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.

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.