The knowledge and expectations about IBD - difference between pediatric patients and their parents

Area of Science:

• Pediatric Gastroenterology
• Patient Education
• Chronic Disease Management

Background:

• Inflammatory bowel disease (IBD) significantly impacts children and adolescents.
• Understanding patient and parent knowledge is crucial for effective care.
• Discrepancies in disease perception can affect treatment adherence and outcomes.

Purpose of the Study:

• To compare knowledge levels of pediatric IBD patients and their parents regarding the disease.
• To identify primary sources of disease-related information for both groups.
• To gather insights for improving patient and family support and education.

Main Methods:

• A prospective survey was conducted.
• Participants included children aged 12 years and older with IBD and their parents.
• Ambulatory patients from a tertiary medical center were enrolled.

Main Results:

• Significant differences were observed in information-seeking behaviors, with parents more frequently using the internet (73.7%) than children (44.7%).
• Parents expressed a higher desire for participation in patient organizations (97.4%) compared to children (55.3%).
• Parents (78.9%) strongly encouraged physician-child alone time, contrasting with children's low preference (2.6%).

Conclusions:

• There are notable disparities in understanding and preferences between pediatric IBD patients and their parents.
• These differences must be considered when developing clinical strategies and educational interventions.
• Tailored approaches are needed to address the unique needs of both children with IBD and their families.