Episode 48: AACE Journey For Patients With Thyroid Disease

Thyroid disease affects approximately 20 million Americans, leading many patients to turn to the internet for answers. However, amidst the vast array of information available online, distinguishing accurate information can be challenging. Recognizing this necessity, the endocrine experts at AACE have developed "The Journey For Patients With Thyroid Disease," an innovative resource devoted to educating and empowering individuals with thyroid disease to navigate their condition, treatment plan, and wellness goals. In this podcast, endocrine experts Alex Tessnow, MD, ECNU, FACE, Cheryl Rosenfeld, DO, FACE, FACP, FSVM, ECNU, and Kenneth Izuora, MD, MBA, FACE, delve into the development, significance, and accessibility of this patient resource. Key topics discussed include the meticulous crafting of the journey into a meta-map using the latest AACE guidelines, the importance of providing patients with resources beyond the clinical setting, and how this resource serves as an invaluable tool for both patients and clinicians, providing timely updates on the latest clinical advancements for thyroid care. Support for this podcast was provided in part by AbbVie. Visit the Journey For Patients With Thyroid Disease here.

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April 29, 2024

Speaker 1: Welcome to AACE Podcasts. Thanks for tuning in as we elevate clinical endocrinology by taking deep dives into trends and topics that can help us improve our patient care and global health. Find the latest episodes on aace.com/podcast. And now let's meet the endocrine experts who will be talking with us today.

Dr. Tessnow: Hi, and welcome to another AACE podcast. I'm Dr. Alex Tessnow. I'm an associate professor at the University of Texas Southwestern Medical School in Dallas and I specialize in my practice and in my research in thyroid disorders, and joining me today are Dr. Cheryl Rosenfeld and Dr. Kenneth Izuora, and we'll discuss the development of the thyroid patient journey. Thank you both for joining us today. Dr. Rosenfeld, can you tell us a little bit about yourself and what you do?

Dr. Rosenfeld: So I'm Dr. Cheryl Rosenfeld. I'm an endocrinologist in private practice in New Jersey who also has a focus on thyroid disease but do treat general endocrine conditions. I'm also an adjunct associate professor of medicine at the Touro College of Osteopathic Medicine in New York and I'm currently an AACE board member and a liaison to the patient journey program.

Dr. Tessnow: Excellent. Thank you, Dr. Rosenfeld. And now I will pass it off to Dr. Izuora to introduce himself.

Dr. Izuora: Thank you, Alex. I'm Ken Izuora. I'm a professor of medicine at Kirk Kerkorian School of Medicine at UNLV. I'm also the chief of endocrinology division at our institution. I'm also the fellowship program director. I happen to also be a board member of the AACE board of directors, and I look forward to the... our discussion today.

Dr. Tessnow: Excellent. Thank you. So before we begin, I just want to make a big thank you to our sponsor, AbbVie, who supported this engagement and this podcast and the thyroid journey all along, so appreciate AbbVie for being our sponsor. And I wanna give you a little bit of background. In 2022, AACE launched kind of an innovative initiative to develop a novel platform. It was aimed at educating and engaging patients with endocrine conditions. AACE's Patient Journeys translates the complex science of endocrine diseases into an easy to understand, accessible roadmap and this can guide patients with up-to-date information, resources, and tools to help them navigate their endocrine conditions, their treatment plans, as well as wellness goals. The initiative's not just about imparting knowledge, it's about doing so in a way that resonates with patients on a personal level. The information provided is from clinical guidelines developed by AACE, reviewed by experts and ensures accurate and reliable information and is presented in a patient-centric manner.

Dr. Rosenfeld: So Alex, yeah, if I can interrupt I think what's really interesting about the websites is they're derived initially from a MetaMap, which is a graphic map, and they are available of each of the webpages and this can also be downloaded from a QR code, and the, the graphics make the sites very easy to follow. They're, they're different colors, there're icons that make sense, and the information is very easy to follow.

Dr. Tessnow: Yeah. So the journeys are designed to equip patients and their caregivers with the knowledge and guidance needed to navigate this path of living with and managing endocrine disorders. To date, AACE has launched patient journeys for thyroid, obesity, and diabetes technology. The initial project, uh, being the journey for patients with thyroid diseases, we're discussing today, and this was a collaborative effort with Dr. Rosenfeld, Dr. Ben Gigliotti, and myself. Dr. Izuora joined our patient journey recently and has had input into the patient journey design and implementation since that time.

Dr. Rosenfeld: So I- I wanna get into a little bit more depth about the maps. The... You know, each journey follows a path through all the stages that the patient would encounter from the time that they're aware of their symptoms to any screening test they might encounter, their signs, their symptoms, and then it talks a bit about their diagnosis as well as planning for future follow-up and treatment, also as far as monitoring, adherence to medication or to treatment, care and continuity. So the journey map, again you can find these at the bottom of the website, but the patient can start at the beginning so if they're just experiencing symptoms or they can start anywhere in the journey. So let's say they've been diagnosed, they're already on treatment, and they wanna know what to do in that situation, how to follow up with the treatment, they can just drop into the journey at that point. The maps are created using the latest AACE guidelines, so the AACE Journey for Patients with Thyroid Disease is derived from the 2016 Thyroid Nodule Guidelines, so the AACE Medical Guidelines for Clinical Practice for the Diagnosis and Management of Thyroid Nodules, as well as the 2012 AACE Comprehensive Clinical Practice Guidelines for Hyperthyroidism in Adults. Ken, I just want you to comment a minute about how AACE constructs its guidelines so that those guidelines inform us in making our patient journeys.

Dr. Izuora: Yes. Thank you, Cheryl. I think it's really important to highlight the process for developing our guidelines. You know, having been involved in one of our recent guidelines, I was able to see firsthand how rigorous the process actually is. You know, starting with identifying content, there are experts who make up the guidelines taskforce, then systematically collecting thousands of relevant journal articles, you know, for example, for the diabetes guidelines we had over 11,000 articles, and then the taskforce members now work in groups to review these journal articles to identify and select those with the highest quality of evidence. Now, these are then summarized to generate the guidelines that make up the, the recommendations for the guidelines along with this gotten evidence. Now, after the recommendations have been put down, the guidelines do undergo several levels of review by all members of the taskforce and also by the CPGD, Clinical Practice Guideline Oversight Committee, and ultimately they're assessed in a peer review by independent experts before it's actually published. So as you can see, the process is quite rigorous and these recommendations on which the patient journeys are based of the highest quality. This can make healthcare professionals to feel comfortable and confident that the information and the patient journeys are equally of the highest quality as the guidelines that they're based upon, and these guidelines obviously have been transformed with the patient journey into a way that is easily understandable for our patients.

Dr. Tessnow: So why do you think it's important that patients have a resource that they can access at home and on the ground, like, outside of the clinical setting? Cheryl, what do you think about that?

Dr. Rosenfeld: So thyroid disease is really difficult to understand, you know, the lab testing to go in the opposite direction of what we're explaining to the patient, so there's a lot of confusion after they leave your office. You know, and the other thing I think is doctors, we're not always really good at explaining things in plain language. We occasionally use jargon, and I think that the patient journeys are... They follow a very organized pathway, they are written in plain language, so patients can understand what's going on, even those who may be new to their diagnosis.

Dr. Tessnow: I also find that, you know, patients... I don't always have time to answer all the, the questions that patients have, and sometimes they get home and there's family members saying, "Well, what did he say about this?" And so I find there's a lot of questions here on the patient journey pathway here that's available on the website that can answer some of those questions for those patients that, that come up later as well.

Dr. Izuora: A typical office visit might last about 15 minutes, but sometimes, even sometimes it's less and things often move very quickly during those appointments so that patients, when they get home they might have questions, like, pointed out that are not addressed during the visit. Also, they might talk to concerned family members who may have additional questions that they couldn't discuss during the visit, so I think having the patient journeys as a resource that they can reference at home will definitely be a, good way to give them good information that is reliable that they can use to answer some of those questions.

Dr. Tessnow: Have you guys had any feedback from patients that have used it? What have they been telling you?

Dr. Rosenfeld: So my patients have thanked me for suggesting that they review the site. Many of their questions have been answered. They go to the frequently asked questions site, they look at some of the statistics, so they have a lot of their recent questions answered, some new ones have been raised, and we even have a site on the patient journey website that says, "Questions to ask your doctor." And more recently, the updates to the site include a navigation video, so the patients view the video and they can figure out how to go through the patient journey, there's a quiz to see how they're doing, how much they understand, and a way for patients to actually give us some feedback on whether they like the site.

Dr. Tessnow: So how do we know that this is a living document, that this is gonna change with the times, that as new information comes out regarding our specialty that patients can have the most up-to-date information?

Dr. Rosenfeld: So the website's gonna be updated every time new information's released. It's gonna reflect best practices, so if a new guideline comes out we're gonna make sure that we incorporate that information in the appropriate section of the patient journey, and we're always looking at it and if there are errors that are brought to our attention, we fix them right away.

Dr. Tessnow: I think one of the most important things about this is that we as physicians and providers know how to tell our patients to get to this website. How do they find this information? What sort of tricks do you have to tell other providers how to utilize this in their practice?

Dr. Izuora: Well, I think, like Cheryl mentioned previously, there's a barcode at the bottom of the website and that barcode will take you directly to the patient journeys, but also just going to aace.com/thyroidjourney if it's easier to put this. What I normally will do is to put the website on the after visit summary, for example, so that when the patient get home or the barcode, then they can go directly to the website. Another thing I found useful also, it's if you, if you also go to a search engine and just enter patient... thyroid patient journey, it takes you directly to the patient journey website.

Dr. Rosenfeld: I actually keep the website open in the background, you know, so I have my EMR and I'm typing away and the patient says, "Where can I get some more questions answered?" So I quickly flip to the website, scroll down to the MetaMap where the QR code lives, and have them take their smartphone out and go right there based upon that QR code. It takes you right to the website.

Dr. Tessnow: I would also add that I just look at the aace.com website and there's a quick, easy link there that says for patients and, and takes you straight to the journeys. Doctors Rosenfeld and Izuora, I wanna thank you guys again for joining us today on this podcast. To learn more about the AACE Journey for Patients with Thyroid Disease, please visit the aace.com/thyroidjourney to direct your patients, and I invite all of our providers to direct their patients to this website as we continue to enhance and broaden this patient-faced... patient-focused content and strive to become a very trusted and definitive resource for reliable information on thyroid disease.

Dr. Rosenfeld: Thank you, Alex.

Dr. Izuora: Thank you, Alex and Cheryl.

Speaker 1: Thanks for listening to another great AACE podcast. Join us for another episode at aace.com/podcast and help us in our mission to elevate clinical endocrinology. Together we are AACE.