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Real Talk: Eosinophilic Diseases


Feb 23, 2023

Description:

Co-hosts Ryan Piansky, a graduate student and patient advocate living with eosinophilic esophagitis (EoE) and eosinophilic asthma, and Holly Knotowicz, a speech-language pathologist and feeding specialist living with EoE who serves on APFED’s Health Sciences Advisory Council talk with guest Joel Friedlander, DO, about the development and use of transnasal endoscopy (TNE), also known as unsedated endoscopy.

 

Dr. Joel Friedlander is a co-founder of EvoEndo and a pioneer of pediatric transnasal endoscopy. Previously, he was the Gastroenterology lead of the Aerodigestive Program at Children’s Hospital Colorado and a bioethics consultant.

 

In this episode, Ryan and Holly discuss with Dr. Friedlander the background and history of unsedated endoscopy. Dr. Friedlander talks about the team at Children’s Hospital Colorado who worked with him on the technology and the procedure. Dr. Friedlander first noticed a similar procedure being used by ENT physicians and speech and language pathologists and wanted to use it for pediatric eosinophilic esophagitis patients. He explains the research they did\. Now Dr. Friedlander and some of his colleagues from the multidisciplinary team at Children’s Hospital Colorado have co-founded a company to promote and spread the use of this technology around the country. Listen in for more information about the use of unsedated endoscopy for EoE.

 

Dr. Joel Friedlander would like to extend special thanks to the individuals and groups who contributed to the advancement of the unsedated transnasal endoscopy for eosinophilic esophagitis. This includes Dr. Jeremy Prager, Dr. Robin Deterding, Dr. Emily DeBoer, the GI and AeroDigestive teams at Children’s Hospital Colorado, APFED, the Bunning Family, the Meister Family, CEGIR, CURED, the Cherry Family, the Friedlander Family, and the Smith Family.


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:

[1:07] Ryan welcomes co-host Holly Knotowicz. Holly introduces the topic: a new diagnostic tool for EoE: transnasal endoscopy, also known as TNE. Holly introduces the episode guest, Dr. Joel Friedlander.

 

[1:50] During her time working at Children’s Hospital Colorado, Holly enjoyed collaborating with Dr. Friedlander to support children living with eosinophilic esophagitis.

 

[2:22] At Children’s Hospital Colorado, Dr. Friedlander was part of a multidisciplinary program of ENT physicians, pulmonary physicians, a gastroenterology physician, feeding and speech therapists, occupational therapists, and nutritionists, to work with children who had upper airway disorders, or eosinophilic disorders of the upper GI tract.

 

[2:44] Dr. Friedlander noticed that their ENT colleagues could look in individuals’ throats every day, without anesthesia, using tiny scopes, and speech and language pathologists would use little cameras to look in the back of people’s throats to watch swallowing.

 

[3:00] The multidisciplinary team at Children’s Hospital Colorado wanted the same technology in gastroenterology. They put together some research, which led to a startup company. Dr. Friedlander is the Chief Medical Officer of the company, trying to bring unsedated endoscopic technology to patients around the world.

 

[3:26] Unsedated endoscopy is especially important to patients with eosinophilic disorders that require numerous endoscopies with anesthesia. Doctors don’t want to have their patients go to sleep unless they have to. Although anesthesia is relatively safe, it’s not without potential risks, it drives up the cost of care, and it is inefficient.

 

[3:57] Dr. Friedlander’s research was how to bring the unsedated endoscopic technologies their colleagues had to gastroenterology patients, specifically for eosinophilic disorders. Holly Knotowicz, as a person who has EoE and as a medical provider, loves to hear about creative ways to take care of these patients.

 

[4:47] Holly knows that seeing doctors is scary, but she loved that Dr. Friedlander always had a joke for his pediatric patients. Holly asked Dr. Friedlander for a joke today and he provided a couple of his oldies but goodies.

 

[5:45] One of the most important parts of doing any awake procedure with patients is having a relationship. It is a medical procedure. With this technology, there are different styles. You develop a style as a physician; Dr. Friedlander tells jokes. You also have to know your patient. Every patient is different.

 

[7:35] Dr. Friedlander researched the use of unsedated endoscopic technology to remove sedation risks to pediatric patients, reduce their parents’ fears, make faster and safer diagnoses, optimize the patient’s experience, and lower the cost of care.

 

[8:32] As Dr. Friedlander’s group was developing the technology for TNE, they learned that adult gastroenterologists had tried to introduce it over 20 years ago but it never took up much traction in the U.S. When they started doing it in pediatrics, initially they started using the smallest scopes available, but the little scopes were breaking.

 

[10:01] They went to the hospital asking for another scope to make the technique even better. Originally, an ENT physician would do the procedure through the nose and a gastroenterologist would go into the esophagus, requiring two physicians for a short procedure. So the ENT physician taught the gastroenterologist the nasal procedure.

 

[10:24] The other problem was how to keep a child calm for the four-minute procedure. They tried using video goggles and then moved to VR. After working through about 1,000 procedures in Colorado, they felt they had the right flow for the procedure and patient experience for the children, including Dr. Fiedlander’s jokes.

 

[11:28] Some kids like jokes. Some kids like VR. The team had to choose which kids were the right fit for unsedated TNE. Unsedated TNE works for the vast majority of kids but it’s not for everyone. About five to 10% think it’s easy, about five to 10%  say it’s not for them, and the rest can manage the few minutes it takes, vs. anesthesia.

 

[13:30] A typical endoscope used for sedated upper GI tract endoscopy is nine or 10 mm in diameter. An adult transnasal scope (a baby scope for sleeping babies), or noodle scope, is about 5‒6 mm. A transnasal scope for pediatric TNE is 3‒4 mm, like a piece of spaghetti. The different scopes have different features.

 

[14:54] The ENT physician of the group, Dr. Jeremy Prager, worked with Dr. Friedlander to teach him the TNE technique. Dr. Robin Deterding, Chief of Pulmonology at Children’s Hospital Colorado fostered the development of the technology. Dr. Emily DeBoer also collaborated on the initial project.

 

[15:34] Dr. Friedlander, Dr. Prager, Dr. Deterding, and Dr. DeBoer are the co-founders of the company where Dr. Friedlander currently works. They all came together to figure out the best way to bring this unsedated technology to patients, through new scopes and constantly refining the techniques.

 

[15:49] Dr. DeBoer developed 3D models for training doctors who had never used a 3 mm scope or navigated a child’s nasal passage. It takes time for a doctor to learn the technique and get comfortable with the smaller scopes.

 

[17:26] The typical procedure starts with the patient having a conversation with the doctor who is doing it. The doctor will also talk during the procedure. If VR is used, the doctor orients the patient on how to use it and picks a program. There is the orientation to the scope and the procedure and how the patient may feel during and after it.

 

[19:54] Then there is an orientation to the medication administration, including numbing spray in the nose. Dr. Friedlander asks patients ahead of time to practice nasal spray at home to see how it feels.

 

[21:13] Some kids do well with the procedure and others do not. Dr. Friedlander has patients practice slow, deep breaths to help them relax if they start to feel uncomfortable. He tells patients not to hold their breath or pant like a dog. If they take slow, deep breaths and watch the show, it will be over before they know it.

 

[22:21] After preparation, they go to the procedure room. They check who the patient is and their birthday. They use numbing spray on the nose (or throat), put on the VR goggles, have the parent sit behind if the child needs their handheld, turn on the show, turn down the lights, take the camera scope, lubricate it, and do the procedure.

 

[23:10] The scope goes in the nose and down the back of the throat. Dr. Friedlander may ask the patient to swallow it like spaghetti. With the scope down, the doctor takes a few biopsies and removes the scope. The patient may feel it a little bit, based on how sensitive they are.

 

[23:29] Afterward, Dr. Friedlander brings out an ice pop or a slushie to soothe the throat. He recommends the child takes little sips because their throat may still be a little numb. As it wakes up, they can drink more. He recommends eating slowly for the rest of the day.

 

[24:21] As the scope may look in the stomach, patients are to take no food or drink for four hours before the procedure. If the scope will only look at the esophagus, patients are to take no food or drink for two hours before the procedure. Because the scope goes down the back of the throat, there is a slight risk of throwing up. The time for the procedure varies per doctor and location.

 

[25:32] For EoE, usually distal and proximal biopsies are taken, between two and four biopsies each from the bottom and the top of the esophagus, depending on the physician. If going to the stomach or the small intestine, additional biopsies would be taken from those areas.

 

[26:18] Your physician determines how frequently to do this procedure. Based on current data, it shouldn’t be done any sooner than six to eight weeks. With anesthesia involved, it wouldn’t be done that frequently because of the cost. With unsedated technologies, six weeks is OK. Ongoing research may lead to shorter intervals.

 

[27:30] The usual biopsy frequency for patients with EoE is between three to six months depending on your physician, what diet you’re on, and your therapy. If your eosinophilic disorders are stable, and you’re doing well, it might be just once every two years. There is a lot of variation depending on the institution and the physician.

 

[27:48] Before undergoing unsedated TNE, the child or adult needs to go through COVID-19 testing as the scope is going through the nose and there would be a risk of spreading COVID-19 if infected. Some kids find the COVID-19 test to be worse than the TNE.

 

[28:51] TNE can also be done with sedation, so Dr. Friedlander refers to it as unsedated TNE. Dr. Friedlander discusses the benefits of unsedated TNE: 1.) no sedation, 2.) possible increased frequency of endoscopy, depending on your physician, 3.) increased efficiency with less downtime, and 4.) decreased cost, depending on your insurance.

 

[30:37] When the fear and cost of anesthesia are out of the equation, the question is, how often do you need an endoscopy? Doctors have to be thoughtful about this. Just because you can scope doesn’t mean everybody needs a scope. But you can scope to see if your medication worked. It opens up opportunities for other diagnoses.

 

[32:00] A patient with trouble swallowing could have EoE or they could have reflux esophagitis, which is treated very differently from an eosinophilic disorder. An unsedated TNE could show which esophagitis the patient has.

 

[33:17] When a physician is getting started with unsedated TNE, older patients are the easiest because the anatomy is bigger and it’s easier to talk an older patient through it if the procedure is not going well. Some patients have been to ENT doctors and had good experiences with nasal tubes, they make good patients for unsedated TNE.

 

[34:31] Older patients routinely calm down easily. A child (or adult) who screams for minutes after a blood draw is probably not the best patient for an unsedated TNE procedure. The ideal patient is someone the physician can talk to and calm down if they get upset, and patients that are used to nasal medications.

 

[35:06] Until patients try the procedure, it’s not known how a patient will do. With kids under age five, it’s hard to use VR or talk to them. Some kids under five can do it. It’s about a 50-50 chance, compared to over 90% success with older kids.

 

[36:23] For physicians first starting to perform unsedated TNE, 5-to-8-year-olds are more challenging than 9-year-olds and up. Even so, some teenagers are not the right candidates for unsedated TNE. Dr. Friedlander always recommends they try it. Sedated endoscopy requires a whole day off work or school, and unsedated TNE can be done in minutes.

 

[37:38] Adult TNE has been around for years. Most adult centers have transnasal endoscopes but a lot of physicians haven’t been trained in TNE. Some use TNE in the high-risk adult population with significant heart or lung disease and for adult patients who don’t have a driver to take them home after sedation.

 

[38:38] More adult physicians working with eosinophilic disorders are asking how they can offer unsedated TNE to their patients. Adult transnasal endoscopes are thicker than pediatric scopes. Dr. Friedman’s company has longer 3 mm transnasal endoscopes for more comfortable adult use.

 

[39:29] Risks with unsedated TNE may include a sore or swollen nose, sore throat, sore chest, and a little bleeding from the biopsy sites. One to two percent may have some spitting up or throwing up. It’s a medical test. It may go well, it may not go well; probably it’s somewhere in the middle. It’s five to ten minutes and you’re back to school or work.

 

[40:19] There are the same risks as other endoscopies. A scope can go where it’s not supposed to. That seems to occur less than with a regular scope because you may not be going as far and the patient isn’t asleep and can report if something hurts.

 

[41:00] Unsedated endoscopy is a very important tool for a gastroenterologist to have. It’s not a replacement for all endoscopies. As of now, dilations are not routinely done unsedated. Transnasal endoscopes are not designed or sized for therapeutic use. They are for diagnosis and evaluation.

 

[43:27] Holly recalls a mutual patient that couldn’t tolerate unsedated TNE but had a gastric tube and tolerated a trans-gastric endoscopy. Dr. Friedlander researched it and found that the TNE scope fits well through a gastric tube. It takes additional manipulation to use it in that manner.

 

[45:50] If you are interested in trans-gastric endoscopy, discuss it with your physician.

 

[46:40] Concerning insurance for unsedated TNE, the first step is to talk to your physician and care team. If they agree the procedure is appropriate, you can discuss the cost estimate with your insurance provider.

 

[48:41] More and more centers around the country are doing unsedated TNE. Some have websites about it. Google transnasal endoscopy in your region or city and you’ll find websites. APFED is also working on adding information to its Specialist Finder to show these centers. Most importantly, ask your physician about it.

 

[49:40] Holly thanks Dr. Friedlander for sharing his expertise.

 

[49:50] Dr. Friedlander says he is passionate about getting this technology out to the right patients. It’s a good option for a large majority but it’s not for everybody. Know that this is an option. Ask your physicians about this option. Figure out if it’s the best option for you and your treatment plan. Physicians take their cues from their patients.

 

[50:34] Dr. Friedlander thanks Ryan and Holly for allowing him to speak about unsedated TNE and everyone who allowed all this technology to get to where it is, from adult doctors working on it 20 years ago, pediatric doctors working on it now, the eosinophilic disorders community, and APFED. This is an important option for patients.

 

[50:53] Dr. Friedlander asks you to talk to people about it. Let people know about it. It’s an important technology. It’s not for everybody but it’s for a lot of people.

 

[51:08] Ryan shares the APFED links shown below to find resources and specialists who treat eosinophilic esophagitis and to make connections with others impacted by eosinophilic diseases by joining APFED’s online community.

 

APFED says “Thank you” to all the patients, families, and team members who have helped make unsedated endoscopy and new technologies possible.

 

Mentioned in This Episode:

American Partnership for Eosinophilic Disorders (APFED)

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Joel Friedlander, DO

EvoEndo

Children’s Hospital Colorado

Jeremy Prager, MD

Aerodigestive Program

Robin Deterding, MD

Emily DeBoer, MD

@Apfedorg on Instagram

Apfed.org/eoe

Apfed.org/specialists

Apfed.org/connections

Real Talk: Eosinophilic Diseases Podcast

 

This episode is brought to you thanks to the support of our Education Partners Bristol Myers Squibb, GlaxoSmithKline, Mead Johnson Nutrition, Sanofi, and Regeneron.

 

Tweetables:

 

“If our ENT colleagues could do [unsedated endoscopy] and if our pulmonology colleagues could do [unsedated endoscopy], we want to make sure that our gastroenterology colleagues have these same options for our patients.” — Dr. Joel Friedlander

 

“As much as [anesthesia] scare[s] our patients, it also scares us as providers and doctors, because we don’t want to have our patients go to sleep unless we really need to because, although anesthesia is relatively safe, it’s not without its potential risks.” — Dr. Joel Friedlander

 

“When a physician is first getting started [with unsedated TNE], usually an older patient is better because the anatomy is bigger. It’s easier to talk a patient through it if they’re not doing as well.” — Dr. Joel Friedlander


“[Unsedated TNE] is an important option for our patients. … Talk to people about it. Let people know about it. It’s a really important technology. Even if not for everybody, it’s for a lot of people.” — Dr. Joel Friedlander