When dietary modification turns problematic in patients with esophageal conditions.

BACKGROUND: Patients with chronic illness affecting the esophagus often modify their eating habits to manage symptoms. Although this begins as a protective strategy, anxiety around eating can become problematic, and lead to poor outcomes. We administered a survey to examine the factors associated with problematic eating behaviors in patients who have reflux and difficulty swallowing (esophageal dysphagia). METHODS: In total, 277 adult patients aged above 18 diagnosed with achalasia, eosinophilic esophagitis, and gastroesophageal reflux completed an online survey: (1) demographic and disease information; (2) reflux and dysphagia severity (3) eating behaviors, as measured by a study-specific, modified version of the Eating Disorder Questionnaire (EDE-Q) for patients with esophageal conditions; and (4) Food related quality of life (FRQOL). Descriptive statistics, one-way ANOVA, and Pearson's correlations evaluated the sample data and a hierarchical linear regression evaluated predictors of problematic eating behaviors. KEY RESULTS: Problematic eating behaviors were associated with reflux severity, dysphagia severity, symptom anxiety, and hypervigilance, and negatively associated with FRQOL. While reflux and dysphagia severity predicted greater problematic eating, symptom anxiety explained more of these behaviors. Although hypervigilance and anxiety also predicted poorer FRQOL, problematic eating was the largest predictor. CONCLUSION & INFERENCES: Problematic eating behaviors are associated with increased symptom severity and symptom anxiety, and diminished FRQoL. Symptom anxiety, rather than symptom severity, appears to be a driving factor in problematic eating behaviors. Interventions aimed at diminishing symptom anxiety may be useful in reducing problematic eating behaviors in patients with gastrointestinal symptoms.

Development of a core outcome set for therapeutic studies in eosinophilic esophagitis (COREOS).

BACKGROUND: End points used to determine treatment efficacy in eosinophilic esophagitis (EoE) have evolved over time. With multiple novel therapies in development for EoE, harmonization of outcomes measures will facilitate evidence synthesis and appraisal when comparing different treatments. OBJECTIVE: We sought to develop a core outcome set (COS) for controlled and observational studies of pharmacologic and diet interventions in adult and pediatric patients with EoE. METHODS: Candidate outcomes were generated from systematic literature reviews and patient engagement interviews and surveys. Consensus was established using an iterative Delphi process, with items voted on using a 9-point Likert scale and with feedback from other participants to allow score refinement. Consensus meetings were held to ratify the outcome domains of importance and the core outcome measures. Stakeholders were recruited internationally and included adult and pediatric gastroenterologists, allergists, dieticians, pathologists, psychologists, researchers, and methodologists. RESULTS: The COS consists of 4 outcome domains for controlled and observational studies: histopathology, endoscopy, patient-reported symptoms, and EoE-specific quality of life. A total of 69 stakeholders (response rate 95.8%) prioritized 42 outcomes in a 2-round Delphi process, and the final ratification meeting generated consensus on 33 outcome measures. These included measurement of the peak eosinophil count, Eosinophilic Esophagitis Histology Scoring System, Eosinophilic Esophagitis Endoscopic Reference Score, and patient-reported measures of dysphagia and quality of life. CONCLUSIONS: This interdisciplinary collaboration involving global stakeholders has produced a COS that can be applied to adult and pediatric studies of pharmacologic and diet therapies for EoE and will facilitate meaningful treatment comparisons and improve the quality of data synthesis.

Reliability and Validity Study of Turkish Version of Pediatric Eosinophilic Esophagitis Symptom Scores® (Tr-PEESS v2.0) Led to Development of a New Pediatric Eosinophilic Esophagitis Scale: GaziESAS.

BACKGROUND/AIMS: There has been no valid and reliable Turkish scale that measures symptoms in children with eosinohilic esophagitis (EoE). The aim of the study is test the validity and reliability of Turkish version of Pediatric Eosinophilic Esophagitis Symptom Scores® (Tr-PEESS v2.0) Materials and Methods: Relevant forms of Tr-PEESS v2.0 were applied to 2-18 years old children with EoE and to their parents. KINDL QoL patient and parent questionnaires and GaziESAS scale which was developed in this study were used to test convergent validity of Tr-PEESS v2.0. Discriminant validity was evaluated among three EoE treatment groups: under treatment, off treatment due to remission and uncompliant with treatment. Reliability was evaluated by internal consistency, test-retest reliability, and item analysis. RESULTS: Fiftytwo children/teens (mean age 130.2±60.3 months) and 84 parents were interviewed twice one week apart. Mean duration of EoE was 47.2±35.6 months. Tr-PEESS v2.0 reports correlated with GaziESAS (range,0.361-0.855) and KINDL QoL questionnaires (range,-0.316-0.413). Parent report of Tr-PESS v2.0 discriminated children uncompliant with treatment from the ones off treatment and undertreatment. Cronbach's α values and intraclass correlation coeffcients (ICC) values of Tr-PEESS v2.0 ranged from 0.614 to 0. 895 and 0.646 to 0.910, respectively. CONCLUSION: Tr-PEESS v2.0 is a valid and reliable tool to use in Turkish children. GaziESAS is a new parent-proxy pediatric EoE scale with additional adaptive behaviour domain that passed scale developmental stages successfully for Turkish children with EoE.

Esophageal Hypervigilance and Symptom-Specific Anxiety in Patients with Eosinophilic Esophagitis.

BACKGROUND & AIMS: Patient symptom reporting often does not correlate with the pathophysiological markers of esophageal disease, including eosinophilic esophagitis (EoE). Esophageal hypervigilance and symptom-specific anxiety are emerging as important considerations in understanding symptom reporting. As such, we aimed to conduct the first study of these constructs in EoE. METHODS: A retrospective review of an EoE patient registry was conducted and included eosinophils per high power field (from esophagogastroduodenoscopy biopsy: proximal, distal), endoscopic reference score, distal distensibility plateau (functional luminal imaging probe), Brief Esophageal Dysphagia Questionnaire, Visual Dysphagia Question of EoE Activity Index, Northwestern Esophageal Quality of Life scale, and the Esophageal Hypervigilance and Anxiety Scale. Correlational and regression analyses evaluated relationships of hypervigilance and anxiety with Brief Esophageal Dysphagia Questionnaire, Visual Dysphagia Question of EoE Activity Index, and Northwestern Esophageal Quality of Life scale when controlling for histology and endoscopic severity. RESULTS: One hundred and three patients had complete data, 69.9% were male, and the mean (SD) age was 40.66 (13.85) years. Forty-one percent had elevated dysphagia and 46% had elevated hypervigilance and anxiety. Esophageal symptom-specific anxiety emerged as the most important predictor of Brief Esophageal Dysphagia Questionnaire severity (44.8% of the variance), Visual Dysphagia Question of EoE Activity Index severity (26%), and poor health-related quality of life (HRQoL) (55.3%). Hypervigilance was also important, but to a lesser extent. Pathophysiological variables did not significantly predict symptoms or HRQoL. Recent food impaction can predict symptom-specific anxiety and proton pump inhibitor use can reduce hypervigilance. CONCLUSIONS: Hypervigilance and symptom-specific anxiety are important for our understanding of self-reported patient outcomes in EoE. These processes outweigh endoscopic and histologic markers of EoE disease activity across dysphagia, difficulty eating, and HRQoL. Clinicians should assess hypervigilance and anxiety, especially in patients with refractory symptoms and poor HRQoL.

Medication Adherence Aligns with Age and a Behavioral Checklist but Not Symptoms or Quality of Life for Patients with Eosinophilic Esophagitis.

OBJECTIVE: To measure adherence rates to swallowed topical steroids in children with eosinophilic esophagitis (EoE), describe factors related to adherence, and determine the association between adherence, symptoms, perceived disease severity, and quality of life in children with EoE. STUDY DESIGN: Subjects in this cross-sectional study of 117 children between 5 and 18 years old with EoE completed the Pediatric Eosinophilic Esophagitis Symptoms Score V2.0 (PEESS), Pediatric Quality of Life Inventory Eosinophilic Esophagitis Module (PedsQL EoE), a Medication-Taking Checklist (MTC), and a demographics questionnaire. Adherence rate was calculated based on reported number of missed doses/prescribed doses in the last week. Parent-reported measures were used for children aged 5-12 years and self-report was used for children aged 13-18 years. RESULTS: Adolescents had lower adherence rates than younger children (76.2 ± 24.5% vs 88.6 ± 16.7%, P = .002). Adherence rates were not associated with disease history, PEESS, or PedsQL EoE scores but instead correlated with MTC scores (Pearson r of 0.65, P < .001 for child-report and Pearson r of 0.74, P < .001 for parent-report). Symptomatology was associated with worse quality of life (PEESS Frequency: r = -0.7, P < .001; PEESS Severity: r = -0.71, P < .001 for children 5-12 years old; PEESS Frequency: r = -0.61, P < .001; PEESS Severity: r = -.5, P < .001 for adolescents). CONCLUSIONS: Unrelated to their clinical history, demographic factors, symptoms, and quality of life, adolescents with EoE have lower medication adherence rates. The MTC may serve as a clinical tool to discuss adherence and provide targeted educational counseling regarding adherence interventions.

Generic Measures of Quality of Life Are Not Correlated with Disease Activity in Eosinophilic Esophagitis.

BACKGROUND: The relationship between histologic disease activity in eosinophilic esophagitis (EoE) and generic measures of quality of life (QoL) is unclear. AIMS: To determine differences in QoL in adults with EoE based on histologic activity and assess changes in QoL over time. METHODS: We performed an analysis of prospectively collected data from patients in the University of North Carolina EoE Registry. Patients were categorized with histologically active (≥ 15 eosinophils per high-power field [eos/hpf]) or inactive (< 15 eos/hpf) disease. Dysphagia severity was measured with a Likert scale. QoL was measured with 36-Item Short Form (SF-36), compared between active and inactive groups, and assessed longitudinally. RESULTS: Of 147 EoE cases, those with inactive disease (n = 56) reported less dysphagia severity (3.2 vs. 1.9; p = 0.003) and had lower endoscopic severity (3.8 vs. 1.0; p < 0.001) than those with active disease (n = 91). While SF-36 scores did not differ between active and inactive status, lower mental component scores (MCS) were seen in patients treated with empiric dietary elimination (44.9 vs. 50.8; p = 0.005). Dysphagia severity was negatively correlated with both physical component score (PCS) (r = -0.33; p < 0.001) and MCS (r = -0.18; p = 0.03). Despite more cases achieving histologic response over time, SF-36 scores did not improve on either raw or adjusted analyses. CONCLUSION: QoL measured by SF-36 in EoE was similar regardless of histologic disease activity and was in the range of population averages. General QoL metrics like the SF-36 do not appear to have substantial utility in EoE.

Motivations, Barriers, and Outcomes of Patient-Reported Shared Decision Making in Eosinophilic Esophagitis.

BACKGROUND: Little is known about patient choice in treatment of eosinophilic esophagitis (EoE). AIM: Determine motivators and barriers to using common EoE therapies and describe patient-reported shared decision making (SDM) and satisfaction with treatment. METHODS: We developed and administered a Web-based survey on factors influencing EoE treatment choice, SDM, and satisfaction. Adults with EoE and adult caregivers of pediatric EoE patients were recruited via patient advocacy groups and at two centers. Descriptive statistics of multiple response questions and multivariable logistic regression were performed to identify predictors of SDM and satisfaction with treatment. RESULTS: A total of 243 adults (mean age 38.7 years) and 270 adult caregivers of children (mean age 9.5 years) completed the survey. Preventing worsening disease was the most common motivator to treat EoE. Barriers to topical steroids were potential side effects, cost, and preferring a medication-free approach. Inconvenience and quality of life were barriers to diet. Potential adverse events, discomfort, and cost were barriers to dilation. Nearly half (42%) of patients experienced low SDM, but those followed by gastroenterologists were more likely to experience greater SDM compared to non-specialists (OR 1.81; 95% CI 1.03-3.15). Patients receiving more SDM were more satisfied with treatment, regardless of provider or treatment type (OR 2.62, 95% CI 1.76-3.92). CONCLUSIONS: Patients with EoE pursue treatment mostly to prevent worsening disease. Common barriers to treatment are inconvenience and financial costs. SDM is practiced most by gastroenterologists, but nearly half of patients do not experience SDM, indicating a substantial area of need in EoE.

Mental distress among adult patients with eosinophilic esophagitis.

RATIONALE: Data on the prevalence of mental distress among adult eosinophilic esophagitis (EoE) patients are scarce. Also, a significant gap remains in the understanding of which determinants are related to significant psychological symptoms and whether distressed patients require and receive mental care. METHODS: Adult EoE patients were invited to complete standardized measures on anxiety/depressive symptoms (HADS) and general psychopathology (SCL-90-R). All scores were compared to general population norms. Socio-demographic and clinical factors were assessed. RESULTS: In total, 147 adult EoE patients (61% males, age 43 (IQR 29-52) years were included (response rate 71%). No difference with general population values was found for total anxiety and depressive symptoms (7.8 ± 6.6 vs. 8.4 ± 6.3; p = 0.31). A total of 38/147(26%) patients reported high levels of anxiety and/or depressive symptoms (HADS-A ≥ 8: 35/147(24%) and HADS-D ≥ 8: 14/147(10%)), indicative of a possible psychiatric disorder. In a multivariate analysis, age between 18-35 years was independently associated with high levels of anxiety (HADS-A ≥ 8) (OR 3.0, 95% CI 1.3-6.9; p = 0.01). The SCL-90-R Global Severity Index (GSI) was significantly higher compared to the general population (p < 0.001). Significant signs of general mental distress (GSI ≥ 80th percentile) were observed in 51(36%) EoE patients, of which 29(57%) patients denied having any mental problems and only 8(16%) patients received mental care. CONCLUSION: A considerable proportion of adult EoE patients suffers from mental distress, with a 3-fold risk of significant anxiety in those patients younger than 35 years. Therefore, population-based studies are required and a proactive approach in the screening for and treatment of these psychological symptoms in EoE practice seems essential.

Behavioral issues and quality of life in children with eosinophilic esophagitis.

Eosinophilic esophagitis (EoE) is a chronic disease characterized by symptoms related to esophageal dysfunction and eosinophil-predominant inflammation (≥15 eosinophils/high power field). In the last ten years, several epidemiological studies showed a significant increase in the incidence and prevalence of EoE, especially in children in Western Countries. Although EoE often presents with gastrointestinal symptoms, adults and children may develop extraintestinal symptoms and behavioral issues. Also, the chronic nature of the disease, long-term therapies, and strict follow-up may impair the quality of life of patients and their family. This review summarizes current knowledge on the behavioral and psychosocial issues and quality of life of children and adolescents with EoE and their caregivers.

Adaptación transcultural del cuestionario Pediatric Eosinophilic Esophagitis Quality of Life Module / Transcultural adaptation of the Pediatric Eosinophilic Esophagitis Quality of Life Module Questionnaire

INTRODUCCIÓN: La esofagitis eosinofílica (EoE) afecta a la calidad de vida (CVRS) de los pacientes y sus familias. Los cuestionarios de calidad de vida específicos permiten evaluar la CVRS para esa enfermedad concreta y realizar cambios diagnósticos o terapéuticos para mejorarla. OBJETIVO: Realizar la adaptación transcultural de la versión inglesa original del cuestionario Pediatric Eosinophilic Esophagitis Quality of Life Module (Peds QL EoE Module) a lengua española. MÉTODOS: El cuestionario Peds QL EoE Module consta de 3 versiones para padres y niños de 5-7, 8-12 y 13-18 años y una para padres de niños de 2-4 años. Se siguió la metodología internacionalmente consensuada, realizando 2 traducciones independientes de la versión original inglesa al español, versión española de consenso, traducción inversa al inglés, versión final preliminar, entrevista cognitiva a 5 padres y niños de cada grupo de edad para evaluar la comprensión del cuestionario y crear, una vez resueltas las dificultades encontradas, la versión final. RESULTADOS: En la entrevista cognitiva respondieron la totalidad de las preguntas 15 niños y 20 padres; el tiempo empleado en contestar el cuestionario les pareció adecuado y el test, de fácil comprensión. El grupo de niños de 5 a 7 años fue el que más tiempo tardó en responder y el que presentó mayor dificultad en su comprensión. La satisfacción global fue alta y la encuesta les pareció una herramienta útil. CONCLUSIONES: La adaptación transcultural al español del cuestionario Peds QL EoE Module permitirá, tras su validación, su aplicación para el estudio de la CVRS de los niños españoles con EoE

INTRODUCTION: Eosinophilic oesophagitis (EoE) affects the quality of life (QoL) of the patients and their families. Specific quality of life questionnaires help to evaluate the QoL for this particular disease, as well as to make diagnostic or therapeutic changes in order to improve it. OBJECTIVE: To make a transcultural adaptation of the original English version of the Pediatric Eosinophilic Esophagitis Quality of Life Module (Peds QL EoE Module) into the Spanish language. METHODS: The PedsQL EoE Module questionnaire consists of 3 versions for parents and children from 5-7, 8-12, and 13-18 years, and one for parents of children from 2-4 years. It follows the international consensus methodology, consisting of performing independent translations of the original English version to Spanish, a consensus Spanish version, a back-translation into English, preliminary final version, as well as a cognitive interview with 5 parents and children of each age group in order to evaluate the comprehension of the questionnaire, and once the difficulties found are resolved, the final version. RESULTS: In the cognitive interview, 15 children and 20 parents responded to all the questions. The time taken to complete the questionnaire seemed adequate to them, and the comprehension test was easy. The 5 to 7 years children group took the longest in responding and that had more difficulty in understanding it. The overall satisfaction was high, and the questionnaire seemed to be a useful tool for them. CONCLUSIONS: After it validation, the transcultural adaptation to Spanish of the Peds QL EoE Module questionnaire can be applied in order to study the QoL of Spanish children with EoE

[Transcultural adaptation of the Pediatric Eosinophilic Esophagitis Quality of Life Module Questionnaire]. / Adaptación transcultural del cuestionario Pediatric Eosinophilic Esophagitis Quality of Life Module.

INTRODUCTION: Eosinophilic oesophagitis (EoE) affects the quality of life (QoL) of the patients and their families. Specific quality of life questionnaires help to evaluate the QoL for this particular disease, as well as to make diagnostic or therapeutic changes in order to improve it. OBJECTIVE: To make a transcultural adaptation of the original English version of the Pediatric Eosinophilic Esophagitis Quality of Life Module (Peds QL EoE Module) into the Spanish language. METHODS: The PedsQL EoE Module questionnaire consists of 3 versions for parents and children from 5-7, 8-12, and 13-18 years, and one for parents of children from 2-4 years. It follows the international consensus methodology, consisting of performing independent translations of the original English version to Spanish, a consensus Spanish version, a back-translation into English, preliminary final version, as well as a cognitive interview with 5 parents and children of each age group in order to evaluate the comprehension of the questionnaire, and once the difficulties found are resolved, the final version. RESULTS: In the cognitive interview, 15 children and 20 parents responded to all the questions. The time taken to complete the questionnaire seemed adequate to them, and the comprehension test was easy. The 5 to 7 years children group took the longest in responding and that had more difficulty in understanding it. The overall satisfaction was high, and the questionnaire seemed to be a useful tool for them. CONCLUSIONS: After it validation, the transcultural adaptation to Spanish of the Peds QL EoE Module questionnaire can be applied in order to study the QoL of Spanish children with EoE.

Avoidant/Restrictive Food Intake Disorder in Diet-treated Children With Eosinophilic Esophagitis.

Eosinophilic esophagitis (EoE) is an inflammatory condition of the esophagus with rising incidence in children. Owed to potential adverse effects and high costs of EoE medications, strict elimination diets are often employed as a mainstay of long-term EoE therapy in children. Currently, there are no effective tests to pinpoint food protein triggers in children with EoE. Therefore, EoE elimination diets are often broad (including milk, soy, wheat, egg, fish/shellfish, and nuts) and can greatly alter a child's baseline eating habits. Herein, we describe 2 cases of avoidant/restrictive food intake disorder (ARFID) in children with remitted EoE maintained on an elimination diet. We also present comorbidity data on ARFID and diet-treated EoE from our pediatric EoE clinic. This is the first report of disordered eating associated with EoE therapy. As EoE is becoming more common, close monitoring of intake and growth in patients treated with elimination diets will be key.

A Comparative Analysis of Eating Behavior of School-Aged Children with Eosinophilic Esophagitis and Their Caregivers' Quality of Life: Perspectives of Caregivers.

Eosinophilic esophagitis (EoE) can affect eating behavior in infants and children and this may lead to stressful interactions with their caregivers and potentially impact their caregivers' quality of life. Clinical evaluation of eating behaviors can be time consuming and burdensome. Caregivers can provide a comprehensive assessment of their child's eating behavior; however, this has not been well studied in children with EoE. In a case-control study, we used Child Eating Behavior Questionnaire (CEBQ) to compare caregivers' perception of eating behaviors in children (ages 11 ± 4 years; Mean ± SD) with EoE (cEoE; N = 42) to that of non-EoE controls (cControls; N = 38), and Feeding/Swallowing Impact on Children's Caregivers Questionnaire (FS-IS) to examine the impact of EoE-related eating problems on their caregivers' quality of life. There were no differences between the cEoE and cControls perceptions of eating behaviors as assessed by CEBQ. In FS-IS, the cEoE indicated that they were worried about the way their child would breathe or if the child would choke while feeding (2.28 ± 0.16 vs. 1.25 ± 0.13; p < 0.001), and also indicated that it was hard for them to feed their child as it took a long time to prepare liquids and foods the "right" way (2.1 ± 0.20 vs. 1.17 ± 0.09; p < 0.001) when compared to cControls. Our results suggest that caregivers' perception of the eating behavior of school-aged children with and without EoE do not differ significantly, yet the perception of feeding/swallowing issues in children with EoE can negatively impact their caregivers' quality of life. Further research is needed to discern the eating behavior in children with EoE and its relationship with their caregivers' quality of life.

Measurement of Observed Eating Behaviors in Patients With Active and Inactive Eosinophilic Esophagitis.

Subjective measures of eating difficulties in eosinophilic esophagitis (EoE) such as the presence of dysphagia, food modifications, and prolonged eating times are well documented. Although it is assumed that these measures reflect adaptive measures for eating with EoE, this is not well studied. The aim of this study was to directly observe and measure eating behaviors in patients with EoE and assess the degree of correlation to subjective assessment and validated EoE scoring systems.

Adults with eosinophilic oesophagitis identify symptoms and quality of life as the most important outcomes.

BACKGROUND: Well informed patients who are in cohesive partnership with physicians and who have realistic expectations towards therapy are more likely to be adherent, which results in better disease control. AIM: To assess which therapy goals adults with eosinophilic oesophagitis consider relevant. METHODS: Following refinement during three focus groups, a study brochure and questionnaire were sent to 148 patients. Patients ranked the importance (five levels) of short-term (in the next 3 months) and long-term (≥1 year) treatment effect on symptoms, quality of life (QoL), histologically-detected inflammation and fibrosis, endoscopically-detected inflammation, and stricture formation as well as achieving histological remission while asymptomatic. Patients' characteristics associated with treatment goals were identified using logistic regression. RESULTS: Of 109 respondents (mean age 43 years), 85 were men. Over 90% chose symptoms and QoL improvement as important short- and long-term therapy goals. A greater proportion attributed more importance to long-term reduction in endoscopic (90% vs 73%, P < 0.001) and histological (81% vs 62%, P = 0.002) inflammation, and histologically-detected fibrosis (79% vs 64%, P = 0.018) when compared to short-term reduction in these features. Patients (88%) ranked achieving histological remission while being asymptomatic as important. Gender, therapy use, education level, QoL, symptom severity, and history of dilation were associated with patients' choice of treatment goals. CONCLUSIONS: Patients attributed most importance to improvement in symptoms and QoL. Reduction in biological activity was judged less important, but more relevant in the long- compared to the short-term.

Assessing Adherence and Barriers to Long-Term Elimination Diet Therapy in Adults with Eosinophilic Esophagitis.

BACKGROUND: The six-food elimination diet (SFED) is an effective treatment approach for eosinophilic esophagitis (EoE), but it can be challenging and affect patients' quality of life. AIM: Assess patients' long-term adherence to SFED and potential factors influencing adherence. METHODS: EoE patients were recruited online via multiple platforms. Patients were classified as reaching the maintenance stage if they responded to SFED and identified specific trigger foods by reintroduction. Maintenance stage patients were categorized into those actively following the elimination diet (ACTIVE) and those no longer on their prescribed diet (FORMER). Participants completed a study-specific questionnaire assessing patient experiences related to SFED use. RESULTS: Forty-two participants were identified as having reached the SFED's maintenance stage. 57% (24/42) of the maintenance stage patients were ACTIVE users. FORMER users rated the SFED's effectiveness at treating symptoms (5.45 ± 3.96, 10 max.) lower than ACTIVE users (8.29 ± 2.76, p = .02). A greater percentage of FORMER users (100%) agreed social situations create challenges in following the diet compared to ACTIVE users (67%, p < .05). Anxiety related to SFED was also higher among FORMER users (64%) compared to ACTIVE users (21%, p < .01). Both ACTIVE (95.8%) and FORMER (81.8%, NSS) users would recommend the elimination diet to other EoE patients. CONCLUSIONS: Understanding SFED adherence is multifactorial and complex. Factors influencing SFED adherence during long-term maintenance with diet therapy include diet effectiveness, social situations, and diet-related anxiety. Despite a lower than expected long-term adherence to maintenance of an elimination diet, the majority would recommend diet therapy as a treatment to other EoE patients.

Health-Related Quality of Life and Costs Associated With Eosinophilic Esophagitis: A Systematic Review.

BACKGROUND & AIMS: Eosinophilic esophagitis (EoE) is a chronic immune-mediated disease characterized by esophageal inflammation and dysfunction. Little is known about the humanistic and economic burden of the disease on patients, their caregivers, and the health care system. A systematic review was conducted to evaluate the existing literature on the disease burden of EoE for patients and their caregivers. METHODS: The MEDLINE, Embase, and Evidence-Based Medicine Reviews databases and recent congresses were searched on March 23, 2017, for English-language publications describing the impact of EoE on health-related quality of life (HRQoL) in children and adults, and the economic burden associated with the disease. RESULTS: Of 676 articles identified, 22 met the inclusion criteria and were included in this analysis (HRQoL, 13; economic burden, 7; cost effectiveness, 2). The included studies showed that EoE is associated with a significant impact on HRQoL, resulting in disruption to and restrictions on daily life for patients, their caregivers, and, in some instances, their families. Treatment with topical corticosteroids, the 6-food elimination diet, or the cow's milk elimination diet significantly improved the HRQoL of patients with EoE. Symptom severity was associated strongly with the impact of EoE on HRQoL. Medical resource utilization costs for patients with EoE were significantly higher than those for healthy controls. CONCLUSIONS: EoE negatively impacts the HRQoL of patients and their families, and is a burden to the health care system. Although data are sparse, currently available treatments appear to improve HRQoL.

Prospective assessment of disease-specific quality of life in adults with eosinophilic esophagitis.

Eosinophilic esophagitis (EoE) is an important cause of upper gastrointestinal dysfunction in children and adults. The EoE-quality of life (QOL)-A was validated as a disease-specific measure of quality of life in EoE. This study characterized the extent of QOL concerns in a cohort of adult EoE patients and delineated the relationships between QOL and other disease activity measures. One hundred sixty-seven patients enrolled in this prospective cohort study. Patients with established and suspected EoE undergoing endoscopy at a single university-based medical center were recruited. EoE was diagnosed on the basis of the clinical criteria and histologic demonstration of ≥15 eos/hpf while on proton pump inhibition therapy. Sixty five patients undergoing repeat endoscopy during the enrollment period participated twice. Patients provided demographic information and completed symptom assessments and the EoE-QOL-A. Analyses included comparisons with overall QOL as well as QOL subscales. Outcome measures included endoscopic activity using a validated instrument, the EoE Endoscopic Reference Score, and histology. Overall QOL was significantly correlated with dysphagia frequency, intensity, and severity (P < 0.001). Patients who experienced a food impaction in the last 30 days had significantly worse overall QOL (P = 0.009). There was no correlation between overall QOL and years since diagnosis, symptom duration, endoscopic features, or histologic findings. Patient symptoms correlated with endoscopic features of edema, rings, and stricture severity. Histologic activity was highly correlated with severity of endoscopic features. Patients who underwent repeat endoscopy with histologic response demonstrated improved eating and social QOL; however, overall QOL was unchanged. In adults with EoE, patient reported QOL is associated with symptom severity but not endoscopic or histologic features. Disease-specific QOL may complement parameters of biologic activity in the assessment of overall disease burden in EoE.

Lack of Knowledge and Low Readiness for Health Care Transition in Eosinophilic Esophagitis and Eosinophilic Gastroenteritis.

OBJECTIVES: A growing population of adolescents/young adults with eosinophilic esophagitis (EoE) and eosinophilic gastroenteritis (EGE) will need to transition from pediatric to adult health providers. Measuring health care transition (HCT) readiness is critical, but no studies have evaluated this process in EoE/EGE. We determined the scope and predictors of HCT knowledge in patients and parents with EoE/EGE and measured HCT readiness in adolescents/young adults. METHODS: We conducted an online survey of patients 13 years or older and parents of patients with EoE/EGE who were diagnosed when 25 years or younger. Parents answered questions regarding their children and their own knowledge of HCT. HCT readiness was assessed in adolescents/young adults aged 13 to 25 years with the Self-Management and Transition to Adulthood with Rx Questionnaire (a 6-domain self-report tool) with a score range of 0 to 90. RESULTS: Four hundred fifty participants completed the survey: 205 patients and 245 parents. Included in the analysis (those diagnosed with EoE/EGE at age 25 years or younger) were 75 of 205 patients and children of 245 parent respondents. Overall, 78% (n = 52) of the patients and 76% (n = 187) of parents had no HCT knowledge. Mean HCT readiness score in adolescents/young adults (n = 50) was 30.4 ±â€Š11.3 with higher scores in domains of provider communication and engagement during appointments. Mean parent-reported (n = 123) score was 35.6 ±â€Š9.7 with higher scores in medication management and disease knowledge. CONCLUSIONS: There was a significant deficit in HCT knowledge, and HCT readiness scores were lower than other chronic health conditions. HCT preparation and readiness assessments should become a priority for adolescents/young adults with EoE/EGE and their parents.