Background Poor adherence to clinical practice guidelines for eosinophilic esophagitis (EoE) has been described and the diagnostic delay of the disease continues to be unacceptable in many settings. Objective To analyze the impact of improved knowledge provided by the successive international clinical practice guidelines on reducing diagnostic delay and improving the diagnostic process for European patients with EoE. Methods Cross‐sectional analysis of the EoE CONNECT registry based on clinical practice. Time periods defined by the publication dates of four major sets of guidelines over 10 years were considered. Patients were grouped per time period according to date of symptom onset. Results Data from 1,132 patients was analyzed and median (IQR) diagnostic delay in the whole series was 2.1 (0.7‐6.2) years. This gradually decreased over time with subsequent release of new guidelines (p < 0.001), from 12.7 years up to 2007 to 0.7 years after 2017. The proportion of patients with stricturing of mixed phenotypes at the point of EoE diagnosis also decreased over time (41.3% vs. 16%; p < 0.001), as did EREFS scores. The fibrotic sub‐score decreased from a median (IQR) of 2 (1‐2) to 0 (0‐1) when patients whose symptoms started up to 2007 and after 2017 were compared (p < 0.001). In parallel, symptoms measured with the Dysphagia Symptoms Score reduced significantly when patients with symptoms starting before 2007 and after 2012 were compared. A reduction in the number of endoscopies patients underwent before the one that achieved an EoE diagnosis, and the use of allergy testing as part of the diagnostic workout of EoE, also reduced significantly over time (p = 0.010 and p < 0.001, respectively). Conclusion The diagnostic work‐up of EoE patients improved substantially over time at the European sites contributing to EoE CONNECT, with a dramatic reduction in diagnostic delay.
Background: The growing prevalence of eosinophilic esophagitis (EoE) represents a considerable burden to patients and health care systems. Optimizing cost-effective management and identifying mechanisms for disease onset and progression are required. However, the paucity of large patient cohorts and heterogeneity of practice hinder the defining of optimal management of EoE. Methods: EoE CONNECT is an ongoing, prospective registry study initiated in 2016 and currently managed by EUREOS, the European Consortium for Eosinophilic Diseases of the Gastrointestinal Tract. Patients are managed and treated by their responsible specialists independently. Data recorded using a web-based system include demographic and clinical variables; patient allergies; environmental, intrapartum, and early life exposures; and family background. Symptoms are structurally assessed at every visit; endoscopic features and histological findings are recorded for each examination. Prospective treatment data are registered sequentially, with new sequences created each time a different treatment (active principle, formulation, or dose) is administered to a patient. EoE CONNECT database is actively monitored to ensure the highest data accuracy and the highest scientific and ethical standards. Results: EoE CONNECT is currently being conducted at 39 centers in Europe and enrolls patients of all ages with EoE. In its aim to increase knowledge, to date EoE CONNECT has provided evidence on the effectiveness of first- and second-line therapies for EoE in clinical practice, the ability of proton pump inhibitors to induce disease remission, and factors associated with improved response. Drug effects to reverse fibrous remodeling and endoscopic features of fibrosis in EoE have also been assessed. Conclusion: This prospective registry study will provide important information on the epidemiological and clinical aspects of EoE and evidence as to the real-world and long-term effectiveness and safety of therapy. These data will potentially be a vital benchmark for planning future EoE health care services in Europe.
Objective To examine clinical, cognitive, and psychological predictors of Quality of Life (QOL) among Hispanics and non-Hispanics with epilepsy. Participants and Method Data was collected from 90 patients (52 Hispanic; H, 38 Non-Hispanic; NH) diagnosed with epilepsy and referred for neuropsychological evaluation that included measures of depression (BDI-II), anxiety (BAI), and QOL using the Personal Impact of Epilepsy Scale (PIES). We conducted multiple linear regression models with patient’s full-scale IQ, age of seizure onset, duration of seizure disorder, and anxiety and depression symptom severity entered as predictors, with the PIES as outcome measure. Results There were no significant differences between H and NH on any demographic or clinical variable except for longer duration of seizure disorder (t = 2.20, p = 0.03) in H. For the complete sample, higher FSIQ predicted better QOL in relation to the perceived disabling effects of seizures (β = .28, p =.02), higher BDI-II scores predicted more negative medication side effects and greater mood related disruption in QOL (β = -2.27, p =.03; β = -3.82, p =.00), and higher BAI scores were the best predictor for worse overall QOL (β = -.29, p = .05). When the sample was divided according to ethnic background, longer seizure duration was associated with the adverse effects of less medication in the H group (β = .32, p =.04), with all other findings being identical to those of the complete sample. When results for NH patients were analyzed, none of the intellectual, psychological and clinical variables were significantly associated with any of the QOL scales; however, the relationship between the BAI and comorbid mood dysfunction approached significance (β = -1.45, p = .059). Conclusions Our data indicates that overall QOL was primarily predicted by the severity of anxiety symptoms, but not influenced by overall intelligence, symptoms of depression, and clinical seizure variables.
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