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Caroline 5
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Caroline 5
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Transcript
Guest Introduction: Dr. Caroline Dorfman
00:00:00
colinyourbluff
Joining the conversation, we have Dr. Caroline Dorfman. She is an assistant professor in the Department of Psychiatry and Behavioral Sciences in the Duke University School of Medicine. She's a licensed clinical psychologist and is the director of research and behavioral medicine for the Duke Teen and Young Adult Oncology program.
00:00:18
colinyourbluff
Welcome, Caroline.
00:00:19
Caroline Dorfman
Thank you so much for having me.
Journey into Psycho-Oncology
00:00:22
colinyourbluff
wanted to just start off by asking what sparked your interest in cancer research?
00:00:27
Caroline Dorfman
Yeah, like many, I have a family history of cancer. And growing up, one of the things that I noticed was that individuals within my family and within other families could have very different responses to a cancer diagnosis. I'd always found this quite interesting, but hadn't really thought much about it.
00:00:46
Caroline Dorfman
And then when I went to college, I knew i had an interest in health care. I thought I might pursue a medical degree someday, but really wasn't sure what I wanted to be when I grew up. So my sophomore year, I go to the career center to talk with a counselor about career options.
00:01:02
Caroline Dorfman
And quite fortuitously, as I'm waiting for my appointment with the career counselor, I come across a brochure in the waiting room for research in psycho-oncology. I had never heard of the field of psycho-oncology before, but in looking at the research study, it amazingly reflected the observations I had growing up.
00:01:23
Caroline Dorfman
So had gone to undergraduate at the University of Pennsylvania in Philadelphia, and this was a study being run by researchers at the Children's Hospital of Philadelphia that was looking at the impact of a child's cancer diagnosis on their sibling.
00:01:37
Caroline Dorfman
And I thought, interesting, someone is researching kind of some of the observations that I had seen growing up that within a family, people may have different responses to cancer, different ways of understanding and adapting to a cancer diagnosis.
00:01:55
Caroline Dorfman
So I applied for this volunteer position and was accepted. And as I worked with this group, I really became interested in the work that psychologists were doing in the field of oncology.
00:02:09
Caroline Dorfman
I grew up outside of Washington, D.C., and so I know it's going to be home for this summer. So I started. contacting folks in the area to see if anybody was in need of a research assistant for this summer um that was working in the field of psycho-oncology. And so I reached out to some folks at Georgetown University's Lombardi Comprehensive Cancer Center, and they were at the time developing interventions to promote shared decision-making for men around prostate cancer screening, and then also looking at quality of life domains for prostate cancer survivors.
00:02:43
Caroline Dorfman
And this was very different work to the work I had been assisting with um at the Children's Hospital of Philadelphia. But it I knew that it would provide me with additional opportunities to learn about the work psychologists were doing in oncology.
00:02:58
Caroline Dorfman
um As I worked with this group, first as an intern and then as a research assistant, I began to really hone my interest in psycho-oncology. And I knew that I wanted to pursue graduate training in clinical psychology.
00:03:14
Caroline Dorfman
I also knew that I wanted to look for programs that had faculty mentors who were conducting psycho-oncology research. And this led me to pursue my degree in clinical psychology from The Ohio State University.
00:03:26
Caroline Dorfman
under the wonderful mentorship of Dr. Barbara Anderson, who had was doing at the time um some work developing psychosocial interventions for ah breast cancer survivors and survivors of oncologic cancers.
00:03:40
Caroline Dorfman
And i was very fortunate to be able to assist her with this work.
Research on AYA Cancer Patients
00:03:47
Dustin Mesick_ RDN
So, Dr. Dorfman, you've studied pain, fatigue, and distress in the AYA population. ah Can you tell us about your findings?
00:03:56
Caroline Dorfman
Yes, definitely. So once finished my training at The Ohio State University, I then matched at Duke University for my clinical psychology internship. And this is a really clinically intensive year.
00:04:11
Caroline Dorfman
And during the course of my clinical work, I began to learn more about the impact of symptoms on the lives of cancer patients, um the symptoms that they were experiencing during treatment, as well as the persistent symptoms that they were experiencing after they completed their cancer treatment, symptoms like pain, fatigue, and distress.
00:04:33
Caroline Dorfman
And as I was doing this clinical work, I also began to notice the differences in the um experiences with pain, fatigue, and distress for our younger cancer patients, um our adolescents or young adults, those that were diagnosed between the ages 15 and 39.
00:04:52
Caroline Dorfman
And when we think about our adolescents and young adults, they're really diagnosed during critical developmental periods where the presence of symptoms like pain, fatigue, and distress can be incredibly impactful. So this is a time when AYAs are working to achieve really complex age-related goals, things like and finishing their education or building their careers.
00:05:16
Caroline Dorfman
or establishing and fostering peer and romantic relationships or building their families. And one of the things that um we were seeing anecdotally and one of the things that we were seeing in prior research was the way in which pain, fatigue, and emotional distress can get in the way of AYA's achieving these important life goals.
00:05:37
Caroline Dorfman
um In diving deeper into the literature around this, One of the things that we found was that even though AYAs rate symptom management as being ah critical and significant issue in their transition to survivorship, their needs have largely gone unmet.
00:05:53
Caroline Dorfman
And one of the things that we also found was that AYAs lacked confidence in managing physical and emotional symptoms, both in our own research as well as in the larger literature, um and lacking confidence in managing these symptoms really impacted their ability to cope with their symptoms.
00:06:13
Caroline Dorfman
And prior studies suggest that AYs even have more difficulty coping with symptoms than older or younger survivors, in part due to the significant interference these symptoms can have on important life areas.
00:06:24
Caroline Dorfman
So both um kind of the clinical work I was doing plus the prior literature led us to want to develop a behavioral intervention for young adult survivors to help them gain skills to address their symptom management needs in the service of helping them to increase their self-advocacy for managing symptoms and being able to better engage with important areas of life.
00:06:49
Caroline Dorfman
So I was quite fortunate to receive a career development award from the National Cancer Institute under the mentorship of doctors Kevin Effinger and Rebecca Shelby here at Duke to fund our ability to develop and then do a preliminary evaluation of a symptom management intervention for AYAs.
00:07:09
Caroline Dorfman
As a formative first step, you know we had seen in prior literature and we had seen kind of anecdotally in our clinical work the impact of symptoms on our patients, but we really wanted as a formative step to understand pain, fatigue, and emotional distress in our own patients.
00:07:27
Caroline Dorfman
um So what we did was we interviewed young adult cancer survivors and their oncology providers to confirm that pain, fatigue, and emotional distress were in fact significant problems.
00:07:37
Caroline Dorfman
And for example, one of the findings that we had was we had asked um our participants to rank order um different concerns that they might have post-treatment.
00:07:49
Caroline Dorfman
And we found that pain, fatigue, or emotional distress were ranked as the primary or secondary concern by approximately 91% of our survivors and 81% of their providers.
00:08:02
Caroline Dorfman
um We also found that our survivors who had the had greater symptom burden, so more symptoms related to emotional distress, greater levels of pain, greater greater levels of fatigue.
00:08:16
Caroline Dorfman
These survivors um had lower self-efficacy for managing their symptoms. When we looked at the qualitative data, when we looked at their responses during the interviews, it really spoke to the level of interference that these symptoms had for our patients.
00:08:32
Caroline Dorfman
These symptoms served as reminders of their cancer, which contributed to the persistence of negative emotions and low mood. Survivors also acknowledged a sense of grief and loss around the impact that these symptoms had on their ability to achieve goals important to their life.
00:08:47
Caroline Dorfman
And so from this formative work, it really helped us with developing an intervention to help our young adult survivors better cope with symptoms and increase their confidence in coping with symptoms to help them better engage in life goals.
00:09:04
Caroline Dorfman
Right now, we're in the process of evaluating the feasibility and acceptability of this intervention. So hopefully more results to come.
00:09:13
Dustin Mesick_ RDN
Thank you for sharing that. I definitely as a cancer survivor who was diagnosed in 19 years old, I can really relate to a lot of what you shared is just as a cancer survivor, you just feel in that age group, like a fish out of water, where like older populations, they know other people that are also cancer survivors or doing treatment so they can like reach out.
00:09:36
Dustin Mesick_ RDN
But myself, I was like, I don't know anybody. That's like an old person problem.
00:09:41
Caroline Dorfman
Yes.
00:09:41
Dustin Mesick_ RDN
um And the chronic pain piece, I think is really hard too, because if you go to your doctor, they just say, it's probably related to your chemo. And you're like, okay, well, when's it going to go away? And they're like, it's hard to say.
00:09:52
Caroline Dorfman
yeah Yes, I appreciate your your comments on that. And that actually led us for this symptom management intervention to have it be group based.
00:10:05
Caroline Dorfman
So we each of our um each of the sessions associated with this intervention are conducted over Zoom and with other young adult cancer survivors participating together.
00:10:18
Caroline Dorfman
One of the things that we really wanted to do was to make sure that we provided an opportunity for our young adult survivors to meet other young adults and then also to provide the opportunity to really normalize their symptom experience.
00:10:32
Caroline Dorfman
So exactly like you were describing, many of these folks have never met another young adult cancer survivor. And so they don't know that it might be, though impactful, normal to experience symptoms post-treatment.
00:10:45
Caroline Dorfman
um And so it gave it gives them additional perspective around their own experience and it also gives them the opportunity to talk with somebody who gets how impactful these symptoms can be. And then they have the opportunity to share with one another about how well different strategies have worked for them for managing their symptoms.
00:11:04
Caroline Dorfman
So we found the group component to be quite nice as a way to provide that connection for our young survivors.
00:11:15
colinyourbluff
I love that. I think that's such a great way of having that addressed. And I just wanted to also clear hear're my throat there.
00:11:24
Dustin Mesick_ RDN
What's going on with your voice, Colin?
00:11:30
Dustin Mesick_ RDN
for
00:11:32
Caroline Dorfman
yeah
00:11:34
colinyourbluff
I really like that approach of having confidence in their ability or they perhaps perceived ability in being one of the um results for the the study, you know, and that the, the focus is on really achieving, um, that self-efficacy and coping strategies.
00:11:54
Caroline Dorfman
Yes, definitely. I think one of the challenges that we have is that, you know, we, with our intervention may not necessarily be addressing the physiological change that has led to the symptom.
00:12:07
Caroline Dorfman
And there may be ways to can to cope with the symptom so that we can reduce its level of interference in um in our patients' everyday lives so that they may still be able to engage in the things that are important to them while having a symptom,
00:12:25
Caroline Dorfman
while having it ah you know if even in the midst of um pain or fatigue, or they may be able to shift their behaviors in a way to kind of address their symptom in the moment so that it may not necessarily be as impactful moving forward.
Barriers to Oncofertility Care
00:12:45
colinyourbluff
Well, understand another area of research that you focused on is sexual reproductive health. ah Can you speak to maybe some barriers or barriers, whatever you want to say, right, to oncofertility?
00:12:58
Caroline Dorfman
Yeah, so, you know, because I focus on this adolescent and young adult population, I think about all the important life areas that may be impacted by their cancer and patient sexual functioning and their ability to have biological children in the future.
00:13:14
Caroline Dorfman
if that is something that is important to them, are two really crucial domains that don't get as much attention um in the oncology field. And so when we think about what's important to young people, having a fulfilling sex life is important to them, and also building a family is important to them.
00:13:33
Caroline Dorfman
And so one of the things that we have been working to address kind of in our larger teen and young adult oncology program is any gap areas that may be important to our patients but may not necessarily be at the forefront of um their minds in the moment or the minds of their teams or may not necessarily be a main focus of their cancer treatments. And so one of the things that we have seen in terms of barriers to oncofertility care for our young patients.
00:14:09
Caroline Dorfman
um There are many barriers that come up, but some of the ones that we hear from patients are things like not feeling like they have enough time to preserve gametes prior to starting their cancer treatments.
00:14:21
Caroline Dorfman
um One of the things that's been amazing with advances in technology is that it's actually decreased the amount of time needed for female patients to preserve eggs. um So now it's around two weeks needed for females, but not all patients have two weeks to go through this process.
00:14:38
Caroline Dorfman
or patients may not want to wait two weeks before initiating their treatment. They may want to jump right into treatments and not have any pauses. um Other barriers that exist may include things like lack of knowledge about fertility preservation or not knowing how to get connected to fertility preservation services.
00:14:58
Caroline Dorfman
And so one of the things that I've helped to do um with our larger team here at Duke is that in 2019, I helped to co-found our Oncofertility Steering Committee here at Duke that really brought together a multidisciplinary group of individuals to begin to think about how do we address barriers to Oncofertility care for our young patients.
00:15:23
Caroline Dorfman
um This led to us founding the Duke Oncofertility Program, which is housed within our larger supportive care and survivorship center. And our Oncofertility program provides patients and their families with education and psychosocial support for fertility preservation decision making.
00:15:42
Caroline Dorfman
We also help to facilitate rapid referral to fertility preservation services for cancer patients of reproductive age. through the use of um a designated nurse navigator who will talk with our patients, provide them with education, help them with placing referrals to ensure um that they get connected with our fertility center quickly, um usually within 24 to 48 hours so that we can reduce that time um to preservation and also helping to navigate patients through the process of preserving their fertility.
00:16:19
Caroline Dorfman
So one of the things that we've tried to do is as we notice barriers for our patients, um begin to develop programming through the Duke Oncofertility Program to help to address some of those barriers.
00:16:35
colinyourbluff
I think one of the first barriers that comes to mind is maybe just the cost and the cost prohibition of then having those procedures done, just knowing that it's going to cost money to have them preserved.
00:16:51
colinyourbluff
And that that might just be a little bit of a question mark of how long it will be preserved.
00:16:56
Caroline Dorfman
Yes, exactly. And, you know, in learning more about the barriers to family building for cancer survivors, one of the biggest barriers that came up, like you mentioned, was cost and the impact of cost on patients' fertility preservation decisions.
00:17:14
Caroline Dorfman
um Right now, to date, only 13 states have mandates for insurance coverage for fertility preservation. So as a result, patients often have to pay out of pocket to preserve eggs, embryos, or sperm.
00:17:27
Caroline Dorfman
And I can tell you North Carolina is a state that does not have an insurance mandate. So our patients who want to preserve have very high out-of-pocket costs to preserve eggs, embryos, or sperm. So for example, the cost to preserve eggs or embryos can range anywhere from $10,000 to $15,000. And this a amount doesn't include annual or monthly storage fees for the however long a patient would like to keep their gametes preserved.
00:17:58
Caroline Dorfman
And it also doesn't include the cost to use their preserved gametes in the future through methods like in vitro fertilization or having a gestational carrier. So if you think about, you know, the need to preserve gametes,
00:18:13
Caroline Dorfman
prior to the start of treatment, this is coming at a time when patients are already navigating expensive medical care and the expensive care that is to come related to their cancer treatments.
00:18:26
Caroline Dorfman
The other thing I think about too is, you know, this is a time, the time in life when AYAs are diagnosed is a time when they usually don't have financial reserves. It's not as if they've got you know a huge saving account somewhere where they can just dip into that to pay these large expenses.
00:18:44
Caroline Dorfman
So the cost of fertility preservation procedures can really exacerbate the financial toxicity associated with cancer treatments. And we had heard about this clinically from our patients.
00:18:56
Caroline Dorfman
um But we really wanted to further explore this in our research. So recently we embarked on a study in which we surveyed and interviewed young female cancer survivors, both who preserved and those who also did not preserve their fertility, to better understand the role that costs played in their fertility preservation decisions.
00:19:16
Caroline Dorfman
And in talking with these women, it really hit home the impact that cost plays. um Costs played a really significant role in their fertility preservation decisions.
00:19:28
Caroline Dorfman
And we heard from a lot of women how hard it was that cost was the reason why either they couldn't preserve their fertility or why another woman wouldn't be able to preserve her fertility and how impactful that was, especially in the context of them maybe having a desire for biological parenthood in the future.
00:19:51
Caroline Dorfman
One woman really equated the need to cover fertility preservation to the insurance covered mandates that exist for breast reconstruction following breast cancer mastectomy.
00:20:04
Caroline Dorfman
And she acknowledged you know that this was a medical problem being created by cancer. And if you don't mind, I'd love to share this quote with you that came from our data just because I find it to be so impactful.
00:20:14
Caroline Dorfman
She said, you know, if I can get the plastic surgery, why can't I get fertility treatment? I think it should be just as important.
00:20:21
colinyourbluff
Thank you.
00:20:23
Caroline Dorfman
If you can protect my outer image with plastic surgery, then why can't you protect my fertility, which is an essential organ for me? So I think it really hits home the fact that um You know, biological parenthood is important for patients and that cost can be one reason why patients wouldn't be able to do this. So we're really hopeful that our research will help to support ongoing advocacy work to promote insurance coverage for preservation.
00:20:52
colinyourbluff
I love that. I can certainly relate to a lot of what you're talking about and having to have gone through that procedure myself. um you know I refer to it lovingly as paying rent for my kids as far as they the preservation costs.
00:21:04
Caroline Dorfman
Yes. Yes.
00:21:07
colinyourbluff
um And it is difficult to then have that that window, like you were saying, as far as like the timing of treatment and when there can be that preservation of the gamut, uh, for the preservation.
00:21:24
colinyourbluff
So I, uh, you know, just wanted to then speak to that and, uh, say that, it yeah, it's, uh, certainly costly in, in something that is, uh, you know, an ongoing thing.
00:21:39
Caroline Dorfman
Yes, definitely. And I think the other piece that makes it so challenging for patients is there are a lot of unknowns about their fertility potential once they are done with treatment.
00:21:52
Caroline Dorfman
So for some patients, they may be able to have a biological child in the future um without the need of their preserved specimen. For other patients, that may not be the case.
00:22:03
Caroline Dorfman
And so oftentimes, patients are provided with a probability of impaired fertility or infertility in the future, and it's not always 100%. And so I think that makes the decision really even more complicated for patients.
00:22:19
Caroline Dorfman
The other thing, too, is that, you know, we talk a lot about preservation decisions, but there are a multitude of decisions that come up in the future for patients around family buildings.
00:22:31
Caroline Dorfman
Decisions related to how they want to talk to a partner about the fact that they may need to use a preserved gamete in the future. Decisions around which way to go. Do they, you know, try to, for a female, carry the pregnancy themselves? Do they try to use a gestational carrier?
00:22:53
Caroline Dorfman
And of all these different decisions along the way, that then can reactivate reminders and thoughts about their cancer experience. So we think about, too, the continued emotional impact that this has on our young patients as they decide how they want to grow a family.
00:23:15
Dustin Mesick_ RDN
Yeah.
00:23:17
colinyourbluff
You know, something I was going to just add on there is that I love how you highlighted the decisional process, that there's all these things to consider that, ah you know, the probability of that of impairment.
00:23:27
colinyourbluff
And my thought here is that it almost turns into a math problem, a very complex math problem. It's like, OK, well, ah what are these factors that can ah to continue consider to then really make the best decision, you know, for that individual?
00:23:32
Caroline Dorfman
Yes.
00:23:42
Caroline Dorfman
Exactly. And one of the things that um I think about a lot of times with my patients is thinking about what's important to them, what they value. and where their values may help to guide some of the decisions that they they need to make.
00:24:01
Caroline Dorfman
um You know, if it is somebody who has always viewed them themselves as becoming a parent someday, you know, that value may be a little different or sort of, i should say, kind of their decision associated with that value might be a little different than somebody who may not have always viewed themselves as being a parent someday.
00:24:21
Caroline Dorfman
And so I think about, you know, needing to have a lot of discussions with patients around what it is that's important to them and how they can begin to make these decisions in a way that's consistent with their values. The biggest challenge, though, then comes up is, you know, if somebody has a goal to become a parent that is part of their value system and then the cost is prohibitive.
00:24:49
Caroline Dorfman
What then does that do to a patient? What is the emotional implication that that has for them? And that's one area that we are continuing to explore in our research is how does this impact patients emotionally long-term as they might need to make a decision that is based on cost rather than their goals or values?
00:25:13
Dustin Mesick_ RDN
I can totally agree with that. Just, I was just thinking what, what you just said, just like, how does that add to like the overall distress of this individual who now has a barrier to their life dream to have be a mother or a father?
00:25:30
Caroline Dorfman
Exactly. And I think that is one of the the areas that has been less less explored in the research, in the literature. um we And this is one area where I'm very cognizant, even within our own oncofertility program, that we are continuing to have these discussions with patients. If we help them to preserve and then someday they will go to use their specimens and they can't afford it, well, what is that going to do to them emotionally?
00:26:04
Caroline Dorfman
If we have a patient who really wants to preserve and can't preserve because of cost, what is that doing to that patient emotionally? And so making sure that they're aware of all of their options along the way.
00:26:15
Dustin Mesick_ RDN
Thank
00:26:15
Caroline Dorfman
And then one of the things that we are incredibly fortunate to have um here at Duke is, you know, with our patient navigator, she can help our patients to know what resources might exist to help mitigate costs.
00:26:32
Caroline Dorfman
whether there are grants a patient can apply for or any philanthropic support that a patient might be able to um apply for. We're very, very fortunate to have received some funds from the I'm Not Done Yet Foundation um to help us mitigate the cost of fertility preservation for some of our patients um through the philanthropic donations and partnership that they've played with our oncofertility program.
00:27:02
Caroline Dorfman
um And I recognize that not every institution has this, has this type of resource. And so I think about kind of more broadly um the impact that um costs may have on, you know, the You know, there are only 13 states right now that have mandated insurance coverage. So the remaining states that don't have insurance coverage mandate, you know, those states may be needing additional, may need to have programs that have resources to help their patients as well.
00:27:37
Dustin Mesick_ RDN
Absolutely.
00:27:39
colinyourbluff
I think one that comes to mind is maybe like the Surviving and Moving Forward ah Fund. um I know that they have ah a wing that's specifically dedicated to family building exercises and and grants available for the adolescent young adult population.
00:27:50
Caroline Dorfman
Mm-hmm. Mm-hmm.
00:28:00
Dustin Mesick_ RDN
Yeah, that would be that'd be great, Colin. Great idea. ah Lastly, you you're specialized in studying health behavior issues and specifically barriers to overall well being in the cancer population.
00:28:14
Dustin Mesick_ RDN
Can you tell us about this research?
00:28:17
Caroline Dorfman
Yeah,
Post-Treatment Health Challenges
00:28:18
Caroline Dorfman
definitely. So I think about this research as kind of combining some of the symptom management work that we have done with also recognizing the long-term and late effects that are faced by our cancer survivors.
00:28:33
Caroline Dorfman
um And, you know, because so much of my work is within the AYA realm, you know, one of the things that I think about with our AYAs is, you is that you know while advances in treatment have really resulted in, you know i think the latest statistic is more than 80% of AYAs will survive more than five years after their cancer treatment, the long-term and late effects that they might experience um can be impactful as I've kind of alluded to before.
00:29:02
Caroline Dorfman
um One area that is particularly um impactful is cardiovascular disease. um Cardiovascular disease is a leading cause of death for cancer survivors and has become a growing public health concern for survivors who are diagnosed AYAs.
00:29:21
Caroline Dorfman
So the longer that they are living, the more we are seeing the impact that um ah cancer treatments can have on cardiovascular functioning as well as kind of the ah the health behaviors of AYA's and how those may impact their cardiovascular disease risk.
00:29:41
Caroline Dorfman
So one of the latest statistics is that AYA survivors have more than a two-fold risk of cardiovascular disease when compared to age-matched peers and have a significantly greater risk of cardiac mortality.
00:29:56
Caroline Dorfman
and Like I mentioned before, this risk may be associated with their treatment exposures and may be potentiated by weight gain and poor health behaviors. So when I talk about you know poor health behaviors, these are things like healthy eating and physical activity.
00:30:10
Caroline Dorfman
We know that these are key behaviors for weight management, but they're also behaviors that are important for um cardiovascular disease risk. um This AYA period is a time where most AYAs are...
00:30:27
Caroline Dorfman
beginning to establish lifelong health behaviors. And so if you think about someone being diagnosed with cancer during this time period, they may not be able to engage in physical activity in the same way that their peers might. They may not be, um their diet may be a little bit different than their peers due to kind of nausea they might be experiencing from their cancer treatments due to um different foods that they may be told they should or should not be eating during treatment.
00:31:00
Caroline Dorfman
And because of this, one of the things that we see is few AYAs actually adhere to recommended guidelines for healthy eating or activity. And they oftentimes struggle to manage diet and improve nutrition and increase activity after cancer treatments.
00:31:19
Caroline Dorfman
and So one of the things that we also see from are kind of our general work with cancer survivors as well as um with our AYA survivors is that their efforts to engage in positive health behaviors like adhering to exercise and nutrition recommendations can really be impacted and challenged by the persistent cancer-related symptoms that they may be experiencing. The things like the pain, the fatigue, the emotional distress,
00:31:49
Caroline Dorfman
that I was describing earlier. um This has really led us to begin to adapt one of our prior interventions, which combines healthy lifestyle behavior change strategies with behavioral symptom management strategies to help us begin to develop a program for AYAs to allow them to better manage their health better manage their symptoms in the service of helping them to engage with healthy lifestyle behaviors, like increasing their physical activity and um shifting their dietary patterns.
00:32:31
Caroline Dorfman
So this is an area that we're excited to be moving forward on and an area that we are really um working to try to um improve among our AYAs.
00:32:44
Dustin Mesick_ RDN
Yeah, as a AYA cancer survivor myself, I could definitely really relate to, you know, you you're fatigued, you have pain, you have distress, you're fish out of water.
00:32:58
Dustin Mesick_ RDN
And then it's like hard to to continue what you used to do.
00:32:58
Caroline Dorfman
Mm-hmm.
00:33:03
Dustin Mesick_ RDN
And then time passes, then it's been five years, maybe it's been 10 years.
00:33:05
Caroline Dorfman
Mm-hmm.
00:33:07
Dustin Mesick_ RDN
and you're not eating the best, you're um not not exercising as much because you can't.
00:33:08
Caroline Dorfman
Mm-hmm.
00:33:16
Dustin Mesick_ RDN
And then it's like it's and then you're these are your habits. Now you have like counter healthy behaviors or habits, which is the opposite of what you want. So it's like this vicious cycle that's feeding itself.
00:33:31
Caroline Dorfman
Exactly. And that's one of the the challenges that we found with cancer survivors more broadly is that there are habits and patterns that develop when someone is going through treatment that are hard to shake after treatment.
00:33:47
Caroline Dorfman
And so that's where our programming comes in to begin to think about, well, what are some actionable things that people can do? And that's sort of where the behavioral piece of our interventions come in is what can folks do to begin to shift their patterns, to shift their behaviors? And the other thing too is that we recognize that what works for you know one population may not necessarily be the same strategy as that another population may be interested in.
00:34:20
Caroline Dorfman
So, you know, one of the things that we are very cognizant of doing um within our our larger teen and young adult oncology program and within our research is really try to think about what our patients need, how we can fill gaps, and use information directly provided by our patients to help us to do this.
00:34:40
Dustin Mesick_ RDN
Mm-hmm.
00:34:46
Caroline Dorfman
I don't ever want to pretend as a researcher that I know what the experiences of my patients are without having heard directly from them. And so with all of our um interventions that we develop, we talk to our patients.
00:35:00
Caroline Dorfman
we really get a good understanding of what their experience has been so that we can begin to tailor our programming for those populations. So I'll give you an example of this with our ah program to help to address cardiovascular disease risk factors.
00:35:17
Caroline Dorfman
One of the things in talking with um young patients that we began to understand is, you know, our younger patients want more of a focus on body positivity and promoting a positive body image while also connecting with health-related goals.
00:35:33
Caroline Dorfman
Whereas with some of our older patients who might be more focused on weight loss, we are wanting to make sure that this program also focuses on helping to promote a positive body image Another thing is that with our younger patients, they might not be as familiar with the metrics used by medical providers around cardiovascular disease risk, like blood pressure metrics, cholesterol metrics.
00:35:59
Caroline Dorfman
um They may not know what hemoglobin A1C is or how these factors, this and weight and BMI, might all interact to kind of provide information about cardiovascular disease risk. And so You know this program will also provide education and a focus on metrics rather than necessarily saying you need to get to this BMI or this way.
00:36:24
Caroline Dorfman
But how do all of these numbers work together to help to um contribute to your risk?
00:36:32
Dustin Mesick_ RDN
I really liked what you said about like tailoring the a specific intervention to the the the patient. You know, as ah I'd say in some ways in my early adulthood, I was a professional patient.
00:36:44
Caroline Dorfman
Mm-hmm.
00:36:44
Dustin Mesick_ RDN
which led me down the line to becoming a dietitian because I was like, that's one area I can i can definitely choose and affect my overall health.
00:36:48
Caroline Dorfman
Mm-hmm.
00:36:53
Caroline Dorfman
Yes.
00:36:53
Dustin Mesick_ RDN
um But just realizing as a cancer survivor, you're now different. You go to the physical therapist, maybe in the past, you just did all their physical activity and you were like, boom, she's super strong.
00:36:58
Caroline Dorfman
Mm-hmm.
00:37:05
Dustin Mesick_ RDN
But now you're like, wow, I'm really tired. Oh, it's really hard.
00:37:08
Caroline Dorfman
Mm-hmm.
00:37:08
Dustin Mesick_ RDN
My body feels... exhausted for multiple days after PT before I could do it like every other day or every day.
00:37:13
Caroline Dorfman
Mm-hmm.
00:37:16
Caroline Dorfman
Right. Right. Exactly. And that's one of the things that has been really challenging for ah for our patients is when we talk to them about where they would like to be in terms of their physical fitness level, in terms of their overall abilities, there's a lot of grief and loss around change in ability and the fact that
00:37:42
Dustin Mesick_ RDN
Mm-hmm.
00:37:43
Caroline Dorfman
They may be starting from a different place than they they were beforehand. And the other thing that I hear from so many of our young patients is their lack of understanding of how they could have gotten diagnosed with cancer because they were like the picture, they picture perfect health before their diagnosis, right?
Fostering Self-Compassion
00:38:02
Caroline Dorfman
Like I was eating healthy, i was running marathons, I was, you know, in tip-top shape.
00:38:07
colinyourbluff
How could this happen?
00:38:09
Caroline Dorfman
How could this happen?
00:38:09
Dustin Mesick_ RDN
yeah
00:38:09
colinyourbluff
Sorry.
00:38:09
Caroline Dorfman
Right. Like this, you know, especially because we think about, you know, all the risk factors for ah for cancer. Right. These are folks who, you know, it doesn't make sense from the traditional standpoint.
00:38:23
Caroline Dorfman
And so that's another thing that we talk to our patients about is, well, how do you get back to where you were? How do you move forward with your, uh,
00:38:35
Caroline Dorfman
move forward with your activity in a way that might need to be at a different pace or doing things in a slightly different way to help you get closer to where you were.
00:38:46
Caroline Dorfman
And I think that can be really frustrating for patients.
00:38:50
Dustin Mesick_ RDN
Absolutely.
00:38:52
colinyourbluff
Well, Caroline, I wanted to just thank you so much for kind of highlighting some of those decisions that have been made um as far as ah from a systemic and and from a program perspective on patient-driven interventions.
00:39:07
colinyourbluff
I really liked hearing about that the distinction for the adolescent young adults to then really want to focus on body positivity rather than that weight loss and having that be a specific goal and ah
00:39:16
Caroline Dorfman
Thank
00:39:23
colinyourbluff
intervention cater to that goal
00:39:29
colinyourbluff
at Duke University.
00:39:31
Caroline Dorfman
you.
00:39:33
colinyourbluff
lot of pause there just to say Duke University, right?
00:39:42
colinyourbluff
But I just wanted to, again, thank you so much for being a guest for today and just sharing your ah research that you've been doing at Duke University. Dustin, you have anything else you wanted to then specifically add or ah question at this time?
00:39:58
Dustin Mesick_ RDN
I just love what you said, Colin, about like focusing more on body positivity rather than weight loss. Because like, it's now like, bringing in this like patience with your body, which is maybe for a young person, never something they ever had to have. That's something that an older person has to deal with.
00:40:17
Dustin Mesick_ RDN
So I like, I like what you said there.
00:40:17
Caroline Dorfman
Right.
00:40:20
colinyourbluff
It's a problem for future Dustin, right? and Yeah, I think it's a more self-compassionate approach.
00:40:27
Caroline Dorfman
Yes.
00:40:28
colinyourbluff
So I...
00:40:28
Caroline Dorfman
Yes. And I think that's one of the things that we've learned from our patients is that sometimes they can be pretty hard on themselves and hard on themselves in a way that may not necessarily reflect anything that was in their control in the first place.
00:40:46
Caroline Dorfman
And so that's one area that, you know, when we talk with our patients, we talk with them about kind of self-compassion, being kind to themselves and the way that they would treat other people in their lives. We are usually...
00:41:02
Caroline Dorfman
the least kind to ourselves. And if we treated ourselves in the same way that we treated those around us, we might actually have a slightly different perspective on our experiences. And so that's one of the things that we really talk to with our patients a lot around um just that that compassion for themselves that they may have and how ways to foster that compassion.
00:41:31
colinyourbluff
Well, thank you so much for being our guest um for this episode and sharing your expertise in the psycho-oncology field. um But yeah, I just wanted to extend my my gratitude there.
00:41:49
Caroline Dorfman
Well, I so ah appreciate being here with you both. And um thank you for giving me the space to share some of the work that we've been doing.