Children's and caregivers' experiences, information needs, and willingness to change lifestyle in metabolic dysfunction‐associated steatotic liver disease care: A multicenter study across Europe

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Publication Details

Journal
Journal of Pediatric Gastroenterology and Nutrition
Published
2026-09-17
DOI
https://doi.org/10.1002/jpn3.70587
Primary Topic
Liver Disease Diagnosis and Treatment
Type
article
Field-Weighted Citation Impact
0.00
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article

Children's and caregivers' experiences, information needs, and willingness to change lifestyle in metabolic dysfunction‐associated steatotic liver disease care: A multicenter study across Europe

Sander Lefere, Anita Vreugdenhil, Wojciech Jańczyk, Eberhard Lurz et al.
Journal of Pediatric Gastroenterology and Nutrition
Liver Disease Diagnosis and Treatment
article

Children's and caregivers' experiences, information needs, and willingness to change lifestyle in metabolic dysfunction‐associated steatotic liver disease care: A multicenter study across Europe

Sander Lefere, Anita Vreugdenhil, Wojciech Jańczyk, Eberhard Lurz, María Mercadal‐Hally, Hadar Moran‐Lev, Claudia Mandato, Antonella Mosca, Corina Pienar, Çiğdem Arıkan, Anastasia Konidari, Ruth De Bruyne, Jernej Brecelj, Bart G.P. Koot, Christian Hudert, N.Yu. Zavhorodnia, Marc A. Benninga, Guusje H. J. van Giesen, Maarten Buytaert, Anne-Sophie R Stroes, Steatotic Liver Disease Special Interest Group of ESPGHAN
article en

Abstract

OBJECTIVE: Little is known about children's and caregivers' experiences, information needs, and willingness to change lifestyle following evaluation for metabolic dysfunction-associated steatotic liver disease (MASLD). This study assessed these aspects across European hepatology clinics. METHODS: Children and caregivers completed a web-based questionnaire after the MASLD evaluation visit, assessing discomfort, information sufficiency, and willingness to change lifestyle using mainly 5-point Likert scales. RESULTS: The cohort included 249 children (13 ± 3 years) from 12 countries. DISCOMFORT: Before the visit, most children reported "no" or "slight" nervousness, anxiety, or worry, whereas 7%-9% reported "very" or "extreme" discomfort and 14% felt negative. Nervousness was slightly higher at first visits than follow-up visits. During the visit, 4% were "very" or "extremely" nervous and 62% felt highly supported by the physician. After the visit, 7% still felt negative, although anxiety remained low (68% "no" or "slight"). Caregiver assessments (n = 203) cross-validated these findings. INFORMATION: Over half (51%) reported "no" or "slight" pre-visit knowledge, yet 81% rated information during the visit as "very" or "extremely" sufficient. Pre-visit knowledge was higher at follow-up. Caregivers rated information sufficiency higher than children and more often intended to seek information (57% vs. 23%, p < 0.001). Lifestyle: 44% reported high willingness to change lifestyle post-visit, consistent with caregiver expectations. CONCLUSIONS: MASLD evaluation was associated with low burden overall, although a small subset experienced high discomfort. Baseline knowledge about the visit was low. Perceived information sufficiency was high, however, only 44% reported high willingness to change lifestyle post-visit. Better information tools are needed to improve screening acceptability and lifestyle motivation.

Journal of Pediatric Gastroenterology and Nutrition
University of Salerno (IT), Koç University (TR), University of Ljubljana (SI), Tel Aviv University (IL), Maastricht University Medical Centre (NL), Ghent University Hospital (BE), Ljubljana University Medical Centre (SI), LMU Klinikum (DE), Victor Babeș University of Medicine and Pharmacy Timișoara (RO), Children's Memorial Health Institute (PL), Bambino Gesù Children's Hospital (IT), Vall d'Hebron Hospital Universitari (ES), Institute of Gastroenterology of the National Academy of Medical Sciences of Ukraine (UA), Amsterdam University Medical Centers (NL), Panagiotis & Aglaia Kyriakou Children's Hospital (GR), Charité - Universitätsmedizin Berlin (DE), Ludwig-Maximilians-Universität München (DE), University of Amsterdam (NL)
Openalex Percentile: Top 11%
Liver Disease Diagnosis and Treatment
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