Clinical Context

Eosinophilic esophagitis has a prevalence of about 34 cases per 100,000 population, and despite being a rare disease condition, it is a leading cause of solid food bolus impaction. Eosinophilic esophagitis is also associated with a significant delay in diagnosis in many cases, and the authors of the current study provide some reasoning for why this might be the case.

Although dysphagia with solid foods is the most common symptom of eosinophilic esophagitis among adolescents and adults, younger children may also have regurgitations, emesis, abdominal pain, and failure to thrive. Although endoscopy with biopsy is the most common means to diagnose eosinophilic esophagitis, the initial endoscopy among patients may appear as quite normal. As the disease progresses, exudates, rings, edema, furrows, and strictures become more evident.

Unfortunately, every year of diagnostic delay is associated with a 5% increase in the risk for fibrostenotic changes in the esophagus. The current study evaluates the prevalence and characteristics of diagnostic delay of eosinophilic esophagitis in Switzerland.

Study Synopsis and Perspective

It takes at least 10 years for one third of patients with eosinophilic esophagitis to receive a diagnosis and a median of 4 years for patients overall to get their diagnosis--numbers that have not budged in three decades, according to a study published online in the American Journal of Gastroenterology.^[1]

This delay has persisted despite more than 2000 publications on the condition since 2014 and a variety of educational events about it, report Fritz R. Murray, MD, from the Department of Gastroenterology and Hepatology at the University Hospital Zurich in Switzerland, and colleagues.

"Bearing in mind that [eosinophilic esophagitis] is a chronic and progressive disease, that, if left untreated, leads to esophageal structuring ultimately causing food impaction, the results of our analysis are a cause for concern," the authors write.

"Substantial efforts are warranted to increase awareness for [eosinophilic esophagitis] and its hallmark symptom, solid-food dysphagia, as an age-independent red-flag symptom...to lower risk of long-term complications," they added.

Assessing the Evolution of Diagnostic Delay

The researchers retrospectively analyzed prospectively collected data from 1152 patients in a Swiss database. The patients (74% male; median age, 38 years) had all been diagnosed with eosinophilic esophagitis according to established criteria. The authors calculated the diagnostic delay from 1989 to 2021 and at three key points:

• 1993: first description of the condition
• 2007: first consensus recommendations
• 2011: updated consensus recommendations

The median diagnostic delay during the three decades studied was 4 years overall and was at least 10 years in nearly one third (32%) of the population. Diagnostic delay did not significantly change throughout the study period, year by year, or at or after any of the milestones included in the analysis, retaining the minimum 10-year delay in about one third of all patients.

The median age at symptom onset was 30 years, with 51% of patients first experiencing symptoms between 10 and 30 years of age.

"Age at diagnosis showed a normal distribution with its peak between 30 and 40 years with 25% of the study population being diagnosed with [eosinophilic esophagitis] during that period," the authors report.

Although diagnostic delay did not differ between sexes, the length of time before diagnosis did vary on the basis of the patient's age at diagnosis, increasing from a median of 0 years for those aged 10 years or younger to 5 years for those aged 31 to 40 years.

"When examining variation in [diagnostic delay] based on age at symptom onset, we observed an inverse association of age at symptom onset and [diagnostic delay], with longest [diagnostic delay] observed in children," they write.

Diagnostic delay was longer in those who needed an endoscopic disimpaction (a median of 6 years) before being diagnosed compared with those who did not require this procedure, who had a median delay of 3 years. Nearly one third (31%) of participants had at least one food impaction requiring endoscopic removal before receiving their diagnosis.

Three in four participants (74%) had a confirmed atopic condition besides eosinophilic esophagitis, with 13% not having an atopic comorbidity and another 13% lacking information on whether they did or not. Those with atopic conditions were younger (median age, 29 years) when symptoms began than were those without atopic conditions (median age, 34 years).

Similarly, those with atopic conditions were younger (median age, 38 years) than those without these conditions (median age, 41 years) at the time of diagnosis. Diagnostic delay was a median 2 years shorter (3 vs 5 years) for patients with concomitant atopic conditions.

"Importantly, the length of [diagnosis delay] (untreated disease) directly correlates with the occurrence of esophageal strictures," the authors write, citing previous research finding that the prevalence of strictures rose from 17% in patients with a delay of up to 2 years to 71% in patients with a delay of more than 20 years.

"Esophageal strictures were present in around 38% of patients with a delay between 8-11 years" in that study, "a delay that is prevalent in about one third of our study population," the authors write.^[2] "However, even a median delay of 4 years resulted in strictures in around 31% of untreated patients."

Other research has found that the risk for esophageal strictures increases an estimated 9% each year that eosinophilic esophagitis goes untreated.^[3]

The authors suggest that patients' denying symptoms or attempting to address their symptoms with changes in diet or eating behavior may be one reason for the long diagnostic delay, given other findings showing that patient-dependent delay was 18 months compared with 6 months for physician-dependent delay. Although the authors did not have the information in their data set to assess patient- vs physician-dependent delay, a subgroup analysis revealed that patients and nongastroenterologist doctors combined made up the largest proportion of diagnosis delay.

"This fact indicates that future efforts should target the general population, and potentially primary physicians, to strengthen the awareness for [eosinophilic esophagitis] as a potential underlying condition in patients with dysphagia," the authors write. Members of the healthcare team, such as nurses, primary care nurse practitioners and physician assistants, also play a role in the early detection and diagnosis of EoE.

"[A] change in eating behavior, especially in cases with prolonged chewing, slow swallowing or even the necessity of drinking fluids after swallowing of solid food, should raise suspicion also in the general population," they added.

Dr Murray received travel support from Janssen, and nine of the other 11 authors reported consulting, speaking, research and/or travel fees from 23 various pharmaceutical and related companies.

Am J Gastroenterol. Published online August 12, 2022.

Clinical Implications

• Although dysphagia with solid foods is the most common symptom of eosinophilic esophagitis among adolescents and adults, younger children may also have regurgitation, emesis, abdominal pain, and failure to thrive. Endoscopy with biopsy is the most common means to diagnose eosinophilic esophagitis, but the initial endoscopy among these patients may appear as quite normal. As the disease progresses, exudates, rings, edema, furrows, and strictures become more evident. Unfortunately, every year of diagnostic delay is associated with a 5% increase in the risk for fibrostenotic changes in the esophagus.
• In the current study, the median diagnostic delay was 4 years, with little change during the past several decades. Diagnostic delay was similar among women and men, but it tended to increase with age.
• Implications for the healthcare team: Members of the healthcare team should communicate with patients the importance of reporting any abnormal esophageal symptoms as soon as possible in an effort to decrease diagnostic delays.

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