Specialized cancer testing; cancer and social media: Upstate Medical University's HealthLink on Air for Sunday, Sept. 29, 2024

Host Amber Smith: Coming up next on Upstate's "HealthLink on Air," the Upstate Cancer Center medical director tells about a new law in New York state that will help cancer patients who need biomarker testing.

Thomas VanderMeer, MD: ... In cancer, biomarkers are molecules that indicate if cancer is present, what abnormality is causing the cancer to grow, how active it is, and how it will respond to different types of treatment. ...

Host Amber Smith: And a pediatric oncologist will discuss how parents are using social media while a child is in treatment for cancer.

Amy Caruso Brown, MD: ... When we asked people specifically, why did you turn to social media related to your child's diagnosis? there were a whole host of overlapping reasons, but the biggest one, the one 90% of the participants cited, was for emotional support. ...

Host Amber Smith: All that, plus a visit from The Healing Muse, right after the news.

This is Upstate Medical University's "HealthLink on Air," your chance to explore health, science and medicine with the experts from Central New York's only academic medical center. I'm your host, Amber Smith.

On this week's show, we'll learn how parents with children and cancer treatment are using social media. But first, what is biomarker testing? And how will a new law in New York state help cancer patients who need it?

From Upstate Medical University in Syracuse, New York, I'm Amber Smith. This is "HealthLink on Air."

New York Governor Kathy Hochul signed a bill just before Christmas that requires health insurers to cover life-saving cancer biomarker testing, which allows for targeted treatment. To understand more about how this bill will help people, I'm talking with Dr. Thomas VanderMeer, the medical director of the Upstate Cancer Center, and Mr. Michael Davoli, who is the American Cancer Society's senior government relations director for New York.

Welcome to you both.

Thomas VanderMeer, MD: Thank you, Amber.

Michael Davoli: Thank you.

Host Amber Smith: Let's begin, please, with a description of what cancer biomarkers are and how they differ from genetic testing and why this has become important in cancer care. Dr. VanderMeer?

Thomas VanderMeer, MD: There's lots of different kinds of biomarkers, but in general, a biomarker is a test to measure something that's happening in our bodies. In cancer, biomarkers are molecules that indicate if cancer is present, what abnormality is causing the cancer to grow, how active it is, and how it will respond to different types of treatment.

In the past few years, there have been major breakthroughs in our understanding of how cancer works and how to design treatments that target specific molecules and spare the rest of the body the toxicity of conventional chemotherapy. Some biomarker testing is done with blood tests and some requires tissue from a biopsy.

Genetic testing refers to, generally, a blood test that looks at what genetics we're born with. We call that germline testing. That differs from this type of testing, which evaluates the specific molecular alterations in the cancer cell.

Host Amber Smith: So this sounds like it's fairly new. How long has it been that biomarkers have been a tool for cancer care providers?

Thomas VanderMeer, MD: We go back to 2001, when the FDA (Food and Drug Administration) approved the first drug called Gleevec, that is designed to target a specific protein on a cancer cell. This was very new at that time. That drug was incredibly effective against a couple of rare cancers, but the concept was so exciting that the FDA approved it in about 2 1/2 months.

Since then, molecular targets and their biomarkers have been identified in many different cancers with numerous new drugs created to interfere with cancer cell growth. And now there are so many potential molecular targets for treatment that testing is done on a panel of over 300 molecular alterations.

Host Amber Smith: So at this point, which cancers is biomarker testing used in the most?

Thomas VanderMeer, MD: Well, it's increasing. All cancers have, or can have, molecular targets for treatment. They're most commonly seen in non-small cell lung cancer, melanoma, breast and colorectal cancer. But 37 of those 62 anti-cancer drugs launched in the past five years require bar biomarker testing to determine effectiveness, and increasingly we're finding that these new drugs work against more and more types of cancer.

Host Amber Smith: Do you ever have patients who need this, who need biomarker testing or would benefit from it, but whose insurance companies won't pay for it? Do you see that happen?

Thomas VanderMeer, MD: Oh, definitely. And that's why this is so exciting.

My practice focuses on pancreatic cancer. And the typical policy for insurance companies is that they only cover biomarker testing for patients with metastatic disease. But as a surgeon, I see early-stage pancreatic cancer, and we've had a number of patients where we wanted to get biomarker testing, and we figured out how to do it one way or another. And they received targeted treatment, which would be different than the treatment that they would receive if we didn't know about the specific molecular alteration in their cancer. And we've had patients who had the cancer completely eradicated, and there was none seen on surgical specimen.

Host Amber Smith: Wow. So when you say targeted treatment, can you describe what is meant by targeted treatment and how it compares to, I guess, traditional treatment?

Thomas VanderMeer, MD: Well, traditional chemotherapy agents interfere with cell growth throughout the body. They focus on growth patterns that tend to be more common in cancer cells. But all cells get affected, so there can be significant toxicity. These newer targeted treatments modify specific molecular processes that are unique to cancer cells and interfere with cellular signals that cause cancer cells to grow or limit our own body's immune response to fight the cancer. So as a result, there's much less collateral damage to normal cells because the activity of these drugs is so much more specific and limited.

And with newer targeted treatments coming down the line, they're using the molecular profile of a person's individual cancer to design custom vaccines or to reprogram a patient's own immune cells to kill their cancer.

Host Amber Smith: Mr. Davoli, do I understand correctly that this bill was needed because only about a third of health insurers in New York were paying for biomarker testing?

Michael Davoli: Yeah, that is correct. While all insurance plans in the state cover some biomarker testing for some patients, only around 31% of commercial plans cover what is considered comprehensive testing. And in addition, Medicaid does not cover comprehensive testing either. So Medicaid covers some testing for some patients.

So for example, a commercial plan or Medicaid may cover testing for, say, breast cancer only, but no other cancer. But they also may say we're going to cover it if it's a Stage 3 or Stage 4 diagnosis, but we're not going to cover it for an earlier stage. So comprehensive biomarker testing, which is what this bill would achieve, requires coverage for all testing for all diseases and at all stages, when medically appropriate.

Host Amber Smith: You mentioned Medicaid. What about Medicare, for seniors? Does that cover biomarker testing?

Michael Davoli: Yeah, luckily Medicare already covers comprehensive biomarker testing. Since that's governed by the federal government, they established this in law several years ago. But Medicaid, on the other hand, the rules are governed sort of on a state-by-state basis.

And so Medicaid only covers some testing for some patients, similar to the way the commercial market. And in a state like New York, when you've got around 8 million people that are on Medicaid, that is so critically important.

Host Amber Smith: Do you know if biomarker testing is covered in other states?

Michael Davoli: Well, so New York state just became the 13th state in the nation to enact comprehensive biomarker testing. New York joined states like California, Texas, Rhode Island, even Arkansas and Louisiana. So it's a real mix of sort of larger and smaller states that have done this. And I do know that there are efforts underway in all 50 states to establish comprehensive biomarker laws similar to the one we now will have here in New York.

Host Amber Smith: Are you familiar enough with the language of this bill to tell whether does it account for the advances in biomarker testing that are bound to happen in this field?

Michael Davoli: It does. And and that's one of the exciting things about the bill is it's really a, it's not a cancer bill per se, it's a science bill. It's a pro-science bill that sets out a set of criteria that says if different tests for biomarkers meet these different sets of criteria, then they must be covered. And there's a list of different types of criteria, and as long as the test meets one or more of those sets of criteria, it would be covered.

So for example, if something is an FDA-approved test for that disease, it would be covered. Or if there are national guidelines, set out for a certain type of disease and a test, it would be covered. If there is a Medicare approval already for that type of test, it would be covered. And so a test that, say, didn't exist 10 years ago, or even five years ago, but that is developed in the future, as long as it meets those criteria in the bill, it would be covered.

And a perfect example of this is, as the doctor mentioned, you know, you have individual tests for individual biomarkers that have been going on for 20 years where we've been able to sort of, say, test one biomarker at a time. But increasingly, we have companies that are developing these biomarker tests that are these multi-panel tests that really look for every known biomarker that exists within a patient's own blood sample. And the bill allows for coverage of that, if it's medically appropriate and if it meet one of those standards. So, like I said, it really is a pro-science bill that's going to evolve with the science as it develops moving forward.

Host Amber Smith: Does the bill say anything about whether insurers need to pay for genetic testing to see if a particular cancer gene runs in family members, for instance?

Michael Davoli: That's the one area where there is a lot of confusion. So this bill specifically does not deal with genetic testing and whether or not someone is likely to develop a disease in the future. It is focused exclusively on biomarker testing for the purposes of treatment rather than looking to see if someone is predisposed for cancer. So it does not cover that type of genetic testing for predisposition.

Host Amber Smith: You're listening to Upstate's "HealthLink on Air" with your host, Amber Smith. I'm talking with Dr. Thomas VanderMeer, the medical director of the Upstate Cancer Center, and Michael Davoli from the American Cancer Society. He's the senior government relations director for New York. We've been talking about a new law in New York requiring health insurers to pay for biomarker testing.

How soon does the bill take effect, and how quickly would patients who need biomarker testing have it covered?

Michael Davoli: So the bill takes effect on Jan. 1st, 2025. So it'll be next year. However, we do know that putting this bill in place, a lot of insurance plans are already starting to add this comprehensive testing. So like I mentioned, 31% of commercial plans were not covering comprehensive testing. Well, that does mean that the majority were covering testing already, voluntarily. And so what we believe this is going to do is ensure that everyone's covering it beginning Jan. 1st, but in the meantime, we do believe more and more insurance companies are going to add this coverage benefit because they see the value of it.

And now that they see the law that's on the books, they're going to recognize that they might as well start doing this for the benefit of their patients.

Host Amber Smith: Dr. VanderMeer, can you walk us through how a hypothetical person might learn that they would benefit from biomarker testing?

Thomas VanderMeer, MD: The most common gene panel that's looked at is called FoundationOne. And on their website there's a table that shows based on what type of cancer, what different molecular alterations there might be, and it even says which drugs are available too,to treat those. There's also guidelines published by the National Comprehensive Cancer Network, for each type of cancer, and so people can get information about that.

Generally just medical oncologists are very aware of this, that they are really enthusiastic about all these targeted therapies and the rapid growth in their ability to use targeted therapies. So, usually just talking to your medical oncologist will be probably the easiest and best way to do it.

Host Amber Smith: So is this what happens almost immediately after you learn that you have cancer? Is this the next step is to find out whether a biomarker test could help?

Thomas VanderMeer, MD: It hasn't been, because we haven't been able to get it approved. But I think with this bill, especially in the states where it's being enacted, that will increasingly be the case.

Host Amber Smith: So is it like going to a lab for blood work, generally? I know you said sometimes there's a biopsy, but often is it a blood draw, and then you wait a certain amount of time to get the results?

Thomas VanderMeer, MD: There are blood tests. What we find more useful, though, is a test on the biopsy specimen itself, because the alterations are frequently different in the cancer itself compared to what we see in the blood. All cancers are diagnosed with a biopsy. So if it's a solid tumor, like, say, lung cancer, then there's a biopsy of that. But even leukemias, there's a bone marrow biopsy. And so, these tests can be run on any specimen.

Host Amber Smith: Is this a test where the results come back either yes or no, or is there more interpretation needed?

Thomas VanderMeer, MD: The tests come back, and it'll say which molecular alteration is present and give you a lot of specific information about that. And the gene panels are really targeted to what would be actionable in terms of treatment. So they're all set up with a specific goal of identifying changes that would impact treatment.

Host Amber Smith: So is treatment sort of put on hold until you get the results back, or are there certain parts of treatment that you would start ahead of time?

Thomas VanderMeer, MD: Yeah, well we like to get the results back as quickly as possible. It usually takes from the time of the request, the tissue has to be sent out to another lab. Once that lab gets it, it takes about 10 days to get the information back. So it's usually about two weeks. So it depends on the severity of the cancer. If people can wait those two weeks without much harm, then a lot of times we would wait to get that information back.

Increasingly, larger institutions are trying to bring those tests in-house. So that we get the information more quickly.

Host Amber Smith: If a person finds out they have a particular biomarker, does that mean that their children or other family members will have the same biomarker?

Thomas VanderMeer, MD: No. The biomarker on the tumor is typically unique to the tumor. The germline testing, which is what we're born with and is the composition of all of our cells, that is heritable. And so if you take, say, like a BRCA mutation that may be in your gene line. That would be passed on to your children. That runs in your family. That's also going to be present on your tumor cell, most likely, but there may be other changes in the tumor cell that have occurred during your lifetime and have caused that cell to change from a normal cell to a cancer cell. And that's why the most important testing is done on the biopsy specimen itself.

Host Amber Smith: And BRCA, that's the breast cancer gene?

Thomas VanderMeer, MD: Yeah. The BRCA mutation put you at risk for other cancers, too.

Host Amber Smith: Okay. Gotcha.

Now, when this bill passed, there was talk that it was going to help reduce health disparities. Can you explain how?

Thomas VanderMeer, MD: Yeah. Well, the out-of-pocket costs for the most commonly used panel is $3,500. And so, as was mentioned earlier, there's 8 million New Yorkers on Medicaid, and they probably don't have $3,500 to pay for this. So if you think about it, if you don't have access to biomarker testing, then you don't have access to these newer targeted treatments. And so every new advanced drug that comes out is widening health care disparities. Because there's more and more treatments that are unavailable to people in lower socioeconomic groups.

Michael Davoli: When you look at who has access to biomarker testing currently in New York state and as well as nationwide, it's really fascinating. If you are a person of color or if you are lower income, but also if you are from a rural area, or if you get your health care from more of a community center as opposed to an academic center, you are less likely to get access to comprehensive biomarker testing. So, for example, if you get your cancer care, your medical care, from an FQHC (federally qualified health center), maybe they do biomarker testing, but then they need to ship it out to a lab. It takes time. And then it comes back and everything. As opposed to if you are getting your treatment at a academic center where they literally do the biomarker testing right there in-house, and they and run it through their processes, it can speed up that process in order for getting you that care.

As well as some of the larger cancer centers that have larger endowments and money will often cover the cost of biomarker testing for you, as opposed to if you were in a community center where they just simply don't have those resources. So that's why this is so important that it really kind of levels the playing field and brings everyone up to that comprehensive level.

Host Amber Smith: The Upstate Cancer Center is part of an academic medical center. You used the term FQHC. What is that?

Michael Davoli: So that's a federal qualified health center. So these are the health centers that provide health care for a lot of our lower income folks, our Medicaid patients. They exist in New York City, but a lot of the urban areas across the country, and they provide treatment for millions of patients every single year. And they simply, they're not going to have the type of resources that a place like Upstate Medical would.

Host Amber Smith: Now you both specialize in cancer, I realize, but biomarker testing is being used in other areas of medicine. Does this New York bill address any other diseases besides cancer?

Michael Davoli: That is, again, that's one of the exciting things about this bill is that it's not a cancer bill, per se. It's actually disease agnostic. So, while biomarker testing is primarily being used in the treatment of cancer currently, there's research being done in a whole host of different medical conditions -- everything from mental health issues to heart disease, a lot of different neurological conditions, even Parkinson's and ALS (amyothrophic lateral sclerosis) there's research being done on biomarker testing and how they can be used for the treatment of those diseases.

What this bill explicitly says is if the science shows that biomarker testing can be used to treat that disease, then it should be covered by the law, and the testing should be covered by your insurance.

Now, for example, just this past spring, a test for preeclampsia (a condition that can endanger a pregnancy) was approved by the FDA that would help doctors determine whether or not a patient of theirs needed to go on bed rest at home for a month, or if they needed to come to a hospital and spend potentially a month at the hospital prior to delivering their baby. And so you can imagine the mental and financial cost savings that would be if a patient could do bed rest at home versus having to spend a month in the hospital.

That test was just approved by the FDA back in April and now will be covered by this law because it meets that standard of FDA approved for the purposes of treatment. So that's just one example of how this law is going to go way beyond cancer in the future. As long as there is the medical science that sort of meets those standards laid out in the bill, the test would be covered regardless of what type of disease it is.

Host Amber Smith: Well, that's good to know. I want to thank both of you for making time for this interview.

Thomas VanderMeer, MD: Thank you, Amber.

Michael Davoli: Thank you so much. Thank you, Amber.

Host Amber Smith: My guests have been the medical director of the Upstate Cancer Center, Dr. Thomas VanderMeer, and the American Cancer Society's senior government relations director for New York, Mr. Michael Davoli. I'm Amber Smith for Upstate's "HealthLink on Air."

Parents of kids with cancer find one another on social media -- next, on Upstate's "HealthLink on Air."

From Upstate Medical University in Syracuse, New York, I'm Amber Smith. This is "HealthLink on Air."

You can find lots of information on social media, but how much of it can you trust, especially if you're a parent with a child going through cancer treatment? Upstate's Dr. Amy Caruso Brown is one of the researchers who explores this topic in a paper for the journal Pediatric Blood and Cancer.

Dr. Caruso Brown is an associate professor of bioethics and humanities and of pediatrics at Upstate, and she specializes in pediatric hematology/oncology.

Welcome back to "HealthLink on Air," Dr. Caruso Brown.

Amy Caruso Brown, MD: Thank you for having me.

Host Amber Smith: Let's begin by first explaining how this research was done.

Amy Caruso Brown, MD: This is a study that started a few years ago, back before COVID, and we were interested in talking to families of children with cancer about their experiences using social media, and in particular using social media to find information related to the care of their children with cancer.

We ended up with a study with 90 parents of children with cancer. Some had finished therapy, some were going through therapy, so they were at all different time points in their journeys, and we recruited them through nonprofit organizations that support families of children with cancer.

Host Amber Smith: Was there a questionnaire that you gave to them? Or how did that work?

Amy Caruso Brown, MD: In the first part of this study, we put out flyers mostly on social media, shared by these organizations and invited people to contact us if they were interested in participating.

When they reached out, we gave them a little information about the study: what we were planning to use the data for, risks and benefits of participation -- the usual things that we would share in research, and if they agreed to participate, we sent them a link to an online questionnaire that asked them about their experiences.

And then we also asked them if they would be willing, after filling out the questionnaire, to participate in a follow-up interview. And if they agreed to participate in a follow-up interview, we had a Zoom call, not dissimilar to being on a podcast, where we recorded and asked them questions about their experience. We asked them some follow-up questions based on their questionnaire responses, and those usually took about an hour to complete.

Host Amber Smith: How did you go about analyzing their responses on the questionnaires?

Amy Caruso Brown, MD: So, we used one, one of several different approaches to qualitative data. Qualitative data is narrative data, words, information, interviews, it could be focus groups. There's lots of different kinds of qualitative data. If you wanted to analyze, as I did in another study, how people write about pediatric cancer treatment refusal in newspapers, that would be a way of looking at qualitative data. So this kind of qualitative data was written data from the questionnaires, and then the transcribed data from the interviews. We actually had a service who took all of the interviews and wrote down everything that was said and sent it back to us.

And then the approach we used was called thematic analysis. So we had a research team that consisted of about six people, and we were going through those questionnaire answers and those transcripts, coding or sort of looking for themes that reoccurred in response to some of the questions we asked, or sometimes they would come up later in several different questions. And over a pretty long process in thematic analysis, eventually we agreed upon the major themes, we agreed upon the connections between those themes, how did they relate to each other, and then we went back through all the data again with that framework in mind to see what we could find out.

Host Amber Smith: Now, in your study, I'm curious about what social media counted: Facebook groups, or are you talking about just being online and Googling things?

Amy Caruso Brown, MD: Internally, we defined social media, and this wasn't the way we described it to parents because it's not the easiest way to understand, but the specific definition we used for ourselves was anything where you dynamically create and share content, rather than merely obtaining information, which when we asked the parents, we had a couple of screening questions for eligibility. We didn't say you had to create content, but you had to be using sites where content could be created, so it wasn't just typing into a search engine, but it might've been just typing into Facebook and saying, "Let me see what hits that come up with this."

So, some of the parents in the study described being more passive in their use, where they consumed things other people had created in their search for information.

And some parents had much more of that sort of multidirectional exchange, where they were producing information that was consumed by other people as well as gathering their own information for their own use.

Host Amber Smith: Did the parents explain what led them to turn to social media? Was this something they stumbled into or did they actively go looking?

Amy Caruso Brown, MD: There's sort of two ways to answer that question. The bigger one is that most people didn't have to turn to social media because they were already using it quite a bit. Some of our questions asked about your baseline social media use before their children were diagnosed, and most people were already regular users of social media with variable frequency.

But I don't think I had anyone who said they created, say, a new account just because their child had been diagnosed with cancer. So I think that's the first, and maybe most important, thing to understand, is that we turn to social media when we're diagnosed with a serious disease or have a family member going through treatment for a serious disease because we're already using it.

And parents, in particular, if you think about the generation that have younger school-age children, this has been around for a really long time now. People have been turning to it for all kinds of things, like, "My child's still wetting the bed. What are some potty training strategies I can use?"

And so in some ways, looking for information related to their children's diagnosis of cancer was just a super-normal part of everyday life. It just fit into the framework of what they were already doing. But when we asked people specifically, why did you turn to social media related to your child's diagnosis? there were a whole host of overlapping reasons, but the biggest one, the one 90% of the participants cited, was for emotional support.

Host Amber Smith: So, in terms of results, how many parents said that they had information from their child's oncologist that conflicted with information they found on social media?

Amy Caruso Brown, MD: That was one of the main questions that motivated us to do this study, was an interest in understanding how frequently conflicting information comes up and how people navigate it. And so, 70% of our participants said that that had happened to them, that they had read or been told something on social media that was in conflict with what their pediatric oncologist had told them.

Host Amber Smith: What sorts of information was in conflict?

Amy Caruso Brown, MD: Everything, really, everything from information about the diagnosis itself or diagnostic testing, through prognosis, treatment, supportive care, use of complementary and alternative medicine. All of these came up in different examples.

One of the really common ones that stood out to me related to restrictions or guidance around everyday life while going through cancer therapy. So, several different parents described that they came to understand how much of medicine is not evidence-based, but maybe tradition-based or cultural, when parents talked about things like, did your oncologist say it was OK to go swimming or OK to go swimming in a lake or a natural body of water where there might be some bacteria, specifically.

And then parents said that they had left the hospital feeling really clear on like, these are the things I can't do during treatment; these are the things we can do. And then when they talk to other parents, they saw actually, "Oh, there's this huge range of advice being given at different centers, and depending on where your child is treated, you may get very different guidance about what's OK or what's not OK."

Host Amber Smith: Did you find that parents in general put more stock in the doctor or in the social media?

Amy Caruso Brown, MD: It varied. The vast majority of parents described sort of an approach to verifying the information, with some common overlapping elements that many different parents brought up in the study. So, many parents would first take that information back to their oncologist and say, "You know, I read this online, and it's different than what I was told at the hospital, and so I'm wondering what you think? And they described doing something similar with other parents that they knew personally whose children were going through cancer therapy, with friends, with family members, and sort of trying to reconcile the conflict there.

And then they also just describe some characteristics of what they considered to be trustworthy online information or information they'd be more willing to act on. and that was the information firsthand, so was the person sharing it, describing something that happened to a friend of a friend of a friend? Or were they saying, "This is what I was told. This is what my child experienced during therapy"?

And then second, they looked for how detailed it was. So they weren't as trusting of vague information; how up to date it was, so they didn't necessarily trust something that had happened to someone 20 years before. They recognized that things are changing.

And then they looked for convergence. So if they saw the same piece of information in several different places shared by several different people, they were more likely to find it trustworthy. And they used all of those, ultimately, to come to a decision about which piece of information to trust and how to go forward if they were trying to make a decision, for instance.

Host Amber Smith: Did you come across anything that was found on social media that was potentially or could be harmful to someone if they acted on it?

Amy Caruso Brown, MD: So, definitely yes. People described being told things that they ultimately decided were untrue, were factually untrue.

For instance, suggesting that a particular treatment wouldn't work and was too dangerous and that they shouldn't do it. And then doing further research and ultimately deciding, no, actually that's the standard of care, that's the best way forward. That's how we're going to get our child to a cure and to a long life after this diagnosis.

So I think about those pieces of information. If social media increases mistrust in medicine and encourages more parents to, say, reject evidence-based medicine or reject what we know does work for children with curable cancers, then that would very much be a harm. I didn't actually find that any of the parents in this study described actually making the choice to, say, reject conventional treatment because of what they read.

What I did find is that a lot of parents described experiencing some psychological or emotional harm from what they read. They second-guessed themselves. They second-guessed their doctors. They spent a lot of time and energy checking that information, feeling pressure to do more research or get second opinions. One parent called it going down the rabbit hole and described a many-month journey that ended when her partner said, "You've got to stop. Youcan't read online anymore. You need to take a break from that." And I think those are real harms, too.

Host Amber Smith: So the online thing certainly makes information available much more readily.

But if you were to remove that technology, do you think that 50 years ago there was a similar clash between what doctors were telling patients and then what patients were learning, or patients' parents, in the town square or across the backyard fence with their neighbor?

Amy Caruso Brown, MD: Yes and no. I mean, I think, overall in medicine as information has become more widely available, patients are much more educated now. They're more empowered to seek out information and educate themselves. They're more willing to challenge their doctors. That model of shared decision making, that we all sort of think is the best way to go.

It's just much more common that we're making decisions jointly with our patients now, not just telling them what to do, but I think in particular in the setting of pediatric oncology, childhood cancer is a rare disease. And as with other rare diseases, 50 years ago, most families might never have encountered someone else with the same diagnosis, so they wouldn't have had a chance to get access to other information. Their gateway was going to be their physician.

And the last interesting piece of that question is just how much more information there is in general. Fifty years ago, there was less information on the doctor's side, too. We understood less about these diseases. There were fewer studies. And now, our patients not only have access to information on social media, they have access to the same information we have on sites like Google Scholar, where they can type in search terms just the way a clinician or researcher would, and see some of the same articles that we are using to help inform our decision making.

Host Amber Smith: Have you, as a pediatric oncologist, faced situations where parents brought something to you that they found on social media and asked you about it?

Amy Caruso Brown, MD: Yeah, I definitely have, and I think anyone who even remotely keeps the door open for parents to bring that information does. I think probably the most common one relates to complimentary and alternative medicine, that parents hear about things like high-dose vitamin C, about medical marijuana, online, and they come back and ask us about that.

Sometimes they'll hear from other people about large centers. Some centers advertise quite a bit, or they'll just hear from a friend of a friend, "Oh, my child was treated here." So they'll be coming back to ask it. It's not exactly a conflict, but they'll be coming to back to ask for not even a second opinion sometimes, but a third or fourth opinion that probably isn't necessary and can be a pretty big burden on the family.

Just because someone online is saying, "This hospital was great; you need to go there, too," you need to check what they're saying. And I think balancing that ... sort of, this information is empowering, but it can also be burdensome. That's what I'm always trying to do.

Host Amber Smith: Upstate's "HealthLink on Air" has to take a short break, but please stay tuned for more from Dr. Amy Caruso Brown about parents' use of social media during a child's cancer treatment.

Welcome back to Upstate's "HealthLink on Air." This is your host, Amber Smith. I'm talking with pediatrician Amy Caruso Brown, who is also an associate professor of bioethics and humanities at Upstate.

Our topic is how parents navigate advice from their child's oncologist with the advice they find on social media.

What do you say about social media to the parents of newly diagnosed children?

Is there any advice you give them before they go home and start typing into the computer?

Amy Caruso Brown, MD: I try to anticipate, so one of the things I like to do in all new diagnosis talks or when I'm getting to know a new family, is understand something about how they like to receive information and make decisions.

Some people like a lot of information. Some people like a little information and a lot of direction. Some people like to read. When we did this study, TikTok was not even a thing, where now TikTok is a huge source of information, and some people really like that. They like the visual. So, trying to figure out how does this family want to be educated, supported in their journey, make their decisions, because then I can sort of anticipate what they might run into, the biggest thing, I think, is that being cautious and being aware that it is a rabbit hole, and you can fall down it.

And that your friends and family have good intentions, but they can sometimes create additional stress. Sometimes it helps families to know what you can ask people to "not" (do): You cannot Google, and you can ask people to not Google. You can ask your friends and family, "Please don't tell me all about everything you're finding online right now."

So, I tell them to go slow, with what they look at. Depending on what the disease is, sometimes I know what will, and this came up in our study, actually, as a recommendation from parents saying doctors should know what's out there. So, depending on what we think it might be, I know what will happen if they Google. Some of the more tailored social media sites, even Google, is tailored to what we look for, but Facebook, it's hard for me to anticipate what might come up because it'll be skewed by their networks.

But I know what they're going to look at. For instance, if we're thinking it's leukemia, but we don't know which type, the two types have very different prognoses that you would find in a search engine and very different treatments. And so sometimes I can tell the family, we don't know which one it is. If you type it in, you're going to find vastly different information depending on which one you look at. So what I would suggest is don't look it up right now. You can look it up tomorrow after I tell you exactly what it is so that you're getting tailored information.

And then I also usually make some recommendations of specific sites to check out that have good information, evidence-based information, information written in sort of more of a layperson's way. And finally, I tell families that I'm happy to look at anything they find with them, that if something's out there and they want to talk about it, and this really came up from the recommendations from parents in our studies, is I want them to be open with me.

And I, in turn, will be honest with them about what we know and what we don't know. Because sometimes they find information that is really, "outside the scope of Western medicine," is how I would describe it. I can't tell them whether it works or not. I can tell them, and I can work with my pharmacist, to tell them whether it's safe or whether it's known to interact with chemo (chemotherapy). But I can't necessarily say that that Ayurvedic medicine (traditional medicine of India) that they found from this connection with this person and this other family, that's not my practice. That's not my expertise. I can't say whether it works or whether it doesn't work.

The other piece of advice that I give, not usually right at the time of new diagnosis, because it's overwhelming, but a little bit later, is about thinking about how much of the family's journey they want to share online, how they're going to share it, and then in the context of that decision, thinking about their child's privacy. We don't have a lot of data on this yet, but I think someday we will be able to study the experiences of children who are now adults whose parents blogged or posted extensively online about them. And there has been some real ethical criticism and some pushback, saying children have a right to privacy. And as much as this is a family journey, and I think parents need as much support as they can get, it needs to come with that caveat of not putting anything out there that your child might not want out there later, or that might come back to haunt them someday when they're adults.

Host Amber Smith: Do you think there's value though, in parents of kids with cancer communicating with one another, comparing notes?

Amy Caruso Brown, MD: Absolutely. Yeah. 150%. I think one of my favorite quotes from this study was, the parents said the amount of love and support that she encountered online from other families was just unmatched, the way people could be there for each other because of what they were going through. And the same parent noted that people are in different places in their journeys, and so they have experience to share. They also may have a really different journey than the parent who is going online looking for support, and she thought that was a good thing to remember. And also there's a lot of practical everyday challenges that people encounter that we have some advice on. It's not that we don't think about these sort of practical things. Like, I can tell you how to take a shower with a port (an implanted medical device), how to easily cover up your central line (an IV line inserted into a vein) at home. but sometimes there's safe feeding challenges or behavioral challenges. Children who are taking steroids for leukemia can get really irritable. Toddlers can have major temper tantrums and sometimes other families will have advice that just would not have occurred to me of, "Hey, this worked with our 3-year-old, you might want to try it with yours."

And I think all of that is just invaluable and helps families feel less alone, less isolated and ultimately more empowered to take care of their children.

Host Amber Smith: Your paper says that parents offered a bunch of recommendations for how pediatricians might approach discussing parental social media use. You already mentioned that someone suggested physicians need to know what's out there.

Amy Caruso Brown, MD: Uh-huh.

Host Amber Smith: Are there some other things that you found were good ideas?

Amy Caruso Brown, MD: Yeah, I mentioned that being open, so parents described ways in which their providers, their physicians, reacted when they brought information online, and some of those ways really promoted trust between the families and the physicians. And part of that was that openness, of being open to families bringing questions from social media.

And then on the converse side, some families described feeling very judged, or the physician just saying, "Well, you shouldn't go online," and having the conversation shut down. So that openness and the honesty about what we know and don't know was a big one. Educating ourselves, going online, we mentioned.

I really liked that we ended up with eight recommendations altogether. No. 6 was "Know that it's OK if we sometimes prefer to look up what you said, rather than asking you to explain it immediately. This can help us exercise some control in a situation where we often feel powerless." And I think that's a really important point, that it's not necessarily reflective of mistrust when a family wants to do some research on their own or wants to go online.

They also mentioned treating every family as unique, that they want to feel like when they talk to us as physicians, we take some of the burden away of feeling like what they find when they go online, which is that maybe they're actually lucky in the world of pediatric oncology, that they don't have the worst-prognosis diagnosis out there. And so they asked for physicians to take some of that burden away.

And then, finally, they recommended hospitals having more formal guides and education processes and maybe even some classes, on social media literacy or media literacy and how to go online. And I think that actually, I feel like, in talking to my son, who's 11, that's becoming more prevalent in schools now, too, of teaching kids how do you navigate all the information and misinformation that's out there? So I'm thinking maybe in another generation, or in 10 or 20 years, we won't necessarily see that families feel the need for that as much.

Host Amber Smith: Are there other ways? I mean, what do you recommend besides social media, if a family really wants to learn about the condition and the options available? Are there places online that you can point them that are not social media, but will have good information?

Amy Caruso Brown, MD: Yeah, there's some.

Some of the children's hospitals, and even some general hospitals or medical schools, have pretty good websites that have good information.

Sometimes it's very generic, in a way that can be misleading. There's not really any one that I think is fantastic for all diseases, but I keep in mind ones that I've seen that are good for specific diseases. Some of our professional societies make handouts -- we have paper copies, but they're also available online -- for instance, that go through how different drugs for cancer treatment work and what their side effects are, how they're administered, which is important to know.

And then lots of hospitals have a nurse navigator or a nurse educator role. So in addition to the part of all of our jobs that is doing education with families, many hospitals have someone whose job is specifically to do some of that education and to make sure that families feel like they have all the information that they need.

Host Amber Smith: Dr. Caruso Brown, thank you so much for taking the time to tell us about your research.

Amy Caruso Brown, MD: You're welcome. It was a pleasure talking with you.

Host Amber Smith: My guest has been Dr. Amy Caruso Brown. She's an associate professor of bioethics and humanities at Upstate, and she's a pediatrician who specializes in hematology/oncology.

I'm Amber Smith for Upstate's "HealthLink on Air."

Here's some expert advice from sleep medicine specialist Dr. Ryan Butzko from Upstate Medical University. Is it dangerous to have sleep apnea go untreated?

Ryan Butzko, DO: It's a good question and something I get asked all the time. Sleep apnea can be dangerous, in the same way that you may have heard that high blood pressure is dangerous or diabetes is dangerous over a long period of time.

Sleep apnea can lead to the development of many, many other diseases, and the list is so long and involves so many other organ systems that I can't list them here, but the most dangerous ones are high blood pressure, coronary artery disease or heart disease, heart failure, stroke, and arrhythmias, which are abnormal heart rhythms. Those are the most dangerous complications of sleep apnea. They do take time to develop, but they are highly, highly associated with sleep apnea.

If you are untreated and if your doctor has told you you're in the moderate-to-severe range, that is the range of sleep apnea that puts you most at risk for developing these complications. And you should be treated, whether it be with CPAP, whether it be with an oral appliance, whether it be with Inspire, or even really, really trying to lose weight. Any of those things can help if you're in the mild range, your risk of developing these things is more or less the same as the general population that doesn't have sleep apnea. So it's not imperative that you need to aggressively treat it. People with mild sleep apnea, I generally only push for more aggressive treatment if they are very symptomatic with regards to their sleepiness or poor functioning during the day, or poor quality of sleep at night.

Host Amber Smith: You've been listening to sleep medicine specialist Dr. Ryan Butzko from Upstate Medical University.

And now, Deirdre Neilen, editor of Upstate Medical University's literary and visual arts journal, The Healing Muse, with this week's selection.

Deirdre Neilen, PhD: Erin McDonough is a poet from Los Angeles who sent us a poem that describes the tightrope a mother of a very ill child must walk when deciding what to say to that child about the illness, about the treatments. Here is:

"The Mother of the Pediatric Patient"

I cannot lie to you

And I cannot tell you the truth

I cannot say

This is life or death

Or

For sure, you will be cured

I cannot tell you the risks

How everything is a gamble

How no one will promise me the happy ending

Because

because

because

We are gambling with your life

Taking risks with your body

Stretching every neuron to think your cure into being

We don't know how this will end

We can only imagine an ending we want

Whether or not this is truth or lie

All we can tell ourselves is ...

Well that is what being a grown-up is all about

The story we tell ourselves. ...

But to you

We soothe

We give bite-sized amounts

We pray you don't ask or grasp

for more

than your eight-year-old soul can hold

Everything is the truth, you suffer (with treatment or without)

Everything is a lie, you will feel better (briefly or eventually)

And of course, there is reality

The combination of both.

Host Amber Smith:

This has been Upstate's "HealthLink on Air," brought to you each week by Upstate Medical University in Syracuse, New York.

Next week on "HealthLink on Air," some patients recover at home while technically they're still hospitalized.

if you missed any of today's show, or for more information on a variety of health, science and medical topics, visit our website at healthlinkonair.org.

Upstate's "HealthLink on Air" is produced by Jim Howe with sound engineering by Bill Broeckel.

This is your host, Amber Smith, thanking you for listening.