BACKGROUND: Patients’ perspectives on their Crohn’s disease (CD) symptoms and the impacts of CD on their daily lives can be used to inform clinical care and treatment development. This study aimed to elicit in-depth qualitative information on the symptom burden of CD and to quantify which symptoms patients considered most bothersome and most important to improve.
METHODS: Individual, web-based interviews were conducted in adults and adolescents (aged 15–17 years) with moderately to severely active CD. Participants were asked open-ended questions to elicit their experiences with CD and CD-related impacts on their daily lives. Participants were then probed about symptom- and impact-related concepts of interest that they did not spontaneously report. Participants were asked which symptoms they considered most bothersome and which symptoms they considered most important to improve. Interview transcripts and field notes were analyzed using a standard thematic analysis approach.
RESULTS: 17 adults and 3 adolescents participated between May and July 2023. Participants were 17–60 [mean=38] years old; 70% were female [n=14]; 70% were White [n=14]. Participants had been diagnosed, on average, 10 (range: 0.5–29) years ago. Over half (n=13, 65%) reported moderate CD severity. Nearly all participants reported fatigue (n=19, 95%), bowel urgency (n=18, 90%), diarrhea (n=18, 90%), abdominal pain (n=17, 85%), and frequent bowel movements (n=15, 75%). About a third reported nausea (n=7, 35%), bloating (n=6, 30%), joint pain (n=6, 30%), or blood in their stool (n=6, 30%). In total, nine different most bothersome symptoms or treatment priorities were reported across participants (Figure 1). Participants most commonly reported abdominal pain (n=6, 30%), bowel urgency (n=4, 20%), and diarrhea (n=4, 20%) as their most bothersome symptoms; these were also the symptoms most commonly reported as the most important to improve (abdominal pain: n=7, 35%; bowel urgency: n=5, 25%; diarrhea: n=4, 20%) (Figure 1). All participants reported that CD hinders their daily activities, and nearly all reported that CD affects their mood or emotions (n=19, 95%), social activities or relationships (n=19, 95%), work or school (e.g., loss of productivity) (n=18, 90%), and sleep (n=15, 75%) (Table 1). Participants described "feel[ing] left out", "want[ing] to stay home", and having to cancel or leave activities because of their CD. Several participants indicated that they "plan their day around [their CD]".
CONCLUSION: Patients with moderately to severely active CD were burdened by a variety of symptoms. Patients commonly considered abdominal pain, bowel urgency, and diarrhea symptoms to be the most bothersome and the most important to improve.
