PATIENTS’ JOURNEY THROUGH INFLAMMATORY BOWEL DISEASE (IBD): A QUALITATIVE STUDY

Abstract Background Inflammatory bowel disease (IBD) is a debilitating intestinal condition, manifesting as Crohn’s disease (CD), ulcerative colitis (UC) or indeterminate colitis (IC). The patient experience is impacted by a lack of awareness from other stakeholders despite growing global disease prevalence. To gain deeper insight of the patient experience, promote quality care, and enhance quality of life, we performed a qualitative study of the patient journey starting from pre-diagnosis through treatment. Methods U.S. patients with IBD were recruited via UC/CD support groups and organizations, social media platforms, blog followers, and personal networks. Participants were screened via an emailed survey and asked to self-identify as medically diagnosed on the basis of reported diagnostic testing. Interviews were conducted by qualitative researchers by phone or web conferencing. Open-ended questions were developed to support and gather information about our learning objectives—primarily, our desire to understand the unique experiences of UC/CD patients in their journey from symptom onset through diagnosis, treatment and maintenance (e.g. “Upon diagnosis, what were your immediate thoughts about the condition?”). This qualitative data were analyzed using Human-Centered Design methodology, including patient typologies (personas), forced temporal zoom (journey maps), forced semantic zoom (stakeholder system mapping), and affinity mapping for pattern recognition of unmet needs. Results A total of 32 patients were interviewed: N=17 CD patients, N=13 UC patients and N=2 IC patients. The interviewed population reflected regional, demographic, and disease-related diversity (Table 1). Five unique, mutually exclusive journeys were identified to understand and classify patient experiences: (1) Journey of Independence, (2) Journey of Acceptance, (3) Journey of Recognition, (4) Journey of Passion and (5) Journey of Determination (Figure 1). Patients with IBD expressed a need for increased awareness, education, and training for providers to shorten the path to diagnosis. Mental health support was found to be a critical gap in care, particularly for major treatment decisions (e.g., surgery). The inclusion of emotional support into the treatment paradigm was perceived as essential to long-term wellness. Patient attitudes and self-advocacy varied on their individual journeys; understanding these journeys may accelerate time to diagnosis and treatment. Conclusion Better understanding of patient journeys can help healthcare providers improve their approach to patient care and coordination.