Pediatric Patients with Eosinophilic Esophagitis and Their Parents Identify Symptoms as the Most Important Treatment Outcome.

IF 2.5 4区 医学 Q3 ALLERGY International Archives of Allergy and Immunology Pub Date : 2024-01-01 Epub Date: 2024-03-06 DOI:10.1159/000535242
Thea von Graffenried, Ekaterina Safroneeva, Christian Braegger, Jessica Ezri, Luca Garzoni, Alexa Giroud Rivier, Thomas Greuter, Henrik Köhler, Valerie A McLin, George Marx, Pascal Müller, Laetitia Marie Petit, Susanne Schibli, Christiane Sokollik, Michela Tempia-Caliera, Marcel Zwahlen, Alain M Schoepfer, Andreas Nydegger
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Abstract

Introduction: Given the lack of data, we aimed to explore which therapeutic endpoints pediatric patients with eosinophilic esophagitis (EoE) and their parents consider to be relevant.

Methods: We created an educational brochure on EoE and a questionnaire, both of which were content-validated by pediatric patients and parents. Validated documents were sent to 112 patients and parents. They ranked the importance (5 levels) of short (during next 3 months) and long-term (≥1 year) treatment effect on symptoms, quality of life, endoscopic inflammation, stricture formation, histological inflammation, and fibrosis.

Results: A total of 45 parents and 30 pediatric patients ≥11 years completed the questionnaires. Pediatric patients identified improvement in the following domains as most important in the short- and long-term, respectively: symptoms (73% vs. 77%), QoL (53% vs. 57%), histologic inflammation (47% vs. 50%), histologic fibrosis (40% vs. 33%), endoscopic inflammation (47% vs. 40%), and strictures (33% vs. 40%). Parents of children ≥11 years old classified improvement in the following domains as most important in the short- and long-term, respectively: symptoms (70% vs. 83%), QoL (63% vs. 80%), histologic inflammation (67% vs. 77%), histologic fibrosis (47% vs. 63%), endoscopic inflammation (77% vs. 80%), and strictures (40% vs. 53%). Agreement between caregiver and children on the short-term importance of treatment outcomes was as follows: symptoms (77%), QoL (40%), histologic inflammation and fibrosis (47% and 43%), endoscopic inflammation and strictures (50% and 40%).

Conclusion: Pediatric patients and parents attributed most importance to improvement in symptoms and QoL. Agreement between parents and patients regarding therapy goals is limited.

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嗜酸性粒细胞食管炎小儿患者及其家长认为症状是最重要的治疗结果。
简介:鉴于缺乏数据,我们旨在探索嗜酸性粒细胞食管炎(EoE)小儿患者及其家长认为哪些治疗终点是相关的:鉴于缺乏数据,我们旨在探索嗜酸性粒细胞食管炎(EoE)儿科患者及其家长认为哪些治疗终点是相关的:我们制作了一本关于嗜酸性粒细胞性食管炎的教育手册和一份调查问卷,这两份材料的内容都经过了儿科患者和家长的验证。经过验证的文件发送给了 112 名患者和家长。他们对短期(未来3个月内)和长期(≥1年)治疗效果对症状、生活质量、内镜炎症、狭窄形成、组织学炎症和纤维化的重要性(5个等级)进行了排名:共有 45 位家长和 30 位年龄≥11 岁的儿童患者完成了问卷调查。儿科患者认为短期和长期治疗对以下方面的改善最为重要:症状(73% 对 77%)、生活质量(53% 对 57%)、组织学炎症(47% 对 50%)、组织学纤维化(40% 对 33%)、内镜下炎症(47% 对 40%)和狭窄(33% 对 40%)。≥11岁儿童的家长认为,短期和长期改善最重要的领域分别是:症状(70% vs. 83%)、生活质量(63% vs. 80%)、组织学炎症(67% vs. 77%)、组织学纤维化(47% vs. 63%)、内镜炎症(77% vs. 80%)和狭窄(40% vs. 53%)。护理人员和儿童对治疗结果的短期重要性的一致意见如下:症状(77%)、QoL(40%)、组织学炎症和纤维化(47% 和 43%)、内镜炎症和狭窄(50% 和 40%):结论:儿科患者和家长最重视症状和生活质量的改善。结论:小儿患者和家长最重视症状和 QoL 的改善,但家长和患者对治疗目标的认同度有限。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
CiteScore
5.60
自引率
3.60%
发文量
105
审稿时长
2 months
期刊介绍: ''International Archives of Allergy and Immunology'' provides a forum for basic and clinical research in modern molecular and cellular allergology and immunology. Appearing monthly, the journal publishes original work in the fields of allergy, immunopathology, immunogenetics, immunopharmacology, immunoendocrinology, tumor immunology, mucosal immunity, transplantation and immunology of infectious and connective tissue diseases.
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