An assessment of symptom burden in inflammatory bowel diseases to develop a patient preference-weighted symptom score

• Published in: Quality of life research 2020-12, Vol.29 (12), p.3387-3396
• Main Authors: van Deen, Welmoed K., Obremskey, Alexandra, Moore, Graham, van den Akker-van Marle, M. Elske, Doctor, Jason N., Hwang, Caroline
• Format: Article
• Language: English
• Subjects: Disease; Female; Humans; Inflammatory bowel disease; Inflammatory Bowel Diseases - diagnosis; Inflammatory Bowel Diseases - physiopathology; Male; Medicine; Medicine & Public Health; Patients; Preferences; Public Health; Quality of Life - psychology; Quality of Life Research; Sociology; Surveys and Questionnaires
• ISSN: 0962-9343; 1573-2649
• DOI: 10.1007/s11136-020-02606-2

Purpose Inflammatory bowel disease (IBD) patients experience diverse symptoms and the impact of these different symptoms varies substantially. Current disease activity measures do not account for the relative importance of the different symptoms and severity levels. In this study, we aimed to quantify the relative importance of different symptoms for IBD patients and to develop a patient preference-weighted symptom (PWS) score to assess symptom burden in IBD. Methods We performed a choice-based conjoint analysis (CBCA) survey with 129 IBD patients to estimate the relative importance of four common IBD symptoms: stool frequency, abdominal pain, blood in stools, and urgency. We then developed the PWS score using the preferences obtained from the CBCA, which we validated against existing measures. Results CBCA revealed that urgency was the most important symptom to patients, followed by abdominal pain and blood in stools. Urgency associated with incontinence received particularly high scores and was perceived to be more than 3 times as important as urgency without incontinence. Our results confirmed that different symptoms are not equally bothersome, and we showed that the relation between symptom-level and importance is not linear. The PWS score, which we developed using these estimates was highly correlated with existing disease activity measures. Conclusions We quantified the relative importance of four common IBD symptoms and developed the PWS score for IBD, which takes the relative importance of different symptoms and symptom-levels into account. The PWS score can be used to obtain a patient-centered assessment of symptom burden.