Exploring Pediatric Perspectives on Crohn’s Disease: A Qualitative Study of Knowledge, Lived Experience, and Self-Management

Abstract

Background: Pediatric Crohn’s Disease (CD) affects more than physical health, influencing emotional well-being, social integration, and developmental milestones, with an impact on disease management. This study aimed to explore adolescents’ lived experiences with CD and identify factors influencing their motivation for self-management. Methods: A descriptive, cross-sectional qualitative study was conducted using a semi-structured, self-administered online questionnaire. Participants (n = 10) were adolescents with CD who had been diagnosed for over three years and were recruited from a tertiary pediatric gastroenterology center. Data included demographics, clinical characteristics, IMPACT-III (HRQOL), and PROMIS short forms. Open-ended responses underwent thematic analysis using the framework developed by Braun and Clarke. Results: Participants (80% female, median age 16.2 years, median disease duration 4.6 years) were all in clinical remission (median PCDAI = 2) and with good quality of life (median IMPACT-III = 80.7). Six themes emerged: (1) disease knowledge, (2) emotional responses, (3) coping and adaptation, (4) social support, (5) daily life and school impact, and (6) transition to adult care. Most participants demonstrated strong disease literacy and reported effective coping strategies. Emotional responses to diagnosis ranged from relief (60%) to distress (40%); relapses commonly triggered anxiety and fear. Therapeutic changes and disease monitoring were perceived as beneficial (100%) but with concern. Diagnostic procedures were viewed as burdensome by 70% of respondents. School performance and extracurricular participation were negatively affected in 40% during flares. Concerns regarding the future were reported by 40% of participants, with 30% believing that CD might limit life aspirations. While 60% managed their disease independently, 30% relied on parental support. All acknowledged the need for transition to adult care, though readiness varied. Conclusions: This study illustrates the overall impact of disease on pediatric CD patients. It reports significant emotional challenges and difficulties, as well as an impact on daily life, despite good disease knowledge. 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.