All posts by Mary Jo Strobel

Understanding the Role of Speech-Language Pathologists in Eosinophilic Esophagitis Treatment

APFED Blog, What's New

Eosinophilic esophagitis (EoE) is a chronic condition that affects the esophagus, the tube that carries food from the mouth to the stomach. It is characterized by inflammation caused by an excess of eosinophils, a type of white blood cell. This inflammation can lead to symptoms like difficulty swallowing, food getting stuck in the throat, and chest pain.

EoE is becoming more recognized as a significant cause of swallowing problems in both children and adults. The inflammation caused by EoE can narrow the esophagus and make eating uncomfortable.

For some, managing EoE may require a team approach involving various healthcare professionals, including gastroenterologists, allergists, and other specialists, such as dietitians and speech-language pathologists (SLPs). SLPs help patients manage the practical challenges of eating and swallowing.

Holly Knotowicz, M.S., CCC-SLP is a certified speech language pathologist who specializes in feeding assessment and therapy. Holly herself has EoE and as a co-host of APFED’s podcast, she candidly shares her personal experiences with the condition. Here, she answers a few questions about how SLPs can help those who have EoE:

Q: How might one know if an SLP would benefit them or their child?

A: If you or your child are having any issues surrounding eating (eating preferred foods, learning about new foods, expanding variety of intake), swallowing (discomfort when swallowing, foods becoming stuck) and taking pills, an SLP will be able to assist and support you.

An SLP can help you understand which compensatory strategies can make swallowing more comfortable. This can be anywhere from learning how to modify your favorite food so you can enjoy it again to swallowing medications. For children specifically, they can help them learn about new foods, or different variations of their preferred foods in a new form (especially for children on elimination diets, chicken tenders to GF/DF chicken tenders, allergen safe bread, etc).

Q: What kinds of exercises or techniques do you use to help people with EoE who have trouble swallowing? Do these methods change depending on how old the person is?

A: For anyone with EoE, there are several compensatory strategies that can be very helpful to make eating and swallowing more comfortable. They are generally the same strategies for all ages. Below are some examples of things you can start doing on your own.

  • Utilize dips/sauces to help lubricate your esophagus when swallowing
  • Incorporate taking sips of a drink after every few bites ( otherwise known as a liquid wash) to help clear esophageal residue and helps foods go down easier
  • Taking smaller bites and encouraging thorough chewing
  • Cook foods in wet/moist preparation (crock pot, instant pot, soups/stews) versus grilling.

Q: How do you work with patients and other healthcare professionals to create eating plans or strategies that fit with managing EoE?

A: Ensuring everyone understands the diagnosis and how it affects the individual is the first step. I also participate in healthcare team discussions or school meetings to foster a better understanding of the diagnosis and to develop strategies to effectively implement a feeding and eating plan.

Feeding and eating plans often include:

  • Tube feeding schedules for children requiring enteral feedings.
  • High-calorie supplement goals, such as supervised consumption during school hours or in designated areas.
  • Volume goals, with prompts to encourage meal completion.
  • Mealtime and presentation adjustments, recognizing that children with EoE may need extra time to eat.
  • Compensatory strategies tailored to individual needs.

These plans may require the development of a 504 plan to accommodate eating at school.

I also collaborate with other professionals involved in the patient’s care, such as occupational therapists, dietitians, allergists, gastroenterologists, endocrinologists, LCSWs, and psychologists to ensure their goals are appropriate for EoE and support the patient’s quality of life.

Q: What long-term strategies do you use to help patients with EoE cope with their swallowing difficulties over time?

A: Some longtime strategies that can be really helpful include ensuring you find a drink that helps you clear the food in your mouth and esophagus. Some patients report that carbonated water helps move food more easily than regular water. They also report that sugary drinks tend to make the foods stick more.

We help change perspectives on how food is prepared and eaten to make it easier to swallow. For example, if a person typically avoids dry or crumbly foods but really wants to eat them, they may be able to make modifications and add dips or sauces to help make swallowing those foods more comfortable.

Oftentimes pairing foods that tend to stick with a carrier food such as something crunchy like chips and crackers, or dips/sauces, can help create more salvia in your mouth and make it easier to chew and swallow. This is especially helpful for children and adults who have strong sensory preferences and dislike moist/wet foods on their own learn to like these textures when paired with a carrier food.

To learn more tips and strategies from Holly, check out this webinar she presented to share how to increase volume and variety during mealtimes:

Did You Know?

December 12, 2024 is World Swallowing Day!

 

ACG Annual Scientific Meeting & Postgraduate Course 2024

APFED Blog, Research, What's New, ,

The American College of Gastroenterology (ACG) hosted its Annual Scientific Meeting & Postgraduate Course in Philadelphia, Oct. 25-30, 2024. ACG is a recognized leader in educating GI professionals and the general public about digestive disorders.

During the conference, attendees had the opportunity to participate in a number of sessions to further their understanding of eosinophilic GI disease, including clinical presentation, evaluation, and treatment of eosinophilic gastrointestinal disorders based on current evidence.

Attendees visited the APFED booth in the exhibit hall to pick up educational materials to share with their patients and to learn about professional resources, and to chat with us about the needs of patients.

Other meeting highlights are as follows:

  • A session on esophageal disorders was hosted and included EoE and updates from the ACG Guidelines which are expected be published in early 2025. See this interview with Dr. Evan Dellon posted to the Gastroenterology Learning Network who summarizes the guidelines.
  • Sanofi and Regeneron (makers of Dupixent® (dupilumab), a biologic approved in the U.S. to treat EoE) sponsored a number of special learning opportunities that spotlighted EoE, including two Product Theaters and a Satellite Symposium. Product theaters discussed how and why EoE management strategies should evolve as our understanding of disease pathogenesis grows. The other showcased how inhibiting two key cytokines can impact disease and the efficacy and safety of a treatment option. The Satellite Symposium equipped clinicians with the knowledge and skills necessary to optimize diagnosis and management of EoE in pediatric and adult patients. There were also several posters presented on dupliumab.
  • The findings from a phase 3 clinical trial for a potential EoE treatment called cendakimab (a biologic being developed by Bristol-Myers Squibb) were presented. Read more in our blog post here.
  • The local tolerability and efficacy of an extended release formulation of fluticasone (EP-104GI) to potentially treat EoE were presented as posters.

Many research posters related to eosinophilic GI disease were also presented throughout the conference. Just few highlights from the poster session are below. To access all of the posters, visit https://acgposters2024.eventscribe.net/

  • “Prevalence and Costs of Eosinophilic Esophagitis in the United States” is research that reports prevalence of EoE continues to rise rapidly in the United States. In 2022, the prevalence was estimated at 1 in 617 for those under 65 years old, and 1 in 1,562 for those 65 and older. When standardized to the overall U.S. population, the estimated prevalence is around 1 in 700 people. This represents a substantial 5-fold increase since 2009. The rising prevalence of EoE has led to a significant financial burden, with estimated annual healthcare costs reaching $1.32 billion in 2024. Given EoE’s growing prevalence and impact, it is now considered a commonly encountered condition that should be considered for patients with upper gastrointestinal symptoms.
  • “No Association Between Eosinophilic Esophagitis and Esophageal Cancer in United States Adults: A Case Control Study Co-incidence of EoE” described findings from one study cohort that EoE is not associated with development of esophageal cancer.
  • “Predictive Artificial Intelligence Analysis of Determinants of Health Outcomes in Hospitalized Patients with Eosinophilic Esophagitis” aimed to use predictive AI to look at factors that influence health outcomes of those hospitalized for EoE, highlighting the potential of AI to help healthcare providers allocate resources,
  • A number of posters about dupilumab (Dupixent®) were presented including favorable results from the Phase 3 KIDS study that assessed efficacy of this drug in children ages 1-12 years with improvements of histologic and endoscopic aspects of EoE up to week 52. Another poster, “Efficacy and Safety of Dupilumab in Patients With Eosinophilic Esophagitis: Pooled Analysis and a Systematic Review” explores the current research on dupilumab in EoE, presenting key findings from available studies suggesting this drug effectively induces histological remission and improves clinical outcomes in EoE patients. The safety profile appears favorable when compared to placebo, with low rates of total and serious adverse events.
  • “Exploring Demographic Variations in Eosinophilic Esophagitis: A Nationwide Study of Hospital Admissions From 2019-2023” highlights important racial and gender disparities in the incidence of eosinophilic esophagitis (EoE). Higher prevalence among White and Black populations compared to other racial groups suggests potential genetic or environmental factors may influence EoE risk, and the findings underscore the need for healthcare strategies that are tailored to specific patient populations to improve treatment outcomes and efficacy in managing this condition.
  • “Unmet Needs Among Patients with Eosinophilic Esophagitis Despite Biologic Use” describes a real-world analysis looked at patients with Eosinophilic Esophagitis (EoE) who use biologic medications as their main treatment. Even though the biologics improved their symptoms, the analysis found that most patients still had to adapt their eating behaviors.
  • “Risk of Barrett’s Esophagus in Eosinophilic Esophagitis: A Multi-Center Research Network Analysis” utilized a multi-institutional network to assess BE risk in individuals with EoE and found a higher risk of BE in patients with EoE in their study cohort.
  • “Understanding the Current State of Eosinophilic Esophagitis Research: Insights from ClinicalTrials.gov” reported the research landscape on Eosinophilic Esophagitis (EoE) is diverse, but heavily leans towards interventional studies, especially those exploring pharmacological interventions. The data also highlights an underrepresentation of federally funded research in the field. Given the prevalence of ongoing studies, this analysis serves as a valuable resource for clinicians, researchers, and policymakers engaged in EoE research and treatment.
  • “Role of TSLP in an Experimental Mouse Model of Eosinophilic Esophagitis” TSLP contributes to inflammation in Eosinophilic Esophagitis (EoE). When researchers induced EoE in mice, TSLP levels increased in the esophagus. To test TSLP’s importance, researchers gave the mice an antibody to block TSLP. This reduced the number of inflammatory cells (eosinophils) in the esophagus by 60%. It also decreased other signs of EoE, like thickening of the esophagus lining. These results suggest TSLP plays a key role in driving the inflammation and tissue changes seen in EoE. Targeting TSLP could lead to new treatment approaches for patients in the future.
  • “Family History of Eosinophilic Esophagitis or Other Eosinophilic Gastrointestinal Disease Is Not Associated With Non-Response to Topical Steroid Treatment in Eosinophilic Esophagitis.” This study examined whether clinical features or topical steroid treatment response differed between eosinophilic esophagitis (EoE) patients with and without a family history of EoE or other eosinophilic gastrointestinal diseases (EGID). In summary, they found that while EoE patients with a family history showed some initial presentation differences, family history itself did not emerge as a major risk factor for treatment outcomes.
  • “Seasons of Eosinophilic Esophagitis: Pinpointing the Summer Summit of Exacerbations” This study found significant seasonal variation in eosinophilic esophagitis (EoE) presentations, with a peak during summer months. These findings suggest aeroallergens may exacerbate EoE, highlighting the importance of considering seasonal allergen exposure when managing EoE in adult patients.
  • “Efficacy of Dupilumab on Facilitated Food Introduction in Eosinophilic Esophagitis” described the potential role of dupilumab in facilitating introduction of EoE trigger foods. Researchers conducted an open-label pilot study that evaluated the use of dupilumab in 21 patients with food-triggered eosinophilic esophagitis (EoE). Participants received dupilumab alongside standard EoE therapy and elimination of their trigger food, followed by a 12-month food reintroduction process. Dupilumab enabled the reintroduction of EoE trigger foods without exacerbating symptoms or compromising histological and endoscopic outcomes, effectively controlling symptoms, preserving histologic integrity, and preventing endoscopic progression. This suggests dupilumab has the potential to reduce the burden of dietary restrictions for EoE patients, thereby enhancing their quality of life.
  • “Predictors of Patients Receiving No Medication for Treatment of Eosinophilic Esophagitis in the United States: Data from the TARGET-EGIDS Cohort” describes a real-world analysis to evaluate predictors for absence of recorded medications and prescriptions prior to or following an initial EoE diagnosis. Among newly diagnosed patients with EoE, ~1 in 10 had no recorded pharmacologic therapy. Older patients and those without complications were more likely not to receive a medication for EoE. Further evaluation, including whether alternative treatments were used and outcomes, is warranted for this group.
  • “Gastroparesis in Patients With Eosinophilic Gastrointestinal Diseases is Associated With Increased Symptoms and Comorbid Conditions” In a study analyzing 526 participants from EGIDPartners.org (402 with EoE and 124 with non-EoE EGID), researchers found that 8% of participants had gastroparesis (GP), which is significantly higher than the 0.16% prevalence in the general U.S. population. GP was more prevalent in non-EoE EGID patients (16%) compared to EoE patients (5%), and patients with GP experienced increased symptoms including chest pain, abdominal pain, nausea, vomiting, and constipation. The study also revealed that EGID patients with GP were more likely to have atopic disorders (such as eczema and food allergies) and autoimmune or connective tissue disorders (like Raynaud’s and Ehlers Danlos syndrome). While the findings suggest a potential relationship between these conditions, further research is needed to establish a direct connection between EGIDs and gastroparesis.
  • “Effect of Budesonide Oral Suspension on Dysphagia Symptom Outcomes in Patients With Eosinophilic Esophagitis: A Pooled Post Hoc Analysis of Data From a Phase 2 and a Phase 3 Trial” This post hoc analysis of pooled data from phase 2 and 3 studies examined the efficacy of budesonide oral suspension (BOS) 2.0 mg twice daily versus placebo in 410 patients with eosinophilic esophagitis (EoE). Using an adapted methodology to analyze Dysphagia Symptom Questionnaire (DSQ) scores, the study found that patients treated with BOS (n=263) showed significantly greater improvements in both 14-day and 7-day prorated DSQ scores compared to placebo (n=147) at weeks 4, 8, and 12 of therapy. The treatment groups had similar baseline scores, but BOS-treated patients demonstrated significant symptom improvement as early as week 4. These findings, consistent with the prespecified analysis, reinforce the effectiveness of BOS 2.0 mg twice daily in managing dysphagia symptoms in EoE patients over a 12-week treatment period.

 

Learn more about the 2024 ACG Annual Scientific Meeting & Postgraduate Course at acgmeetings.gi.org.

 

Promising Results of Cendakimab to Treat EoE

Research, What's New

The findings from a phase 3 clinical trial for a potential treatment called cendakimab were recently released at two medical conferences. Cendakimab is a biologic medicine that targets a protein called interleukin 13. This specific protein is a key mediator of type 2 inflammation and contributes to eosinophil recruitment, epithelial barrier dysfunction, and fibrosis (scarring).

The findings showed that cendakimab reduced symptoms and inflammation in the esophagus for adults and teens with eosinophilic esophagitis (EoE).

Treatment with cendakimab also improved key endoscopic and histologic features, even in those who did not have success with steroid treatment, or an intolerance to steroids.

These results were presented at the United European Gastroenterology (UEG) Week 2024 in October and additionally showed cendakimab to be generally safe and well tolerated through 24 weeks of treatment.

Additional findings from the phase 3 study for cendakimab were also presented in October at the 2024 annual meeting of the American College of Gastroenterology. The findings confirm cendakimab’s efficacy (symptom & inflammation reduction), safety & tolerability through 48 weeks of treatment

Cendakimab is being developed by Bristol-Myers Squibb.

 

APFED Welcomes Deborah Bruner to its Board of Directors

Press Releases

For immediate release

APFED Welcomes Deborah Bruner to its Board of Directors
Long-time Advocate Joins Board of Eosinophil-Associated Diseases Nonprofit

ATLANTA, GA, October 2024—The Board of Directors of the American Partnership for Eosinophilic Disorders (APFED) announces the appointment of new board secretary Deborah Bruner, MT, MBA. Mrs. Bruner will play a key part in organizing communications among APFED’s board, shaping APFED’s strategic initiatives, and representing APFED and the patient voice as we work together with the Consortium of Eosinophilic Gastrointestinal Disease Researchers (rdcrn.org/cegir) to advance these diseases.

Mrs. Bruner has had a successful career spanning nearly 40 years. An accomplished leader in the pharmaceutical industry with diverse background in clinical, regulatory, safety and product development, she has been recognized for cultural and global insight, analytical skills, and effective team-building.

Mrs. Bruner also has first-hand experience with eosinophil-associated disease, having lived a number of years with eosinophilic esophagitis and eosinophilic asthma. She has publicly shared her experiences with these conditions to patients, families, clinicians and researchers to foster a better understanding of the impacts.

“As a new member of APFED’s board, I am truly excited to contribute to the organization’s mission. I look forward to working collaboratively with my fellow board members to drive innovation, make strategic decisions, and support the organization’s growth. Together, I believe we can make a meaningful impact and achieve great things,” Mrs. Bruner shares.

“We are excited to welcome Deb Bruner to our Board of Directors,” said APFED President Dr. Wendy Book. “Her extensive experience and visionary leadership will be invaluable as we continue to grow, expand, and provide impactful programs and services designed to help people who live with eosinophil-associated disease.”

About APFED
Founded in 2001, the American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED’s mission is to passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy.
www.apfed.org

 

 

 

2024 Annual Scientific Meeting of the American College of Allergy, Asthma & Immunology

APFED Blog, Research, What's New

The 2024 Annual Scientific Meeting of the American College of Allergy, Asthma & Immunology (ACAAI) was held Oct. 24-28 in Boston. The ACAAI is a professional medical organization of more than 6,000 allergists-immunologists and allied health professionals.

APFED has a booth in the exhibit hall to share resources and patient education about eosinophil-associated disease with attendees.

We were excited to see a number of sessions for eosinophil-associated disease on the meeting’s agenda this year, including a Friday morning panel that provided attendees with updates in EoE and a review of guidelines for diagnosis and treatment, and talks about ongoing EoE management and monitoring, risk factors, and new treatment options.

There were also opportunities to learn about eosinophilic inflammation, and a number of research posters that were presented on topics such as EoE, eosinophilic gastritis, hypereosinophilic syndrome, eosinophilic asthma, and EGPA.

Several oral abstracts were presented and Dr. Krishan Chhiba, MD, PhD from Northwestern University Feinberg School of Medicine won the Clemens von Pirquet Abstract Award for the oral research abstract describing Transcriptomic Responses to Dietary Elimination in Eosinophilic Esophagitis (EoE) Across Adult and Pediatric Populations. This study is the first to compare gene activity (using RNA sequencing) in children and adults with EoE who responded favorably to diet elimination. The researchers found unique gene expression patterns specific to adults with EoE, as well as a “Diet Response score” that stays consistent regardless of age. These discoveries could help doctors predict how well individual EoE patients might respond to diet therapy, making treatment more personalized and potentially more effective.

Research highlights from other oral abstracts are as follows:

  • “Risk of developing eosinophilic esophagitis with preexisting asthma, allergic rhinitis, atopic dermatitis, or food allergy” showed that all atopic risk factors studied as part of this research raised the risk of developing EoE, with food allergies showing the highest risk.
  • “Efficacy of benralizumab and mepolizumab on asthma outcomes in patients with eosinophilic granulomatosis with polyangiitis” showcased data showing that asthma-related outcomes in patients with EGPA improved with benralizumab and mepolizumab regardless of baseline dose inhaled corticosteroid.
  • A number of oral abstracts focused on dupilumab for EoE. One highlighted research showing efficacy of dupilumab in children with EoE with and without atopic comorbidities. Another described how this drug helps improve health measures in people with EoE and affects various immune cells, including eosinophils to restore their development and function.
  • The findings of the abstract entitled, “Effect of budesonide oral suspension on dysphagia severity outcomes in patients with eosinophilic esophagitis” suggest that BOS improves dysphagia severity as early as week 4 of treatment, and another entitled, “Effect of corticosteroid use on outcomes in patients with eosinophilic esophagitis receiving budesonide oral suspension” found the medication to be efficacious over 12 weeks versus placebo, irrespective of prior corticosteroid use for EoE.
  • An abstract describing one center’s case series of eosinophilic fasciitis in pediatric patients found via ICD10 codes that APFED advocated to have established, and from 2000 to 2024 and a total of 11 cases of EF were diagnosed in pediatric patients this study provides valuable insight into the varying presenting symptoms, diagnostic findings, and treatment responses that can be seen in EF in the pediatric population.
  • An abstract described how mepolizumab treatment allowed patients with HES and EGPA to reduce their long-term use of oral steroids and improved symptoms in affected organs, showing benefits beyond just needing less medication.

 

To learn more about the ACAAI and its annual meeting this year, or to browse the program, oral abstract summaries, and eposters, visit https://annualmeeting.acaai.org/2024/index.cfm.