Objective: With increasing treatment options for patients suffering from inflammatory bowel disease (IBD), we aimed to qualitatively evaluate the disease and treatment characteristics IBD patients find most important. 
Method: This qualitative study consisted out of i) a scoping literature review, ii) two focus group discussions with Belgian IBD patients (n=11) using the nominal group technique, and iii) a qualitative thematic analysis using the framework method.
Results: IBD patients with varying disease and treatment characteristics found it key that treatments would reduce the frequency and severity of their gastrointestinal symptoms (e.g., diarrhea, urgency, incontinence, nocturnal defecation, bowel movements, constipation, and abdominal cramps) and therefore decrease the symptoms’ negative influence on both psychological and social aspects of quality of life. Vision problems and reduced energy were highlighted as major issues, reducing patients’ ability to live their normal lives. Participants also discussed the negative impact of following symptoms and adverse events on their body-image: severe skin conditions, fluctuations in body weight, hair loss, developing facial hair, and developing a moon face. IBD patients attached great importance to the uncertainties and fears they experienced regarding the effectiveness and onset of action of their medication, the long-term effects, and the possible need for surgery or an ostomy. Participants also extensively discussed the mental aspect of having IBD and the guidance, support, and communication with healthcare workers regarding patients’ emotional well-being.
Conclusion: This study acquired an in-depth understanding of the treatment and disease-related characteristics that are most important to IBD patients. Results show that IBD drug development and individual treatment decision-making does not only need to focus on controlling IBD patients’ gastrointestinal symptoms, but also on other symptoms and adverse events that significantly impact IBD patients’ quality of life. These findings will be used in a subsequent quantitative study. This study further underscores the need for a transparent communication between healthcare providers and IBD patients. In addition, more consideration should be given to the psychological problems and emotional well-being of IBD patients. Finally, the obtained results may give insights to drug developers and other stakeholders (regulators, health technology assessment bodies, payers, and clinicians) about the unmet medical needs IBD patients have regarding available treatments, and therefore can aid patient-centric decision-making across the drug life cycle.

**Objective:** With increasing treatment options for patients suffering from inflammatory bowel disease (IBD), we aimed to qualitatively evaluate the disease and treatment characteristics IBD patients find most important. 
**Method:** This qualitative study consisted out of i) a scoping literature review, ii) two focus group discussions with Belgian IBD patients (n=11) using the nominal group technique, and iii) a qualitative thematic analysis using the framework method.
**Results:** IBD patients with varying disease and treatment characteristics found it key that treatments would reduce the frequency and severity of their gastrointestinal symptoms (e.g., diarrhea, urgency, incontinence, nocturnal defecation, bowel movements, constipation, and abdominal cramps) and therefore decrease the symptoms’ negative influence on both psychological and social aspects of quality of life. Vision problems and reduced energy were highlighted as major issues, reducing patients’ ability to live their normal lives. Participants also discussed the negative impact of following symptoms and adverse events on their body-image: severe skin conditions, fluctuations in body weight, hair loss, developing facial hair, and developing a moon face. IBD patients attached great importance to the uncertainties and fears they experienced regarding the effectiveness and onset of action of their medication, the long-term effects, and the possible need for surgery or an ostomy. Participants also extensively discussed the mental aspect of having IBD and the guidance, support, and communication with healthcare workers regarding patients’ emotional well-being.
**Conclusion:** This study acquired an in-depth understanding of the treatment and disease-related characteristics that are most important to IBD patients. Results show that IBD drug development and individual treatment decision-making does not only need to focus on controlling IBD patients’ gastrointestinal symptoms, but also on other symptoms and adverse events that significantly impact IBD patients’ quality of life. These findings will be used in a subsequent quantitative study. This study further underscores the need for a transparent communication between healthcare providers and IBD patients. In addition, more consideration should be given to the psychological problems and emotional well-being of IBD patients. Finally, the obtained results may give insights to drug developers and other stakeholders (regulators, health technology assessment bodies, payers, and clinicians) about the unmet medical needs IBD patients have regarding available treatments, and therefore can aid patient-centric decision-making across the drug life cycle.

Patient Preferences for Inflammatory Bowel Disease: A Qualitative Study in Belgium

DIA Europe 2022

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