Lack of timely follow-up care common among patients with eosinophilic esophagitis
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Key takeaways:
- Rates of nonadherence were greater among patients who did not participate in the survey.
- Results suggest that some patients may adapt to mild to moderate disease.
Adults with eosinophilic esophagitis often failed to return to their specialist for timely follow-up care, according to a letter published in Annals of Allergy, Asthma & Immunology.
But the reasons why patients fail to keep these appointments need additional study, Mark Holbreich, MD, of Allergy and Asthma Consultants in Indianapolis, and Evan S. Dellon, MD, MPH, of University of North Carolina School of Medicine, wrote.
As an allergist in private practice, Holbreich told Healio, he has a long-standing interest in EoE and developed an EoE referral center for gastroenterologists in his community.
“I saw about a hundred new adult patients with EoE per year,” he said. “As I approached retirement, I decided to send a questionnaire to all patients seen with EoE over a 4-year period. I wanted to collect as much data about them as possible.”
The retrospective cohort study surveyed 100 patients (62% male; 100% white) aged 16 years and older (mean age, 45 years; range, 16-75 years) who had an initial consultation for EoE at a solo community practice.
“We sent a questionnaire asking many questions about their EoE, including their current status in terms of follow-up,” he said. “We used our electronic medical scheduling software to track patients who did not return a questionnaire.”
The study also included the 238 patients (72% male; mean age, 46 years) who had an initial consultation for EoE at the practice but did not respond to the survey.
“Essentially, it was a real-world look at EoE, a known chronic disease,” Holbreich said.
Among the survey respondents, 67% had allergic rhinitis, 16% had asthma that required a daily inhaled corticosteroid, 20% had IgE-mediated food allergies, and 32% had pollen food allergy syndrome or food-induced immediate response in the esophagus.
Symptoms included current difficulty swallowing (32%), a history of compensatory eating behaviors (89%) and previous anxiety around eating (41%).
“We believe that if the disease goes untreated, then scarring in the esophagus will gradually increase to the point of narrowing the esophagus to such an extent that swallowing becomes very difficult,” Holbreich said.
Also, 47% used monotherapy such as swallowed steroids, a proton-pump inhibitor or diet; 35% used combination therapy; 18% had no current therapy; 57% had dilations; and 38% had more than one dilation.
The questionnaire respondents included 9% who failed to return for a follow-up appointment after their initial consultation, 56% who returned within a year, and 35% who followed up but did so after the recommended time frame of 1 year.
The patients who did not complete the survey included 3% who returned within a year, 47% who followed up more than a year later, and 50% who did not return at all.
“We were surprised to see so many patients who came in just once and never returned as well as many patients who did not maintain the every 6- to 12-month appointment that we recommend,” Holbreich said.
The authors noted that 51% of the patients who participated in a follow-up appointment did so via telehealth, and 100% of them said they were satisfied with the experience.
Based on these findings, the authors characterized adherence to recommended medical treatment plans as poor among patients with EoE, but because the study was retrospective, they did not have any explanation for why patients failed to follow up with care.
Many of these patients would have progressive dysphagia, the researchers wrote, although there may be an inflammatory phenotype that does not progress. Patients also may adapt to mild or moderate disease, or they may have responded to proton-pump inhibitor therapy and continued to self-medicate, the researchers continued.
With 32% of the patients who responded to the questionnaire and listed current therapy reporting ongoing dysphagia, the authors said that many patients may use coping skills to lead an otherwise normal life and “get by” when it comes to their eating.
Further, the authors wrote, these findings lead to additional questions, such as whether there is a “mild” EoE phenotype that does not progress, whether patients “live” with dysphagia by adapting eating behaviors and if symptoms may resolve over time.
Overall, the authors wrote, these results indicate that patients with EoE often fail to adhere to medical plans, just like patients with other chronic diseases. But Holbreich also said that improvement is possible.
“Doctors who treat EoE as well as other chronic medical conditions need to improve communication through shared decision-making,” he said, adding that shared decision-making has been shown to improve adherence.
The authors plan on continuing their research with Joy Weiling Chang, MD, MS, clinical instructor in the division of gastroenterology at University of Michigan, hoping to learn more about nonadherent patients and the reasons behind their behavior.
“Maybe the disease can be mild and not progress as we expect. Patients may also get by with no medications by adaptive eating behaviors,” Holbreich said. “So, we are very interested in learning more about adaptive eating behaviors in EoE patients.”
For more information:
Mark Holbreich, MD, can be reached at mholbreich@comcast.net.
Perspective
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Amanda Michaud, DMSc, PA-C, AE-C
Holbreich and Dellon’s retrospective study examining medication adherence among adults with EoE shows overall poor compliance with medication adherence and long-term follow-up visits. These findings are significant for several reasons.
First and foremost, as EoE is a chronic inflammatory condition, medication nonadherence can lead to disease progression, persistent symptoms and complications such as esophageal strictures, ring formation or food bolus impactions. Medication nonadherence can also result in reduced quality of life and suboptimal nutritional status.
Unfortunately, these findings are not surprising, as there are significant burdens to medication adherence for our patients with EoE, including the complexity of medication regimens, limited FDA-approved therapies for EoE, dietary restrictions, poor understanding of underlying disease pathology, side effects or fear of long-term medication use, cost of medications and health care utilization.
From my clinical experience, because many patients with EoE have fluctuating symptoms and asymptomatic periods without a solid understanding of the underlying disease pathology, they may not realize the importance of taking their prescribed regimen long term.
Clinicians who manage patients with EoE can help improve adherence and remove barriers to treatment by having open discussion with our patients and shared decision-making. Educating patients on their disease state and complications of untreated EoE in a way they can understand is prudent. We can take this a step further by discussing how the different medications actually work to improve inflammation and reduce symptoms.
In my practice, I strive to have an open discussion about medication side effects. Anticipating patient or family questions or concerns surrounding medications is also important. I have also found that simplifying medication regimens improves adherence. Finally, tailoring treatment regimens that are evidence based by aligning with a patient’s personal values will improve adherence. From a long-term follow-up perspective, offering the option of telehealth visits can improve the adherence with follow-up appointments.
On another note, the study did not include any patients with EoE on dupilumab (Dupixent; Sanofi Genzyme/Regeneron). I would be interested to see what the adherence and follow-up data looks like in patients on dupilumab. Anecdotally, patients on dupilumab for EoE seem to have higher rates of medication adherence and compliance with long-term follow-up visits.
Of course, there are barriers with dupilumab as well, but there may be improved adherence with a once-weekly injection vs. daily or twice daily medication. Considering using dupilumab for appropriate patients may help remove some barriers to adherence and treat EoE long term.
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