Pediatric Patients' Perspectives on Crohn's Disease: Insights into Disease Experience and Motivation for Self-Care

Introduction and objectives: Pediatric inflammatory Bowel Disease (IBD) patients often face challenges in coping and disease management, which can impact self-management. This study investigates these patients' conceptualization of the disease and motivations for self-management. Methods: Descriptive cross-sectional study using a self-administered, semi-structured online questionnaire applied to pediatric Crohn’s Disease (CD) patients diagnosed>3 years, aiming to assess the impact of living with CD. Results: 10 patients included, 80% female, mean age 15.4 years, mean disease duration of 5.2 years. All patients were in remission with mean PCDAI of 3 (±4.8) and a mean IMPACT III score of 81.1). All patients reported good disease knowledge and adequate coping. Emotional responses at diagnosis included relief (60%) and negative emotions (40%). During relapses, anxiety and fear were prevalent, with 40% struggling with relapses. Therapeutic changes and monitoring were viewed as beneficial (100%) but with concern; 70% found monitoring tests a negative experience. Daily life impact was reported by 20%, with school accomplishments affected during relapses (40%). Extracurricular activities were limited during active disease (40%). Concerns about the future were noted by 40%, with 30% believing CD might limit their future. Most patients described appropriate self-efficacy: 60% self-managed, while 30% relied on parents. Transition to adult care was deemed necessary. Conclusion: This study illustrates the overall impact of disease on pediatric CD patients. It reports significant emotional and daily life challenges. The findings underscore the importance of psychosocial well-being, ongoing mental health assessment, non-invasive monitoring, and holistic care, emphasizing the patient perspective in managing pediatric CD.