The BURDEN IBS-C Study (Better Understanding and Recognition of the Disconnects, Experiences, and Needs of Patients With Irritable Bowel Syndrome With Constipation)

Abstract

Introduction: Irritable bowel syndrome with constipation (IBS-C) is a common gastrointestinal disorder, with limited literature on patients' experiences. The BURDEN IBS-C Study was designed to develop a better understanding of the experiences, attitudes, and unmet needs of patients with IBS-C and to assess the understandings of the healthcare professionals (HCPs) who treat these patients. Methods: BURDEN IBS-C utilized proprietary databases to identify IBS-C patients, who then participated in an author-developed, IRB-approved online survey. HCPs who treat IBS-C patients were recruited and participated in a separate online survey. Results: Over 1300 IBS-C patients completed the survey (mean age 46 yrs; 73% female; 65% white). Patients most commonly reported feeling frustrated (43%), accepting (39%), stressed (28%), and self-conscious (22%) regarding their IBS-C, with 60% describing symptoms as somewhat to extremely bothersome. HCPs (N=331) agreed that patients were frustrated (76%) and stressed (65%); however, HCPs were less likely to recognize patients are accepting (13%) of IBS-C (vs 39% of patients) and are more likely to believe patients are obsessed with symptoms (48% vs 8% of patients). On average, productivity (work/school) was impacted 4 days/month, with absenteeism occurring ˜1.5 days/month. Personal activity was impacted 3 days/month. Satisfaction regarding prescription (Rx) IBS-C treatments was assessed. Non-Rx IBS-C treatments were being used by 76% of patients, with only 9% of patients currently taking an Rx treatment for their IBS-C symptoms. Of patients currently using an Rx IBS-C treatment, 78% were not completely satisfied, primarily due to lack of efficacy (51%). Symptoms experienced despite Rx treatment included bloating/distension (57%), abdominal discomfort (43%), hard/lumpy stools (34%), and feeling of incomplete evacuation (31%). Only 21% of HCPs were satisfied or completely satisfied with current Rx IBS-C treatments, citing inadequate efficacy (55%) and diarrhea (41%) as challenges most frequently experienced in treating IBS-C. Conclusion: BURDEN IBS-C confirmed the physical, psychosocial, and clinical impact of IBS-C, indicating that IBS-C has a substantial burden on quality of life. Patients and HCPs felt current treatments were not sufficient in addressing IBS-C symptomatology. Attitudinal disconnects, namely symptom obsession and disease acceptance, were uncovered regarding the impact and experience of IBS-C.