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

von Graffenried, Thea; Safroneeva, Ekaterina; Braegger, Christian; Ezri, Jessica; Garzoni, Luca; Giroud Rivier, Alexa; Greuter, Thomas; Köhler, Henrik; McLin, Valerie A; Marx, George; Müller, Pascal; Petit, Laetitia Marie; Schibli, Susanne; Sokollik, Christiane; Tempia-Caliera, Michela; Zwahlen, Marcel; Schoepfer, Alain M; Nydegger, Andreas (2024). Pediatric Patients with Eosinophilic Esophagitis and Their Parents Identify Symptoms as the Most Important Treatment Outcome. (In Press). International archives of allergy and immunology, pp. 1-9. Karger 10.1159/000535242

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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.

Item Type:	Journal Article (Original Article)
Division/Institute:	04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine 04 Faculty of Medicine > Department of Gynaecology, Paediatrics and Endocrinology (DFKE) > Clinic of Paediatric Medicine > Paediatric Gastroenterology 04 Faculty of Medicine > Pre-clinic Human Medicine > Institute of Social and Preventive Medicine (ISPM)
UniBE Contributor:	Safroneeva, Ekaterina, Schibli, Susanne, Sokollik, Christiane, Zwahlen, Marcel
Subjects:	600 Technology > 610 Medicine & health 300 Social sciences, sociology & anthropology > 360 Social problems & social services
ISSN:	1018-2438
Publisher:	Karger
Language:	English
Submitter:	Pubmed Import
Date Deposited:	07 Mar 2024 10:50
Last Modified:	15 Mar 2024 12:26
Publisher DOI:	10.1159/000535242
PubMed ID:	38447548
Uncontrolled Keywords:	Core outcome set Endpoints Eosinophilic esophagitis Parents’ perspective Pediatric patients’ perspective Therapy goals
URI:	https://boris.unibe.ch/id/eprint/193927