to and facilitate new ways of reimbursing these chronic needs of the traumatic injury populations, it can lead to new clinical models of care. You know, as a burn survivor, maybe seeing a reconstructive surgeon is helpful seeing a rehab medicine doctor, a physical therapist and occupational therapist might be helpful, right? There's also all these financial things she's talked about, right? So social workers, and then there's the mental health aspect, which is so common and like we know that post-traumatic stress depression are extremely common. So like mental health providers, psychologists, psychiatrists, what if you went to a clinic, and they had all of those providers lined up to see you? I saw a patient recently a few weeks ago, and he's years out from his burn injury. And he's still talking to me how he can't get access to a mental health provider, he's had to go through his primary care provider, and the insurance and, his providers are all different places, he gets his care at one hospital system for one thing, and other hospitals for another, and then he's lost financially, he's, you know, unemployed, he doesn't know how to navigate the system to get the benefits that he potentially would qualify for. He's struggling to figure those things out on top of all these mental health things he's dealing with. That type of clinic would be an ideal setting for a person like this. And I think we can learn from others who are doing this well, and in different populations in medicine. There's definitely cancer populations have done a good job with these sort of multidisciplinary survivorship clinics. And I think there has been some successful models to with HIV and with diabetes, people who really benefit from seeing multiple different disciplines at once, in one coordinated setting where people might sit down after they all saw you and have a meeting amongst all those providers to think about the best care plan for that individual.

Diana: (00:26:27) I think it comes down to people knowing themselves learning their burns or whatever traumas they might and and, you know, put forth that little bit of effort to educate yourself. So I think maybe we need to have advocacy clinics, some self-empowerment clinics that just tell people, yes, you have the right to ask questions. Yes, you have the right to disagree. If you do not think you are getting treated the way that you need to be treated. So I think we need to speak up for ourselves a little bit more, and maybe teach people to do that.

Shonali: (00:27:06) Now, Diana, you're a past president and board member of the burn survivors of New England or BSONE. Can you tell us a little bit about the history of that organization, what types of things you guys do for people?

Diana: (00:27:18) The history of the organization, it was formed by George Pessotti, who was burned somewhat over 40 years ago, and George met a gentleman named Alan Breslau, which became the founder of the Phoenix society, the international organization. And George just started doing peer support and peer support group meetings. And that that went on for quite a while, and I got burned. And I didn't have anything to do. And I had a skill set of running a business and administrative issues and fundraising and, and all of that good stuff. So we, we kind of took it up a level, we started networking with other organizations. Joining the American Burn Association, joining an international organization called Face equality International, and then COVID hit, so, we kind of reorganized and we stepped back, we did a lot of social connection, Zoom meetings we have people from all over the United States and other countries that come now. But we went more to helping people individually as we could with transportation with paying the utility bill because nobody in the household was working. We started working with the Boston firefighters burn Foundation, extensively. And then we had the support of our board, which we have a lot of professionals as well as burn survivors. So we've kind of made it through COVID. So we yeah that's that's where we are today, we're still doing our peer support being our main mission. It's just an emotional support, to give hope. That's all we can give. As George says on our peer support video, you know, you can't prescribe hope in a bottle, you have to have someone to give it

Shonali: (00:29:20) I think it's going to be the human stories that really bring us all together, right? And that's the thing that we want to elevate is we need more of the human story in everything that we do in healthcare. So my question for you is when you think back to your life pre injury, how has your life changed? And maybe even how have you changed since preinjury?

Diana: (00:29:41) I always tell people that I came out of my burn injury because of all of the people who cared. And after almost being declared dead about five times. I think you come out I came out with a much greater sense of gratitude for very small things. Like walking across the floor, like making my own pot of coffee. I think the gratitude is there. I actually came out with a purpose when I was kind of at that middle age where I'm going well, why am I really here? And so when I got involved in the volunteer aspect, and working with people who saved my life, it did give me a great sense of purpose and something to accomplish in some goals.

Shonali: (00:30:38) Is there… what do you think is the takeaway? Do you have like, a key takeaway? Don't they do that the end of Wait, wait, don't tell me. Isn't there like a final joke or something? Any final thoughts based on everything we've been saying?

Diana: (00:30:53) I mean, I think it's I think it's what Jeff said, I think it's about us all coming together and being on the same page and working toward the same goals with the survivor in mind. Not with the dollar sign in mind, not with oh, I'm going to be, sorry, Jeff, but I'm going to be published in the New England Journal of Medicine. I was talking to a little bit earlier about all the proprietary research, and I call it bookshelf research, where you take something and you research it, and most of those are clinical lab, research papers, but you know, you research it, you publish it, and then you put it on the bookshelf, and nobody else sees it. And it's not used. And I think that that is just a waste of money to me. You know, let's research things that we can use, and that will benefit all of us.

Jeff: (00:31:52) Yeah, I think that this topic of traumatic injuries as a chronic condition, in some ways, is a great starting point. Because when we think about Spaulding and rehabilitation, and the theme, find your strength, I think that's really embedded in the same concept, which is, you know, how to help people live their best lives, what's the science behind how we can do that even better in the future? And how to really bring that to individuals who are living through this right now.

Shonali: (00:32:23) We happen to be launching this series on March 6^th, two days after the passing of Judy Heumann, a true force behind civil rights. She went beyond advocacy to helping us reimagine our relationship with disability. If you don’t know her, please read up on some of the links on our site.

Shonali: (00:32:44) If you’ve enjoyed this podcast, please know that liking, subscribing, and sharing is essential to sustaining our work. The Finding Strength Production is a collaboration between the Rehabilitation Outcomes Center at Spaulding and our Model Systems: The Spaulding-Harvard Traumatic Brain Injury Model System, the Boston-Harvard Burn Injury Model System, and the Spinal Cord Injury Model System, all funded by the National Institute on Disability, Independent Living, and Rehabilitation Research. The material presented here is for general information purposes only.

Shonali: (00:33:18) So, is Jeff invited to the wedding?

Diana: (00:33:20) Absolutely. Absolutely. In fact, I I have my save the date card for you.

Jeff: (00:33:31) Awww, I can’t wait.