Patient's Perspective on Disease Burden, Remission Definition, and Symptoms Associated With Treatment Seeking: A Qualitative Study in Adult and Adolescent Patients With Crohn's Disease. Issue 2 (5th May 2020)

• Record Type: Journal Article
• Authors: Kitchen, Helen; Farrar, Mallory; Al-zubeidi, Tamara; Pegram, Hannah; Hunter, Theresa; Naegeli, April N; Delbecque, Laure; Jairath, Vipul
• Is Part Of: Crohn's & colitis 360. Volume 2:Issue 2(2020)
• Publication Date: 2020-05-05
• Subjects: Crohn's disease -- qualitative -- disease burden -- remission; Crohn's disease -- Periodicals; Colitis -- Periodicals; 616.344
• DOI: 10.1093/crocol/otaa033
• Languages: English
• ISSNs: 2631-827X

Abstract

Abstract: Background: Disease burden, a definition of remission, and symptoms that drive treatment seeking were explored in a Crohn's disease (CD) population. Methods: A qualitative semistructured interview guide was developed, informed by published literature. Clinicians identified adolescents and adult patients with CD. Face-to-face interviews were audio-recorded and transcribed. Two rounds of interviews were conducted with patients. Transcripts were analyzed using thematic methods facilitated by ATLAS.ti. Results: Twenty-four patients participated in the first round of interviews (n = 16 adults, mean age 50.3 years; n = 8 adolescents, mean age 15.6 years). Abdominal pain (n = 24), urgent bowel movements (n = 24), diarrhea (n = 23), and frequent bowel movements (n = 21) were the most frequently reported symptoms. CD affected patients' physical functioning, daily activities, emotional wellbeing, social functioning, work/education, and relationships. No major difference in disease burden was observed between adolescents and adults. Twenty-three patients (96%) reported they would seek or had sought medical treatment for at least one symptom including abdominal pain (n = 19), diarrhea (n = 12), and blood in stools/rectal bleeding (n = 9). On a 0–10 scale (0 = no symptom and 10 = symptom at its worst possible), most patients (87%, 20/23) answered they would seek/had sought treatment when the symptom's severity was at least 7. In the second round of interviews (n = 6 adults, mean age 51.5 years), 5/6 patients described that they did not require a complete absence of abdominal pain or loose/watery stools to consider their CD to be in remission. Conclusions: CD is associated with substantial disease burden. Worsening of some symptoms drives treatment seeking. To some patients, remission is not defined as a complete absence of symptoms. Lay Summary: Patients with Crohn's disease seek treatment when their gastrointestinal symptoms worsen. Patients associate disease remission with a reduction or improvement in abdominal pain and frequency of bowel movements but may not expect to gain a complete absence of symptoms.