P015 Quantification of inflammatory bowel disease symptom burden based on patient preferences
Authors: Welmoed van Deen , Alexandra Obremskey , Graham Moore , Marle Elske van den Akker-van , Jason Doctor , Caroline Hwang 
Published: July 2019

BACKGROUND:
Inflammatory bowel diseases (IBD) cause a wide variety of gastrointestinal symptoms including abdominal pain, diarrhea, and rectal bleeding. It is well known that the type and level of symptoms that patients experience varies widely. In previously presented work, our group performed a series of focus groups to understand the impact of different symptoms on patients. We identified that symptoms that cause disability, anxiety, and those that are out of the patient's control are perceived to be the most burdensome. The 4 gastrointestinal symptoms that patients described as most burdensome were abdominal pain, rectal bleeding, urgency and incontinence, and stool frequency. Additionally, we observed that the relative burden of different symptoms varied. Therefore, the aim of the current study is to quantify the relative importance of 4 common IBD symptoms and their severity for IBD patients.

METHODS:
To quantify the relative importance of different symptoms and severity levels, a choice-based conjoint (CBC) analysis survey was developed. In the survey, patients are asked to complete 16 CBC questions, in which they choose one out of 2 scenarios with different levels of severity for 4 different symptoms. Abdominal pain, rectal bleeding, stool frequency, and urgency/incontinence are the 4 symptoms included in the survey. Severity levels are based on the levels used in common disease activity measures. Clinical information including the type of IBD and disease duration is obtained from the chart. A Hierarchical Bayes analysis is used to quantify the relative importance of different severity levels for each of the symptoms. Patients 18 years or older with a confirmed IBD diagnosis are eligible to participate. Patients with a stoma are excluded.

RESULTS:
Thus far, 100 eligible patients have completed the survey (46% male, mean age 39 [SD 15]). Two patients were excluded after finalizing the survey as they did not fulfill eligibility criteria (stoma and unconfirmed IBD diagnosis). Four eligible patients started but did not finish the survey. Of the included patients, 55% were diagnosed with CD, 39% with UC, and 6% with IBDU, with an average disease duration of 9 years (SD 7). Conjoint analysis revealed that urgency/incontinence was the most important symptom for patients: 1.5× more important than abdominal pain, 2.2× more important than rectal bleeding, and 3.5× more important than stool frequency. As expected, higher symptom levels were perceived to be more important than lower symptom levels. In particular, urgency leading to incontinence was a major factor driving patients decisions to select one scenario over another.

CONCLUSION(S):
In this study, we quantified the relative importance of 4 common symptoms and severity levels that IBD patients experience. We found large differences in the observed importance of different symptoms for IBD patients. Urgency/incontinence was shown to be particularly bothersome, while stool frequency by itself was not perceived to be very burdensome. These results will be used to develop a score to quantify symptom-burden in IBD patients.