Better Understanding and Recognition of the Disconnects, Experiences, and Needs of Patients with Irritable Bowel Syndrome with Constipation (BURDEN IBS-C) Study: Results of an Online Questionnaire

Abstract

Introduction: The BURDEN IBS-C study was conducted to better understand the experiences, attitudes, and unmet needs of sufferers of irritable bowel syndrome with constipation (IBS-C) in comparison to the perceptions and challenges of healthcare providers (HCPs) who treat IBS-C patients. Methods: This was an author-developed, online questionnaire using KnowledgePanel Ò to survey individuals with IBS-C (N = 1311). HCPs participated in a complementary online questionnaire and were recruited separately (N = 331).

Constipation in CKD

“…24,25,29,30 Physicians often prefer using objective and physical factors when defining constipation, whereas patient dissatisfaction may not necessarily be related to these factors. 31 In this regard, these diagnostic tools, designed based on patients' subjective symptoms, may overcome the inherent differences in perception of constipation between physicians and patients and thus are recommended to assess constipation for both clinical practice and research purposes. 28 In fact, a recent cross-sectional study reported that more than half of patients with CKD (n ¼ 180) who had less frequent bowel movements (defined as bowel frequency of once every 4 to 6 days per week or less) with abnormal stool form and gastrointestinal symptom(s) perceived their bowel health as "normal" or "more normal than abnormal."…”

Comprehensive assessment of patients with irritable bowel syndrome with constipation and chronic idiopathic constipation using deterministically linked administrative claims and patient-reported data: the Chronic Constipation and IBS-C Treatment and Outcomes Real-World Research Platform (CONTOR)

“…The substantial patient retention achieved in CONTOR not only highlights the success of combining mixed-mode surveys with pre-paid incentives and post-paid payments to engage participants in a longitudinal observational study, but may also illustrate patients' desire to share their experiences of living with IBS-C and CIC. Patients may find these conditions difficult to discuss; in previous survey-based analyses, feelings of embarrassment and self-consciousness related to IBS-C/CIC were commonly reported, particularly by those with more severe disease 9,10 . CONTOR participants' sustained commitment to the study suggests they found it important and/or fulfilling to communicate the impact of their symptoms and treatments on their lives.…”

“…CONTOR participants' sustained commitment to the study suggests they found it important and/or fulfilling to communicate the impact of their symptoms and treatments on their lives. Opportunities such as CONTOR that allow patients to safely share their disease journey may empower them to engage in this type of dialogue with their healthcare providers and help improve the patient experience with treatment for IBS-C/CIC 9,10 .…”

“…Treatment dissatisfaction is a common theme in the IBS-C/CIC literature; nearly without exception, studies conducted among patients with these conditions have shown that many suffer persistent abdominal symptoms despite active treatment 9,10,22-24 and most are not satisfied with their treatment regimen 9,10,18 . For example, only about 35% to 40% of patients with IBS-C and CIC reported satisfaction with their current treatment in 2 recent questionnaire-based studies 9,10 . Notably, however, higher proportions of CONTOR patients treated with linaclotide or lubiprostone reported being satisfied with their treatment (about 65% and 58%, respectively), suggesting that patients may benefit from access to these prescription medications.…”

“…Despite the prevalence of IBS-C and CIC, their true impact is difficult to assess because patients frequently have symptoms for a long time prior to seeking medical assistance, potentially due in part to embarrassment or self-consciousness associated with these conditions 9,10 . In addition, common treatments include over-the-counter (OTC) medications and home remedies, which are not captured in most existing standardized data sources.…”