Patient Research on IBD for a Global Biotechnology Company

Case Study: Exploring the Patient Journey of Adults with Inflammatory Bowel Disease (IBD)

Project Summary

This qualitative study aimed to understand the journeys of adults with IBD, uncovering both explicit and implicit unmet needs across the healthcare continuum. Utilizing patient diaries and in-depth interviews, the research captured the personal experiences of living with IBD, offering insights into the unique challenges and support needs of this population.

The Challenge

The study investigated the physical, emotional, and social impacts of IBD, focusing on the barriers patients faced within the healthcare system and the misalignments between patient and physician treatment goals. The objective was to use these insights to improve care and quality of life for IBD patients by addressing gaps in support and care delivery.

Methods

Participant Recruitment

Patients were recruited through IBD support groups, social media, and personal networks. An email survey was conducted to screen participants, ensuring a balanced sample across demographics and disease characteristics.

Data Collection

Data collection involved in-depth interviews and patient diaries. Before the interviews, participants created "IBD diaries" containing 5-10 images that represented their daily lives, such as meals, treatments, environments, and activities. These images served as discussion guides, helping to elicit deeper insights into patients’ lived experiences.

Analysis and Synthesis

Interview and diary data were systematically analyzed to identify common themes related to physical, emotional, and social impacts, healthcare barriers, and discrepancies in treatment goals. These insights were synthesized to form a comprehensive view of the needs of IBD patients.

Results

Thirty-two patients shared their experiences, revealing six key milestones in their IBD journey: diagnosis, awareness, treatment progression, resistance, acceptance, and management. These stages were distilled into five patient journey maps, highlighting shared experiences such as delayed diagnoses, frustrations with treatment cycling, a need for emotional support, and the importance of a strong patient-provider relationship.

The study found that individual patient mindsets significantly influenced treatment choices. Improving care for IBD patients involved understanding these journey milestones, recognizing common barriers, and enhancing the focus on the patient-provider relationship.

Deliverables

Final deliverables included personas, journey maps, circles of care, a manuscript, and posters that were presented at global conferences. These resources provided actionable insights for improving care for IBD patients, underscoring the importance of empathy and individualized support.