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      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

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          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.

          Methods

          The 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).

          Results

          Most 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%).

          Conclusion

          BURDEN-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.

          Funding

          Synergy Pharmaceuticals Inc.

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          Most cited references11

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          Epidemiology of constipation in North America: a systematic review.

          The aim of this study was to systematically review the published literature regarding prevalence, risk factors, incidence, natural history, and the effect on quality of life of constipation in North America. A computer-assisted search of MEDLINE, EMBASE, and Current Contents databases was performed independently by two investigators. Study selection criteria included the following: (1) North American population-based sample of adults with constipation; (2) publication in full manuscript form in English; and (3) report on the prevalence, incidence, and natural history of constipation or impact of constipation on quality of life. Eligible articles were reviewed in a duplicate, independent manner. Data extracted were compiled in tables and presented in descriptive form. The estimates of the prevalence of constipation in North America ranged from 1.9% to 27.2%, with most estimates from 12% to 19%. Prevalence estimates by gender support a female-to-male ratio of 2.2:1. Constipation appears to increase with increasing age, particularly after age 65. No true population-based incidence studies or natural history studies were identified. In one cohort, 89% of patients with constipation still reported constipation at 14.7 months follow-up. From limited data, quality of life appears to be diminished by constipation, but the clinical significance of this is unclear. Constipation is very common, as approximately 63 million people in North America meet the Rome II criteria for constipation. Minimal data are available regarding incidence, natural history, and quality of life in patients with constipation. Effort should be expended toward the study of these topics, particularly in the elderly, who are disproportionately affected by this condition.
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            Chronic constipation: a survey of the patient perspective.

            Constipation is a common, often chronic, gastrointestinal motility disorder characterized by such symptoms as straining, hard stool, and infrequent defecation. Published literature is limited regarding symptom prevalence, healthcare-seeking behaviour, and patient satisfaction with traditional therapies for chronic constipation. To assess the prevalence of chronic constipation among a random sample of Americans, to identify the frequency, severity and bothersomeness of their symptoms, and to assess satisfaction levels with traditional treatments. All members (N = 37,004) of the Knowledge Networks Panel, representative of the US population, participated in a web-based survey. Eligibility was established using a six-question screener. Of the 24,090 panellists consenting to participate, 557 met eligibility requirements and took the 45-question survey. The most prevalent symptom was straining (79%). Hard stool and straining were the top two severe symptoms, and bloating, straining and hard stool were the top three bothersome symptoms. Symptoms affected quality of life of more than half (52%) the respondents. Among those who worked or went to school, 12% experienced reduced productivity and a mean of 2.4 days of absence in the month before the survey. Most respondents had used (96%) or were using (72%) constipation relief therapy; however, nearly half (47%) were not completely satisfied, mainly because of efficacy (82%) and safety (16%) concerns. Chronic constipation is common. Individual symptoms are often severe and bothersome, and many patients are dissatisfied with traditional treatment options, primarily because of lack of efficacy.
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              An epidemiological survey of constipation in canada: definitions, rates, demographics, and predictors of health care seeking.

              The prevalence of functional constipation is highly variable among epidemiological surveys and may relate to the definitions applied. We estimated the population prevalence of self-reported, Rome I-defined, and Rome II-defined constipation in Canada and determined the variables that best predicted health care seeking. A research firm was employed to conduct a random digit dial national survey, inviting household members at least 18 yr of age to participate in a study assessing personal health issues. The sample was stratified to ensure that each region of Canada was represented. Data collection involved three stages: 1) recruitment of participants by phone, 2) mailing of the questionnaire, and 3) data retrieval through a follow-up phone call. The Rome II questionnaire was used to derive the prevalence of functional constipation using both Rome I and Rome II criteria. Of the 1149 participants, 27.2% self-reported constipation within the past 3 months, and 16.7% and 14.9% had functional constipation according to Rome I and II, criteria, respectively. For all three definitions, the rate for women was close to twice that for men. Approximately 34% of those with self-reported constipation had visited a physician for it, versus 26.3% of Rome II subjects. In a regression model, subjects self-reporting in the past 3 months were more likely to have seen a doctor for their constipation (odds ratio 2.47, p < 0.01) and significantly more women than men (35.6% vs 19.5%, p < 0.05). Functional constipation and related health care seeking are common in the Canadian population and are strongly determined by the definition used. The Rome II criteria for this disorder seem to be satisfactory, but modifications may be considered to allow for constipated subjects taking laxatives and to increase the number of qualifying symptoms.
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                Author and article information

                Contributors
                equigley@houstonmethodist.org
                Journal
                Adv Ther
                Adv Ther
                Advances in Therapy
                Springer Healthcare (Cheshire )
                0741-238X
                1865-8652
                6 November 2017
                6 November 2017
                2017
                : 34
                : 12
                : 2661-2673
                Affiliations
                [1 ]ISNI 0000 0000 8875 6339, GRID grid.417468.8, Mayo Clinic, ; Scottsdale, AZ USA
                [2 ]ISNI 0000000122986657, GRID grid.34477.33, University of Washington, ; Seattle, WA USA
                [3 ]Mount Sinai GI, New York, NY USA
                [4 ]GRID grid.423316.1, Synergy Pharmaceuticals Inc, ; New York, NY USA
                [5 ]ISNI 0000 0004 0445 0041, GRID grid.63368.38, Houston Methodist Hospital, ; Houston, TX USA
                Article
                633
                10.1007/s12325-017-0633-5
                5709448
                29110286
                a93c5c1a-8afc-4bc7-bad4-9480132325fd
                © The Author(s) 2017

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License (http://creativecommons.org/licenses/by-nc/4.0/), which permits any noncommercial use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

                History
                : 21 July 2017
                Funding
                Funded by: Synergy Pharmaceuticals Inc
                Categories
                Original Research
                Custom metadata
                © Springer Healthcare Ltd., part of Springer Nature 2017

                chronic idiopathic constipation,functional constipation,gastroenterology,quality of life,survey

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