The Better Understanding and Recognition of the Disconnects, Experiences, and Needs of Patients with Chronic Idiopathic Constipation (BURDEN-CIC) Study: Results of an Online Questionnaire

Abstract

Introduction There is limited literature comparing the experiences and attitudes of patients with chronic idiopathic constipation (CIC) to those of healthcare professionals (HCPs) treating CIC patients. The BURDEN-CIC study was conducted to better understand the experiences and ongoing needs of CIC patients and to assess their alignment versus disconnection with the perceptions and needs of HCPs who treat CIC patients.MethodsThe BURDEN-CIC study was an author-developed, online questionnaire that used KnowledgePanel® to survey individuals with CIC (n = 1223). HCPs who treat CIC patients were recruited separately and participated in a complementary online questionnaire (n = 331).ResultsMost patients had used (58%) or were using (51%) over-the-counter treatments for their CIC, with only 16% currently on prescription therapy. More than half (59%) of current CIC prescription users were not satisfied/completely satisfied with their current chronic treatment. Many patients (42%) felt frustrated regarding their CIC, and a similar percentage (40%) expressed acceptance that CIC was part of their daily life. The majority of HCPs agreed that CIC patients were frustrated (72%), stressed (50%), or fed up (43%) with current treatment options but were relatively unaware (21%) that patients were accepting of their CIC. HCPs reported the greatest challenges in treating CIC patients as response rates to current therapies (55%), treatment adherence (55%), management of treatment-related diarrhea (34%), and lack of treatment options (34%).ConclusionBURDEN-CIC identified that many patients and HCPs are frustrated and not satisfied with current CIC treatments due to lack of efficacy and side effects, such as diarrhea. The survey identified that many patients are “accepting” of their disease, potentially compromising treatment outcomes. More dialogue is needed between HCPs and CIC patients, especially regarding management of treatment expectations and side effects. Further, additional treatment options would be useful for both patients and HCPs.FundingSynergy Pharmaceuticals Inc.

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

“…This attitudinal disconnect may be a problem for patients in achieving optimal care and can result in patients searching for an HCP who better understands their needs. This difference in perception was also noted between HCPs and patients with CIC in the BURDEN-CIC study [5]. GE gastroenterologist, IBS-C irritable bowel syndrome with constipation, NP nurse practitioner, PA physician assistant, PCP primary care physician…”

“…More than twice as many IBS-C patients reported residual abdominal bloating/ distension than did CIC patients. In addition, more IBS-C patients reported experiencing residual hard, lumpy, or pebble-like stools than did CIC patients (34% vs 21%), yet fewer IBS-C patients experienced difficulty with bowel movements (23% vs 35%) [5]. Abdominal bloating was associated with worse quality of life, treatment satisfaction, and treatment responsiveness [17]; therefore, the finding that more than half of patients still experienced abdominal bloating/distension despite current treatment emphasizes the importance and difficulty of addressing all of the symptoms in this heterogeneous disorder.…”

“…Both IBS-C and CIC sufferers reported similar assessments of their feelings toward their condition, its negative impact on productivity and personal activities, and their dissatisfaction with available treatments. IBS-C respondents tended to report more abdominal symptoms when describing the onset of disease, while CIC respondents more frequently reported stool symptoms [5], supporting the concept that these disorders exist on a continuum of functional bowel disorders, primarily defined by the presence or absence of abdominal pain [2]. Though IBS-C is a heterogeneous disorder that can overlap with CIC, respondents were aligned in their general dissatisfaction of currently available treatments, and most HCPs also felt that more effective and tolerable treatments are needed.…”

“…The methodology for the BURDEN IBS-C study was nearly identical to that of the BURDEN-CIC study [5], with the only difference being the population disease state (i.e., IBS-C or CIC) studied. The BURDEN IBS-C study utilized 2 author-developed online questionnaires-one for adults with IBS-C and another for HCPs who treat patients with IBS-C-in order to evaluate the impact of IBS-C on quality of life (QOL) and daily activities, as well as treatment experience and satisfaction, in a representative sample of the US population.…”

“…The current study, BURDEN IBS-C (Better Understanding and Recognition of the Disconnects, Experiences, and Needs of Patients with Irritable Bowel Syndrome with Constipation), is the companion of the BURDEN-CIC study that explored these issues among subjects with chronic idiopathic constipation (CIC) and that was recently published [5]. The BURDEN IBS-C study was designed to develop a better understanding of the experiences, attitudes, and unmet needs of individuals with IBS-C and to assess the understandings of the HCPs who treat these patients.…”