Table 2.

Themes and Sample Quotes From Focus Groups Exploring Symptoms and Outcomes Important to Patients With Accidental Bowel Leakage

Domains and Sub-domains	Participant Quotes
Primary bowel leakage symptoms
Bowel leakage (gas, mucus, liquid, solid)	“One thing diapers do not control is liquid stool and when I have them, liquid stools start coming out, there’s no stopping it..” “I have mucus all day, every day. It’s very annoying. I have my incontinence pad and I stick cotton squares or Kleenex at the crack.” “When I am walking or exercising I feel this boop boop boop – bubbles behind you. And you hope no other walkers are there.”
Predictability	“I never know when I’m going to have a bowel movement and that’s the real problem—is the not knowing.” “It’s just this weight of this fear, that it’s coming and I don’t know when.”
Awareness	“I don’t even know that it’s coming out.”
Urgency	“There’s no controlling [the urge] … when you’re sitting in a car driving home and it starts you can’t squeeze anything tight enough, nothing, you just have to sit in it until you get home and hope the neighbors aren’t out there..”
Ancillary bowel symptoms
Constipation	“It’s mainly when I’m constipated and then [bowel leakage] will be days after it.”
Obstructed defecation	“Sometimes it’s so soft that it will just not come out…I’ve got a part that just won’t come out so I wipe, and I wipe, and I wipe, and the next time it’s in my panties then”.
Wiping and cleanliness	“It’s loose and it keeps coming and you’re wiping and a few minutes later you’re back in the bathroom wiping, or you’ve had an accident that you didn’t know you had.”
Discomfort	Prior to having a bowel movement or leakage: “like someone’s cutting a knife up your rectum.” After having leakage: “the wetness and burning, very uncomfortable. It’s horrible.”