How do UC patients define severe bowel urgency, meaningful change?

Ulcerative colitis (UC) patients appear to be in general agreement about what constituted “mild” and “moderate” bowel urgency on an 11-point scale, reports a recent study presented at the 2022 Crohn’s & Colitis Congress (CCC 2022).

In contrast, opinions of what qualified as “severe” bowel urgency were split between two score ranges, suggesting that there might be a need for a new classification to indicate “very severe” bowel urgency.

The current qualitative study involved 20 adult patients (mean age 42.6 years, 50 percent women) with clinician-confirmed moderate-to-severe UC. Through in-depth interviews, the researchers asked participants to define, using an 11-point numeric rating scale (NRS), different levels of bowel urgency severity, setting 0 points for no urgency and 11 points for the worst possible urgency.

Most patients (n=17; 85 percent) identified mild bowel urgency as 1–3 points on the NRS; two of the remaining three patients agreed but included 0 in their designated score range. Participants described mild bowel urgency as almost normal to normal urgency (n=6) or as being able to make it to the bathroom easily (n=6). Mild urgency also meant less worry for participants (n=4) or allowing them to leave the house (n=2). [CCC 2022, Newton et al]

Similarly, agreement for moderate bowel urgency was high, with 80 percent (n=16) of respondents matching this level of urgency to 4–6 points on the NRS. Most (80 percent) of them said that moderate urgency required them to be close to a bathroom.

On the other hand, ratings for severe bowel urgency were split, with 65 percent (n=13) setting this level at 8–10 points, and 35 percent (n=7) at 6–8 points. Of note, some participants considered 6 points as severe, while others still considered it as moderate urgency. Eight respondents (40 percent) described severe urgency as an immediate or uncontrollable need to use the toilet, which in turn negatively impacts their ability to leave the house (n=8; 40 percent).

The researchers pointed out that the highest end of the spectrum (scores 8–10 points) were described by participants as the “worst,” “super severe,” or “extreme” urgency.

The interview also sought to assess what participants considered meaningful change in bowel urgency to be and how such change could impact their daily lives.

Half of the participants reported that even a 1-point improvement in the NRS would be meaningful; most also said that any change in score would be an improvement. Five participants (25 percent) stated that 2 points would constitute meaningful change, while the other five (25 percent) required a 3-point improvement in NRS scores.

Regardless of how big of a point change they required, participants agreed that meaningful change should reflect improvements in emotional wellbeing and bowel urgency, leading to greater confidence to leave the house or go to work.

“This qualitative study revealed that UC patients largely agreed regarding ratings of ‘mild’ or moderate’ bowel urgency,” the researchers said. “’Severe’ bowel urgency was split between two ranges, suggesting the existence of ‘very severe’ bowel urgency.”

“In addition, the majority of UC patients perceived a 1- or 2-point reduction on the urgency NRS as a meaningful change in their lives,” they said.