Bone Mineral Density in Pediatric Eosinophilic Esophagitis

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 living with EoE who serves on APFED’s Health Sciences Advisory Council, interview Anna Henderson, MD, a pediatric gastroenterologist at Northern Light Health in Maine, about bone mineral density in EoE patients. They discuss a paper she co-authored on the subject.

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] Co-host Ryan Piansky introduces the episode, brought to you thanks to the support of Education Partners Bristol Myers Squibb, Sanofi, Regeneron, and Takeda. Ryan introduces co-host Holly Knotowicz.

 

[1:17] Holly introduces today’s topic, eosinophilic esophagitis (EoE), and bone density.

 

[1:22] Holly introduces today’s guest, Dr. Anna Henderson, a pediatric gastroenterologist at Northern Light Health in Maine.

 

[1:29] During her pediatric and pediatric gastroenterology training at Cincinnati Children’s Hospital, she took a special interest in eosinophilic esophagitis. In 2019, Dr. Henderson received APFED’s NASPGHAN Outstanding EGID Abstract Award.

 

[1:45] Holly, a feeding therapist in Maine, has referred many patients to Dr. Henderson and is excited to have her on the show.

 

[2:29] Dr. Henderson is a wife and mother. She loves to swim and loves the outdoors. She practices general pediatric GI in Bangor, Maine, at a community-based academic center.

 

[2:52] Her patient population is the northern two-thirds of Maine. Dr. Henderson feels it is rewarding to bring her expertise from Cincinnati to a community that may not otherwise have access to specialized care.

 

[3:13] Dr. Henderson’s interest in EoE grew as a GI fellow at Cincinnati Children’s. Her research focused on biomarkers for disease response to dietary therapies and EoE’s relationship to bone health.

 

[3:36] As a fellow, Dr. Henderson rotated through different specialized clinics. She saw there were many unanswered questions about the disease process, areas to improve treatment options, and quality of life for the patients suffering from these diseases.

 

[4:00] Dr. Henderson saw many patients going through endoscopies. She saw the social barriers for patients following strict diets. She saw a huge need in EoE and jumped on it.

 

[4:20] Ryan grew up with EoE. He remembers the struggles of constant scopes, different treatment options, and dietary therapy. Many people struggled to find what was best for them before there was a good approved treatment.

 

[4:38] As part of Ryan’s journey, he learned he has osteoporosis. He was diagnosed at age 18 or 19. His DEXA scan had such a low Z-score that they thought the machine was broken. He was retested.

 

[5:12] Dr. Henderson explains that bone mineral density is a key measure of bone health and strength. Denser bones contain more minerals and are stronger. A low bone mineral density means weaker bones. Weaker bones increase the risk of fracture.

 

[5:36] DEXA scan stands for Dual Energy X-ray Absorptiometry scan. It’s a type of X-ray that takes 10 to 30 minutes. A machine scans over their bones. Typically, we’re most interested in the lumbar spine and hip bones.

 

[5:56] The results are standardized to the patient’s height and weight, with 0 being the average. A negative number means weaker bones than average for that patient’s height and weight. Anything positive means stronger bones for that patient’s height and weight.

 

[6:34] A lot of things can affect a patient’s bone mineral density: genetics, dietary history, calcium and Vitamin D intake, and medications, including steroid use. Prednisone is a big risk factor for bone disease.

 

[7:07] Other risk factors are medical and auto-immune conditions, like celiac disease, and age. Any patient will have their highest bone density in their 20s to 30s. Females typically have lower bone mineral density than males.

 

[7:26] The last factor is lifestyle. Patients who are more active and do weight-bearing exercises will have higher bone mineral density than patients who have more of a sedentary lifestyle.

 

[7:56] Ryan was told his bone mineral density issues were probably a side-effect of the long-term steroids he was on for his EoE. Ryan is now on benralizumab for eosinophilic asthma. He is off steroids.

 

[8:36] Dr. Henderson says the research is needed to find causes of bone mineral density loss besides glucocorticoids.

 

[8:45] EoE patients are on swallowed steroids, fluticasone, budesonide, etc. Other patients are on steroids for asthma, eczema, and allergic rhinitis. These may be intranasal steroids or topical steroids.

 

[9:01] Dr. Henderson says we wondered whether or not all of those steroids and those combined risks put the EoE population at risk for low bone mineral density. There’s not a lot published in that area.

 

[9:14] We know that proton pump inhibitors can increase the risk of low bone mineral density. A lot of EoE patients are on proton pump inhibitors.

 

[9:23] That was where Dr. Henderson’s interest started. She didn’t have a great way to screen for bone mineral density issues or even know if it was a problem in her patients more than was expected in a typical patient population.

 

[9:57] Holly wasn’t diagnosed with EoE until she was in her late 20s. She was undiagnosed but was given prednisone for her problems. Now she wonders if she should get a DEXA scan.

 

[10:15] Holly hopes the listeners will learn something and advocate for themselves or for their children.

 

[10:52] If a patient is concerned about their bone mineral density, talking to your PCP is a perfect place to start. They can discuss the risk factors and order a DEXA scan and interpret it, if needed.

 

[11:11] If osteoporosis is diagnosed, you should see an endocrinologist, specifically to discuss therapy, including medications called bisphosphonates.

 

[11:36] From an EoE perspective, patients can talk to their gastroenterologist about what bone mineral density risk factors may be and if multiple risk factors exist. Gastroenterologists are also more than capable of ordering DEXA scans and helping their patients along that journey.

 

[11:53] A DEXA scan is typically the way to measure bone mineral density. It’s low radiation, it’s easy, it’s fast, and relatively inexpensive.

 

[12:10] It’s also useful in following up over time in response to different interventions, whether or not that’s stopping medications or starting medications.

 

[12:30] Dr. Henderson co-authored a paper in the Journal of Pediatric Gastroenterology and Nutrition, called “Prevalence and Predictors of Compromised Bone Mineral Density in Pediatric Eosinophilic Esophagitis.” The study looked at potential variables.

 

[12:59] The researchers were looking at chronic systemic steroid use. They thought it was an issue in their patients, especially patients with multiple atopic diseases like asthma, eczema, and allergic rhinitis. That’s where the study started.

 

[13:22] Over the years, proton pump inhibitors have become more ubiquitous, and more research has come out. The study tried to find out if this was an issue or not. There weren’t any guidelines for following these patients, as it was a retrospective study. 

 

[13:42] At the time, Dr. Henderson was at a large institution with a huge EoE population. She saw that she could do a study and gather a lot of information on a large population of patients. Studies like this are the start of figuring out the guidelines for the future.

 

[14:34] Dr. Henderson wanted to determine whether pediatric patients with EoE had a lower-than-expected bone mineral density, compared to their peers.

[14:44] Then, if there were deficits, she wanted to determine where they were more pronounced. Were they more pronounced in certain subgroups of patients with EoE?

 

[14:59] Were they patients with an elemental diet? Patients with an elimination diet? Were they patients on steroids or PPIs? Were they patients with multiple atopic diseases? Is low bone mineral density just a manifestation of their disease processes?

 

[15:14] Do patients with active EoE have a greater propensity to have low bone mineral density? The study was diving into see what the potential risk factors are for this patient population.

 

[15:45] The study was a retrospective chart review. They looked at patients aged 3 to 21. You can’t do a DEXA scan on a younger patient, and 21 is when people leave pediatrics.

 

[16:03] These were all patients who had the diagnosis of EoE and were seen at Cincinnati Children’s in the period between 2014 and 2017. That period enabled full ability for chart review. Then they looked at the patients who had DEXA scans.

 

[16:20] They did a manual chart review of all of the patients and tried to tease out what the potential exposures were. They looked at demographics, age, sex, the age of the diagnosis of EoE, medications used, such as PPIs, and all different swallowed steroids.

 

[16:44] They got as complete a dietary history as they could: whether or not patients were on an elemental diet, whether that was a full elemental diet, whether they were on a five-food, six-food, or cow’s milk elimination diet.

 

[16:58] They teased out as much as they could. One of the limitations of a retrospective chart review is that you can’t get some of the details, compared to doing a prospective study. For example, they couldn’t tease out the dosing or length of therapy, as they would have liked.

 

[17:19] They classified those exposures as whether or not the patient was ever exposed to those medications, whether or not they were taking them at the time of the DEXA scan, or if they had been exposed within the year before the DEXA scan.

 

[17:40] They also looked at whether the patients had other comorbid atopic disorders, to see if those played a role, as well.

 

[18:03] The study found that there was a slightly lower-than-expected bone mineral density in the patients. The score was -0.55, lower than average but not diagnostic of a low bone mineral density, which would be -2 or below.

 

[18:27] There were 23 patients with low bone mineral density scores of -2 or below. That was 8.6% of the study patients. Typically, only 2.5% of the population would have that score. It was hard to tease out the specific risk factors in a small population of 23.

 

[18:57] They looked at what the specific risk factors were that were associated with low bone mineral density, or bone mineral density in general.

 

[19:12] After moving from Colorado, Holly has transferred to a new care team, and doctors wanted her baseline Vitamin D and Calcium levels. No one had ever tested that on her before. Dr. Henderson says it’s hard because there’s nothing published on what to do.

 

[19:58] The biggest surprise in the study was that swallowed steroids, or even combined steroid exposure, didn’t have any effect on bone mineral density. That was reassuring, in light of what is known about glucocorticoid use.

 

[20:16] The impact of PPI use was interesting. The study found that any lifetime use of PPIs did seem to decrease bone mineral density. It was difficult to tease out the dosing and the time that a patient was on PPIs.

 

[20:34] Dr. Henderson thinks that any lifetime use of PPIs is more of a representation of their cumulative use of PPIs. At the time of the study, from 2014 to 2017, PPIs were still very much first-line therapy for EoE; 97% of the study patients had taken PPIs at some time.

 

[21:02] There are so many more options now for therapy when a patient has a new diagnosis of EoE, especially with dupilumab now being an option.

 

[21:11] Dr. Henderson speaks of patients who started on PPIs and have stayed on them for years. This study allows her to question whether we need to continue patients on PPIs. When do we discuss weaning patients off PPIs, if appropriate?

 

[22:05] Ryan says these podcasts are a great opportunity for the community at large and also for the hosts. He just wrote himself a note to ask his endocrinologist about coming off PPIs.

 

[22:43] Dr. Henderson says that glucocorticoid use is a known risk factor for low bone mineral density and osteoporosis. In the asthma population, inhaled steroids can slightly decrease someone’s growth potential while the patient is taking them.

 

[23:10] From those two facts, it was thought that swallowed steroids would have a similar effect. But since they’re swallowed and not systemic, maybe things are different.

 

[23:23] It was reassuring to Dr. Henderson that what her study found was that the swallowed steroid didn’t affect bone mineral density. There was one other study that found that swallowed steroids for EoE did not affect someone’s height.

 

[23:51] Dr. Henderson clarifies that glucocorticoids include systemic steroids like prednisone and hydrocortisone.  

 

[23:57] Based on Dr. Henderson’s retrospective study, fluticasone as a swallowed steroid did not affect bone mineral density. It was hard to tease out the dosing, but the cumulative use did not seem to result in a deficit for bone mineral density.

 

[24:16] Holly shared that when she tells a family of a child she works with that the child’s gastroenterologist will likely recommend steroids, she will now give them the two papers Dr. Henderson mentioned. There are different types of steroids. The average person doesn’t know the difference.

 

[25:15] Dr. Henderson thinks that for patients who have multiple risk factors for low bone mineral density, it is reasonable to have a conversation about bone health with their gastroenterologist to see whether or not a DEXA scan would be worth it.

 

[25:56] If low bone mineral density is found, that needs to be followed up on.

 

[26:03] There are no great guidelines, but this study is a good start on what these potential risk factors are. We need some more prospective studies to look at these risk factors in more detail than Dr. Henderson’s team teased out in this retrospective study.

 

[26:23] Dr. Henderson tells how important it is for patients to participate in prospective longitudinal studies for developing future guidelines.

 

[26:34] Holly points out that a lot of patients are on restrictive diets. It’s important to think about the whole picture if you are starting a medication or an elimination, or a restricted diet. You have to think about the impact on your body, overall.

 

[27:11] People don’t think of dietary therapy as medication, but it has risks and benefits involved, like a medication.

 

[27:50] Dr. Henderson says, in general, lifestyle management is the best strategy for managing bone health. Stay as active as you can with weight-bearing exercises and eating a well-balanced diet. If you are on a restrictive diet, make sure it’s well-balanced.

 

[28:12] Dr. Henderson says a lot of our patients have feeding disorders, so they see feeding specialists like Holly. A balanced diet is hard when kids are very selective in their eating habits.

 

[29:10] Dr. Henderson says calcium and Vitamin D are the first steps in how we treat patients with low bone mineral density. A patient who is struggling with osteoporosis needs to discuss it with their endocrinologist for medications beyond supplementation.

 

[29:31] Ryan reminds listeners who are patients always to consult with their medical team. Don’t go changing anything up just because of what we’re talking about here. Ask your care team some good questions.

 

[29:47] Dr. Henderson would like families to be aware, first, that some patients with EoE will have bone mineral density loss, especially if they are on PPIs and restrictive diets. They should start having those discussions with their providers.

 

[30:04] Second, Dr. Henderson would like families to be reassured that swallowed steroids and combined steroid exposure didn’t have an impact on bone mineral density. Everyone can take that away from today’s chat.

 

[30:18] Lastly, Dr. Henderson gives another plug for patient participation in prospective studies, if they’re presented with the opportunity. It’s super important to be able to gather more information and make guidelines better for our patients.

[30:35] Holly thanks Dr. Henderson for coming on Real Talk — Eosinophilic Diseases and sharing her insights on bone mineral density, and supporting patients in Maine.

 

[30:57] Dr. Henderson will continue to focus on the clinical side. She loves doing outreach clinics in rural Maine. It’s rewarding, getting to meet all of these patients and taking care of patients who would otherwise have to travel hours to see a provider.

 

[32:01] Ryan thinks the listeners got a lot out of this. For our listeners who would like to learn more about eosinophilic disorders, please visit APFED.org and check out the links in the show notes.

 

[32:11] If you’re looking to find specialists who treat eosinophilic disorders, we encourage you to use APFED’s Specialist Finder at APFED.org/specialist.

 

[32:19] If you'd like to connect with others impacted by eosinophilic diseases, please join APFED’s online community on the Inspire Network at APFED.org/connections.

 

[32:28] Ryan thanks Dr. Henderson for joining us today for this great conversation. Holly also thanks APFED’s Education Partners Bristol Myers Squibb, Sanofi, Regeneron, and Takeda for supporting this episode.

 

Mentioned in This Episode:

Anna Henderson, MD, a pediatric gastroenterologist at Northern Light Health in Maine

Cincinnati Children’s

“Prevalence and Predictors of Compromised Bone Mineral Density in Pediatric Eosinophilic Esophagitis.”

Journal of Pediatric Gastroenterology and Nutrition

 

APFED on YouTube, Twitter, Facebook, Pinterest, Instagram

Real Talk: Eosinophilic Diseases Podcast

apfed.org/specialist

apfed.org/connections

 

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

 

Tweetables:

 

“DEXA scan stands for dual-energy X-ray absorptiometry scan. It’s a type of X-ray where a patient lies down for 10 to 30 minutes. A machine scans over their bones. Typically, we’re most interested in the lumbar spine and hip bones.” — Anna Henderson, MD

 

“We wondered whether or not all of those steroids and those combined risks even put our EoE population at risk for low bone mineral density. There’s not a lot published in that area.” — Anna Henderson, MD

 

“If a patient is worried [about their bone mineral density], their PCP is a perfect place to start for that. They’re more than capable of discussing the risk factors specific for that patient, ordering a DEXA scan, and interpreting it if need be.” — Anna Henderson, MD

 

“I think we need some more prospective studies to look at these risk factors in a little bit more detail than we were able to tease out in our retrospective review.” — Anna Henderson, MD

 

“Just another plug for the participation in prospective studies, if you’re presented with the opportunity. It’s super important to be able to gather more information and to be able to make guidelines better for our patients about these risks.” — Anna Henderson, MD