New Findings from the EGID Partners Registry with Dr. Elizabeth Jensen

Real Talk: Eosinophilic Diseases

Description:

Co-hosts 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 latest findings from the EGID Partners Registry.

In this episode, Ryan and Holly discuss with Dr. Elizabeth Jensen two studies drawn from data obtained by EGID Partners Registry questionnaires. One study focuses on extraintestinal pain experienced by patients living with EoE and other eosinophilic gastrointestinal disorders (EGIDs). The second study considers vitamin and iron deficiencies reported by patients living with EoE and other EGIDs. Dr. Jensen hints at connected research she would like to pursue next. Listen for more information about extraintestinal pain, vitamin deficiencies, EoE, and EGIDs.

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:

[:58] Ryan Piansky introduces the episode. He and co-host Holly Knotowicz will talk about the latest findings from the EGID Partners Registry.

[1:28] Holly introduces Dr. Elizabeth Jensen, an Associate Professor at the Wake Forest School of Medicine and an Adjunct Professor in the Department of Medicine at the University of North Carolina at Chapel Hill.

[1:58] Dr. Jensen has been working on research related to eosinophilic gastrointestinal diseases since she was in graduate school.

[2:11] Dr. Jensen’s background is in maternal and child health. She was interested in how early life exposures alter colonization of the gut microbiome and how that can lead to immune dysregulation.

[2:33] Dr. Jensen became interested in EoE and eosinophilic gastrointestinal diseases because her family members had been affected by these conditions and researchers knew next to nothing about the pathogenesis of these conditions.

[2:52] Dr. Jensen’s early research explored early life exposures that relate to the development of eosinophilic gastrointestinal diseases.

[3:02] That research paved the way for a variety of ongoing research studies in Denmark, the U.S., and through the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR).

[3:30] The Eosinophilic Gastrointestinal Disorders (EGID) Partners Registry is a registry of individuals who have been diagnosed with any one of the eosinophilic gastrointestinal diseases or multiple ones.

[4:21] The registry is also for individuals who haven’t been diagnosed. The EGID Partners Registry gives a voice to individuals who are living with these conditions, in terms of directing where we go with research and asking patient-centered questions.

[4:58] To participate in the registry, go to EGIDPartners.org and register. Once you have registered you will receive a link to a questionnaire. The questionnaire can seem long.

[5:23] After the first questionnaire, the registry sometimes asks for updates to your baseline information and asks new questions that have been suggested by others.

[5:45] The EGID Partners Registry has a Scientific Advisory Committee, and patient advocacy groups, including APFED, physicians, and researchers, who direct where to go with the rich data that has been collected.

[6:07] Some of the questions are specific and asked by registry members with individual interests. Some of the questions are directed by input received by patient advocacy groups.

[6:48] After collecting these data, EGID Partners analyzes them and disseminates them by presenting them at meetings to get information to providers and individuals affected by these conditions.

[7:50] EGID Partners Registry did a study titled “Extraintestinal Symptoms of Pain in Eosinophilic Gastrointestinal Diseases” and published a poster on it. They explored joint pain, leg pain, and headaches, to see if they were related to an eosinophilic condition.

[8:29] They studied pain severity and frequency as well as migraines. A high proportion of individuals reported pain. They studied those with EoE only and those with another EGID, including eosinophilic gastritis, eosinophilic enteritis, and eosinophilic colitis.

[9:06] The second group included individuals with or without EoE. In general, patients who have one of these non-EoE EGIDS, with or without EoE, tend to experience more frequent pain and more severe pain.

[9:30] They’ve also seen that result in looking at other comorbidities. It reinforces the idea that patients who have multi-segmental EGIDs, or one of these lower EGIDS, tend to experience, on average, more severe extraintestinal symptoms.

[10:39] The three areas of pain highlighted on the poster were legs, joints, and headaches. This was based on feedback from patients saying, “This is what we’re experiencing, is it something that you could look into?”

[10:48] It doesn’t preclude the possibility that there may be other types of extraintestinal manifestations that we should be looking at in the future.

[11:27] This study by the EGID Partners Registry feels very impactful to Dr. Jensen. It brings awareness to some of the challenges that individuals with these conditions are experiencing. Holly points out it’s a way for patients to get access to experts.

[12:20] In this study, the EGID Partners Registry also looked at what proportion of individuals were taking either over-the-counter pain management medications or prescription medication. [12:39] About the migraine headache pain, most of it was over-the-counter use, although some reported prescription medication.

[12:54] Ryan grew up experiencing leg pain all the time. He attributed it to his other chronic disorders. It wasn’t until some years ago at an APFED conference that he heard a physician mention leg pain. Ryan had never considered it as an EoE symptom.

[13:38] One of the challenges the EGID Partners Registry has is that they don’t have enough individuals registered to start dividing the sample up further, by age. Roughly two-thirds of the respondents were adults.

[14:12] It’s also hard to get kids to report accurately what they are experiencing. It often comes down to the caregiver reporting it to the EGID Partners Registry, which brings its challenges.

[14:34] Ryan calls all patients listening to sign up with the EGID Partners Registry to allow the registry to get to some of these deeper questions.

[14:47] Dr. Jensen adds that people often want to understand why these pains are connected to EGIDs. EGID Partners Registry doesn’t know why.

[15:02] There are underlying biological processes that could potentially contribute to this observation of the increased prevalence of extraintestinal pain manifestations. In the EGID population, there is the enrichment of connective tissue disorders and more.

[15:36] There is also evidence that there are increased comorbidities associated with a more inflammatory milieu. That could contribute to these extraintestinal manifestations of pain.

[15:55] Dr. Jensen hopes to bring greater awareness to patients and providers, honoring what the patient is experiencing and digging a little deeper to understand what may be going on for this patient.

[16:17] EGID Partners Registry also did a study on vitamin deficiency and supplement use among patients with EGIDs. They looked at those who had been diagnosed with EoE alone and those who had another EGID, with or without EoE.

[16:47] In this study, unlike with the pain manifestation, they didn’t see a statistically significant difference between EoE alone and the other EGIDs. There was some higher proportion in those with the lower EGIDs, but it didn’t reach statistical significance.

[17:16] They saw a high proportion reporting physician-diagnosed vitamin deficiency, mainly Vitamin D and a few others. That suggests the need to screen patients for vitamin deficiency with a new diagnosis and when monitoring response to therapy.

[18:28] There are reasons why there could be vitamin deficiencies. You may have a restrictive diet or be avoiding certain foods because you know they are going to bother you, or for the lower EGIDs, it may be that you’re experiencing malabsorption.

[19:04] Holly plans to send this study to the people she is working with. She will ask them to read it, and then work to get a baseline.

[19:56] A patient could ask for this test from any provider. Dr. Jensen says if it helps them to bring the evidence from these papers, that’s great; she hopes this empowers patients when they talk with their providers about the care that makes sense for them.

[20:41] EGID Partners Registry compared those reporting a deficiency between those with EoE alone and those without EoE. Eighty-two percent of those with EoE reported a Vitamin D deficiency. About a fourth of each group reported a B12 deficiency.

[21:27] Iron was another deficiency reported by 55% in the EoE group and 69% in the Non-EoE EGID group. Vitamins D and B12, and Iron were the top deficiencies reported. Many of the respondents reported they were taking vitamins or dietary supplements.

[22:32] Dr. Jensen thinks a nice follow-up study to this would be to learn the proportion of respondents taking vitamin injections or infusions because of malabsorption issues with oral supplements.

[22:37] Dr. Jensen thinks this study likely reflects an under-ascertainment of vitamin deficiency. A lot of patients aren’t getting screened. We don’t have the data yet because it’s not a universal recommendation to screen for vitamin deficiencies.

[23:01] Dr. Jensen thinks awareness and increased screening will be key. Then we can start thinking about how we mitigate this.

[23:24] Patients did not report symptoms of vitamin deficiencies. Dr. Jensen thinks that’s another good follow-up question. She stresses that it’s important to screen for deficiencies whether or not symptoms of deficiencies are present.

[24:06] Holly considers her patients with various symptoms of vitamin deficiencies and wants to get on the website and ask questions. Dr. Jensen tells her there is a link on the registry site where you can suggest a question. She asks Holly to suggest a question!

[24:30] Patients were asked if they have ever had a vitamin deficiency and were also asked if they currently take vitamins or supplements. A vitamin pill is one type of supplement.

[25:10] The study also looked at the use of a variety of complementary and alternative medicine approaches that patients turn to because they’re not getting adequate relief from traditional approaches to addressing their conditions.

[25:34] They saw a higher proportion of individuals with non-EoE EGIDs reporting the use of these kinds of alternative treatment approaches. Roughly a fourth of non-EoE EGID patients reported the use of a chiropractor, vs. 10% of EoE patients.

[26:11] Roughly one-fourth of non-EoE EGID patients reported turning to different herbal approaches in trying to get some relief for their conditions.

[26:49] Dr. Jensen says as a researcher, whenever she does a study, she is led to more questions. All of the research so far has opened the door to many more questions, including questions about individuals who don’t have either EoE or another EGID.

[27:20] Dr, Jensen wonders, is this extraintestinal pain unique to those who have EoE and non-EoE EGIDs? How do we best mitigate this? What does the workup look like for the patient coming in with joint pain or leg pain?

[27:37] How can we understand the factors that contribute to this pain? How do we get providers thinking about screening for vitamin deficiencies so we have a better understanding of their prevalence in this patient population?

[28:04] If patients are not absorbing vitamins orally, How do we mitigate this? How do we optimize their nutrition so they are not dealing with vitamin deficiencies which can lead to other consequences down the road?

[28:24] The surprises are always, “What doors are getting opened as a result?” We’ve answered some questions but there are so many questions that we still need to answer.

[28:56] Ryan asks if a correlation was found in these studies between vitamin deficiencies and extraintestinal pain. He notices that missing his vitamins correlates with more leg pain. Dr. Jensen asks Ryan to go onto the website and pose that question!

[29:10] Dr. Jensen has not looked at the data in that way but she thinks it would be an interesting way to bring these two studies together and try to explain some of what they are observing.

[29:21] Holly thanks Dr. Jensen for sharing her expertise and this fascinating research to help all EGID patients have less painful and better quality lives.

[29:52] Dr. Jensen makes this request. “Please consider checking out the EGID Partners Registry website, joining, learning more about how you can contribute to this research, and introducing questions.”

[30:04] “We’re always looking for new questions and are excited to think about how we can partner with patients in addressing questions that matter to them. Help us continue to answer some of these critical questions.”

[30:32] One topic Dr Jensen is interested in researching is the implications for reproductive health for having these conditions. Some research in another data source suggests potential implications.

[30:54] EGID Partners Registry observed and reported this year that there may be some indication of a longer time to pregnancy and a lower proportion of EGID patients experiencing a pregnancy. They want to look at that and understand it better.

[31:12] They want to understand it with more detail than they can get from the administrative data source with the initial questionnaire. EGID Partners Registry is pushing out a reproductive health history questionnaire now.

[31:29] EGID Partners Registry needs individuals to join and respond to the reproductive health questionnaire to help them understand this more deeply and some of the findings they are seeing initially in some of these other data sources.

[31:49] Ryan encourages listeners to learn more about Dr. Jensen’s research and EGID Partners Registry by visiting EGIDPartners.org. To learn more about eosinophilic gastrointestinal disorders, visit APFED.org/egids.

[32:13] To find a specialist in eosinophilic disorders, use APFED’s Specialist Finder at APFED.org/specialist. To connect with others impacted by eosinophilic diseases, join APFED’s online community on the Inspired network at APFED.org/connections.

[32:31] Ryan thanks Dr. Jensen for joining us on Real Talk. Dr. Jensen thanks Ryan and Holly for having her on the podcast to talk about this research. Holly also thanks Education Partners, GSK, Sanofi, and Regeneron for supporting this episode.

Mentioned in This Episode:

Dr. Elizabeth Jensen PhDAssociate Professor at Wake Forest University School of MedicineAdjunct Professor in the Department of Medicine at the UNC at Chapel Hill

Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR)

EGID Partners Registry

Digestive Disease Week (DDW)

“Extraintestinal Symptoms of Pain in Eosinophilic Gastrointestinal Diseases”

“Frequent Report Of Vitamin Deficiencies And Use Of Supplements And Complementary/Alternative Treatment Approaches In Patients With Eosinophilic Gastrointestinal Diseases” (EGIDPartners Registry)

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.org/egids

apfed.org/specialist

apfed.org/connections

Education Partners: This episode of APFED’s podcast is brought to you thanks to the support of GSK, Sanofi, and Regeneron.

Tweetables:

“The Eosinophilic Gastrointestinal Disorders (EGID) Partners Registry is a registry of individuals who have been diagnosed with any one of the eosinophilic gastrointestinal diseases or with multiple ones.” — Dr. Elizabeth Jensen

“The EGID Partners Registry studied extraintestinal pain severity and frequency and migraines. There was a high proportion of individuals reporting experiencing pain.” — Dr. Elizabeth Jensen

“EGID Partners Registry also did a study on vitamin deficiency and supplement use among patients with EGIDs.” — Dr. Elizabeth Jensen

“Is this unique to EoE and non-EoE EGIDs? … How do we best mitigate this for the patient who is coming in with joint pain or leg pain? What does the workup look like for those patients?” — Dr. Elizabeth Jensen

“The surprises are always, ‘What doors are getting opened as a result?’ We’ve answered some questions but there are so many questions that we still need to answer.” — Dr. Elizabeth Jensen