Real Talk: Eosinophilic Diseases By cover art

Real Talk: Eosinophilic Diseases

By: American Partnership for Eosinophilic Disorders
Listen for free

  • Summary

  • Eosinophils are a type of white blood cell that play a role in immune responses and help fight off infections. When these cells build up and cause inflammation in the digestive system, tissues, organs, and/or bloodstream, without a known cause, it may be the result of an eosinophil-associated disease. Join the American Partnership for Eosinophilic Disorders (APFED) for a series of conversations with researchers, clinicians, patients, and other community members as we discuss practical strategies for disease management and treatments, research, and other topics of interest.
    © American Partnership for Eosinophilic Disorders (APFED)
    Show more Show less
activate_primeday_promo_in_buybox_DT
Episodes
  • Artificial Intelligence and Patient Education

    Artificial Intelligence and Patient Education
    Jun 26 2024
    Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE who serves on APFED’s Health Sciences Advisory Council, have a conversation about artificial intelligence (AI) and patient education, with guest Dr. Corey Ketchem, a third-year Gastroenterology Fellow at the University of Pennsylvania. In this episode, Ryan, Holly, and Dr. Ketchem discuss Dr. Ketchem’s interests, and his research into using an AI chatbot to provide patient education on eosinophilic gastrointestinal diseases. He shares, in broad terms, the methodology and conclusion of the research and what current and future research he is pursuing about using artificial intelligence to improve patient education and care. Listen to this episode to learn about the current limitations and potential future benefits of using AI to help patients. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [1:17] Ryan Piansky and co-host Holly Knotowicz introduce the topic, artificial intelligence and patient education, and their guest, Dr. Corey Ketchem, a third-year Gastroenterology Fellow at the University of Pennsylvania. [1:30] Dr. Corey Ketchem has an interest in allergic inflammation of the gastrointestinal tract, particularly eosinophilic gastrointestinal diseases (EGIDs), as well as artificial intelligence and epidemiologic studies. [2:01] Dr. Ketchem did his residency at the University of Pennsylvania following medical school. There he met Dr. Evan Dellon, a world expert in EoE. Dr. Dellon became a mentor to Dr. Ketchem. [2:24] As Dr. Ketchem learned more about EoE, he was fascinated by the many unknowns and opportunities for discovery within the eosinophilic GI field. He wanted to make an impact on patient care. [2:51] Under Dr. Dellon’s mentorship, he did epidemiologic studies. Seeking specialized training, he ended up at the University of Pennsylvania where he is getting rigorous training in epidemiology to study EGIDs. [3:18] As ChatGPT was gaining its buzz, Dr. Ketchem saw a lot of clinical applicability. He views AI as an asset in epidemiology and hopes to use it to accelerate his research. [4:30] AI usually references using computers to mimic human abilities, estimate decisions, or predict outcomes. An example is Natural Language Processing (NLP), to analyze and understand human language. Large Language Models (LLM) use NLP. [5:08] ChatGPT is based on a LLM. LLMs use NLP techniques to understand vast amounts of text that they are trained on and generate responses in a chat format. [5:25] Machine learning is another subset of AI that uses statistical techniques to give computers the ability to learn with the data and predict outcomes. [5:50] The hope is to use these AI techniques to speed up discovery and also minimize human expense or labor. [6:28] Dr. Ketchem co-authored a paper in Clinical Gastroenterology and Hepatology about an AI chatbot and EoE. He had been inspired by a cardiology paper on whether ChatGPT would create accurate, appropriate answers about cardiology disease health. [7:19] Dr. Ketchem wondered if ChatGPT could be applied to EoE education. He discussed it with Dr. Dellon and Dr. Krystle Lynch, Dr. Ketchem’s mentor at the University of Pennsylvania, and with Dr. Joy Chang, at the University of Michigan. They came up with a study design. [8:06] The study asked ChatGPT questions about EoE, focusing on patient education and the therapeutics, and seeing if it gave accurate responses or not. [8:45] The four doctors developed 40 questions that they gave ChatGPT as prompts and evaluated the responses. They proposed the questions in two ways: each question in an individual chat and 40 questions in a single chat. [9:41] Analyzing the responses, the study demonstrated that ChatGPT responded with multiple inaccuracies to questions about EoE on general topics, complications, and management. Over half of the responses mixed correct and incorrect information. [10:09] To evaluate the readability of the responses, the doctors used the Flesch-Kincaid reading ease tool. To understand the output from ChatGPT one would need high school and two years of college. That poses a potential health literacy barrier. [11:40] The questions ranged from general: “What is eosinophilic esophagitis?”, to complications: “What is a food impaction?”, “What is a stricture?”, to therapeutics: “What are steroids for eosinophilic esophagitis?”, “Can I use a proton pump ...
    Show more Show less
    36 mins
  • Food-induced Immediate Response and Eosinophilic Esophagitis

    Food-induced Immediate Response and Eosinophilic Esophagitis
    May 30 2024
    Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, have a conversation about food-induced immediate response in eosinophilic esophagitis (EoE), with guest Dr. Nirmala Gonsalves, Professor of Medicine in the Division of Gastroenterology and Hepatology at Northwestern University, Feinberg School of Medicine, and Co-Director of the Northwestern Eosinophilic Gastrointestinal Disorders Program. In this episode, Ryan, Holly, and Dr. Nirmala Gonsalves discuss food-induced immediate response in EoE, recent and ongoing research into FIRE, and advice for providers. Listen to this episode to learn about food-induced immediate response (FIRE). Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:50] Ryan Piansky and co-host Holly Knotowicz introduce the topic of today’s episode, food-induced immediate response in eosinophilic esophagitis, and their guest, Dr. Nirmala Gonsalves, Professor of Medicine in the Division of Gastroenterology and Hepatology at Northwestern University, Feinberg School of Medicine. [1:38] Dr. Gonsalves is the Co-Director of the Northwestern Eosinophilic Gastrointestinal Disorders Program. Her research and clinical career are dedicated to improving the care of patients with eosinophilic gastrointestinal diseases, or EGIDs. [1:53] Dr. Gonsalves’s extensive clinical experiences with EGIDs have shaped her research goals, which include identifying novel treatments and determining the best methods to measure disease activity. [2:20] Dr. Nirmala Gonsalves has been at Northwestern for 25 years and has been involved in the EGID and EoE space for the last 20 years. Dr. Gonsalves met Ryan during her first introduction to APFED when Ryan was “much, much younger,” so she is pleased to see him co-hosting this podcast. [2:56] Within Northwestern Medicine, Dr. Gonsalves is part of the Esophageal Group. Within the Esophageal Group, she co-directs the Eosinophilic GI Disorders Program with Dr. Ikuo Hirano. Working in the EGID space for the last 20 years has been incredibly rewarding. [3:11] Dr. Gonsalves feels lucky to be a part of The International Gastrointestinal Eosinophil Researchers (TIGERS) and the Consortium of Eosinophilic and Gastrointestinal Disease Researchers (CEGIR). [3:26] Dr. Gonsalves has focused her clinical career on understanding eosinophilic GI disorders, helping to get better diagnoses, increased awareness, and better treatments, and improving the quality of life for patients with these conditions. [4:19] Dr. Gonsalves describes the study of food-induced immediate response in eosinophilic esophagitis (FIRE). In 2017, gastroenterologist Dr. Alex Straumann, and allergist Dr. Mark Holbreich, both very familiar with EGID, started a multi-center effort and project, working with many physicians and patients to define this condition of FIRE. [4:45] The symptoms of FIRE are very different from what we typically think about as EoE symptoms. The classic symptoms of EoE in adults are dysphagia (difficulty swallowing), or food impaction (a bolus of food stuck in the esophagus). [5:37] This team of researchers in Switzerland, Northwestern, Indiana, North Carolina, Colorado, and Mt. Sinai, to name a few centers, noticed patients describing different symptoms; a more immediate response that was happening in their esophagus when they were exposed to certain specific foods, like beer or wine and avocado or banana. [6:19] Patients described an immediate reaction in their esophagus, occurring any time from seconds to minutes after ingesting that food, as a painful, squeezing sensation, and a narrowing in their esophagus that was temporally related to these foods. [6:42] It started to increase the researchers' awareness that this symptom was different from the classic dysphagia that adults and older children typically present with. [7:12] In the study, they did a two-phased investigation. First, they sent a survey to physicians used to treating EoE, to understand what their experience was about these symptoms. Based on that knowledge, they convened twice to develop a questionnaire for patients, to understand how common this is in the patient population. [7:38] The response was 47 physicians (an 82% response rate). They sent the patient survey to the EoE Swiss cohort and the response was 239 patients (a 65% response rate.) [7:58] Of the physicians, 90% reported patients ...
    Show more Show less
    37 mins
  • The Spoon Theory and Eosinophilic Disorders

    The Spoon Theory and Eosinophilic Disorders
    Apr 30 2024
    Co-host Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and co-host Holly Knotowicz, a speech-language pathologist living with EoE, who serves on APFED’s Health Sciences Advisory Council, have a conversation about the Spoon Theory. In this episode, Ryan and Holly discuss the origin of the Spoon Theory, their experiences, and what the Spoon Theory means in their lives. Listen to this episode to learn how the Spoon Theory could work for you. Disclaimer: The information provided in this podcast is designed to support, not replace the relationship that exists between listeners and their healthcare providers. Opinions, information, and recommendations shared in this podcast are not a substitute for medical advice. Decisions related to medical care should be made with your healthcare provider. Opinions and views of guests and co-hosts are their own. Key Takeaways: [:50] Ryan Piansky and co-host Holly Knotowicz introduce the topic of today’s episode, the Spoon Theory. Both Ryan and Holly will discuss their experiences. [1:39] About ten years ago, fatigue became a challenge for Holly. As she researched options for managing her fatigue, Holly came across the Spoon Theory, a tool she uses and teaches now in conferences and talks. [2:05] The Spoon Theory is a story written and copyrighted by Christine Miserandino in 2003 to help explain how chronic illness affects the amount of physical and or mental energy a person has available for daily activities and tasks and how it can be limited. [2:28] About a year ago, in a Community Conversations episode of APFED’s podcast, guest Ashley Spencer discussed EGPA. Ashley and Holly brought up the Spoon Theory. Ryan calls the Spoon Theory a digestible way to convey the effect of living with fatigue from chronic illness. [2:46] Holly shared how Christine Miserandino developed the Spoon Theory while at brunch with a friend. Her friend asked Christine how she was coping living with lupus. Christine grabbed all the spoons from the table and explained that each task throughout the day costs a spoon. [3:21] Christine asked her friend to walk through every activity of her morning. As her friend started talking about the different things she does, Christine would remove a spoon from her pile of 12 spoons. When dinnertime came, there was only one spoon. That limited her choices for dinner; this was long before dinner delivery services. [4:19] Through this exercise, Christine’s friend learned how chronic illnesses use up a lot of energy just from existing. For listeners who want to read more, please check out Christines’ website, ButYouDontLookSick.com, linked in the show notes. [4:33] Ryan sees the Spoon Theory as an easy way to convey what living with a chronic illness is like. He asks, why is it 12 spoons? Does everyone have the same number of spoons? In interviews, Christine has said 12 was the number of spoons on the table but it is a good representation of the limited supply people with chronic illnesses have. [5:07] According to the theory, healthy people have an “unlimited” supply of spoons, while people with chronic illnesses have to ration their spoons to get through the day. Everybody’s number is slightly different but the theory uses 12. [5:22] Ryan shared a story about seeing his sister during the holidays. She doesn’t have a chronic illness. She seems to have unlimited spoons for activities she plans, while Ryan may run out of spoons around 10:00 a.m. [5:46] Ryan asks if it is always the same number of spoons per day. Holly says your baseline number is about 12 spoons. It can vary if you borrowed spoons from the day before or if you have spoons left over from the day before. Some say on a good day, you might wake up with 20 spoons but a bad day would start with 12 spoons. [6:34] Holly explains about borrowing spoons. If you run out of spoons on one day, before you finish your activities, you might borrow spoons from the next day by canceling a planned activity for the next day. Holly also explains it to people as a lending library. [7:49] When Ryan was young, he attended the APFED patient education conference every year. He recommends it. His parents warned him not to overextend himself but to take it easy and rest during the day. At every conference, he just kept going for 12-plus hours. When he got home, he would crash for a day. He had used up all his spoons! [8:36] Ryan asks what happens when you run out of spoons. Holly shares that when you run out of spoons, your body might have a flare-up, or be more susceptible to getting sick because you’ve become rundown. [9:10] It can also lead to comparison with others and feeling sad or anxious because you don’t have the energy that healthy people around you have. For the average person with chronic illness, cooking from scratch from a recipe could be three or four spoons. [9:51] For...
    Show more Show less
    44 mins
Physical Illness & Disease Hygiene & Healthy Living
Show more Show less

What listeners say about Real Talk: Eosinophilic Diseases

Average customer ratings

Reviews - Please select the tabs below to change the source of reviews.

Audible.com reviews

Amazon reviews
No Reviews are Available