Of the 29,665 clicks on the patient questionnaire link, 27,709 panelists completed the screening test, with 1311 panelists qualifying for and completing the survey. Most respondents were female (73%), were Caucasian (non-Hispanic; 65%), and had at least a high school education (95%) (Table 1). The mean age of respondents was 46 years, with a mean age of symptom onset of 44 years. In addition, the majority of respondents (71%) reported that they had been diagnosed by an HCP, with the remainder (29%) not receiving a formal diagnosis but rather fitting the Rome IV criteria for IBS-C based on responses to the screening questionnaire (undiagnosed respondents).
The HCP questionnaire was completed by 331 HCPs (155 GEs, 76 PCPs, 50 NPs, and 50 PAs). The majority of HCPs were male (63%), had been in clinical practice for an average of 17.5 years, and spent an average of 96.8% of their time in direct patient care (Table 2).
Burden of IBS-C
IBS-C respondents primarily reported negative emotive terms when describing how they felt about their IBS-C and its symptoms (Table 3). Most commonly, IBS-C respondents reported feeling frustrated and stressed regarding their IBS-C; however, nearly 40% of respondents reported that they were accepting of IBS-C as part of their daily life. This trend was similar between the diagnosed and undiagnosed groups, with the exceptions that more undiagnosed respondents reported feeling fine, no big deal and more diagnosed patients reported feeling stressed. HCPs agreed that patients were frustrated and stressed, but HCPs were less likely to recognize that patients had become accepting of their IBS-C and were more likely to believe patients were obsessed with symptoms. Although 20% of the IBS-C respondents thought they were in control of their IBS-C, only 6% of HCPs thought their typical IBS-C patient was in control of their symptoms. Of the total IBS-C respondent population, 59% described their symptoms as somewhat to extremely bothersome. As expected, diagnosed patients more than undiagnosed respondents reported their symptoms as somewhat to extremely bothersome (64% and 52%, respectively).
About half of respondents reported that their productivity (work/school) and/or personal activity (social events/hobbies) was impacted by IBS-C symptoms for at least 1 day in a typical month (Fig. 1). Diagnosed patients reported that their productivity and personal activity was impacted 5 and 4 days/month, respectively. These values increased to 8 and 7 days, respectively, in those who reported at least 1 day/month impacted. Undiagnosed respondents reported that their productivity and personal activity was impacted 3 and 2 days/month, respectively. These values increased to 5 and 4 days/month, respectively, in those who reported at least 1 day/month impacted. HCPs estimated averages of 9 days/month and 4 days/month for productivity and personal activity impairment, respectively. In all, 13% of respondents reported that their IBS-C symptoms caused them to miss at least 1 day of work or school in a typical month. In addition, 13% of respondents indicated they had been to the emergency department at least once in the past year for their constipation symptoms, with 20% of diagnosed and 6% undiagnosed respondents indicating at least 1 visit. HCPs reported that a similar percentage of their patients visited the emergency department for their IBS-C symptoms, with similar rates noted across HCP type (range 16–21%), which aligned with what patients reported.
IBS-C Management Pathway
Respondents reported experiencing multiple stool and abdominal symptoms at the onset of their IBS-C (Table 4), with diagnosed patients reporting being more symptomatic than undiagnosed respondents (mean of 6.0 symptoms vs 4.6 symptoms, respectively). As expected, the majority of patients first experienced abdominal symptoms (including discomfort, bloating/distension, and pain), with most patients also experiencing difficulty with bowel movements. The largest differences, favoring diagnosed over undiagnosed respondents, were for the symptoms of abdominal bloating/distension (difference, 17%) and abdominal discomfort (difference, 15%).
All diagnosed patients had consulted an HCP regarding their symptoms; however, 61% of undiagnosed respondents had never discussed their symptoms with an HCP, including pharmacists. For those who consulted an HCP, the symptoms most commonly reported to have led to a discussion with an HCP were abdominal pain/discomfort (68%), difficulty with bowel movements (44%), and abdominal bloating/distension (34%). More diagnosed respondents than undiagnosed respondents indicated difficulty with bowel movements as one of the trigger symptoms (46% vs 33%, respectively). Of respondents indicating that two or more symptoms led to an HCP discussion, the trigger symptom was most commonly abdominal pain (28%).
Prior to reaching out to their HCP, IBS-C sufferers mostly tried fiber, general dietary changes/home remedies, stool softeners, and increased exercise (Table 5). Of note, general dietary changes/home remedies, and increased exercise were also the recommendations that respondents indicated their HCP made during the first discussion for treatment considerations (Table 5). In addition, about a quarter of the diagnosed respondents initially received a recommendation of probiotics/prebiotics (24%) and/or prescription treatment (22%) by their HCP.
In terms of current treatment, non-prescription IBS-C treatments were being used by 76% of respondents (diagnosed, 79%; undiagnosed, 71%), with only 12% of respondents currently taking a prescription treatment for their IBS-C symptoms (not mutually exclusive groups), despite 22% of respondents reporting an initial recommendation for a prescription treatment. Interestingly, 21% of respondents with IBS-C (diagnosed, 18%; undiagnosed, 26%) reported that they were not currently using any treatment for their constipation symptoms. Of those using over-the-counter (OTC) treatments for their IBS-C, only about one-third (36%) was satisfied or completely satisfied with treatment (diagnosed, 37%; undiagnosed, 32%). When describing their experience with OTC treatments, respondents primarily indicated that: their bowel movements were unpredictable (39%), at least 1 day/week was dedicated to using their OTC laxative (33%), and the laxative caused gassiness (26%) or diarrhea (22%).
Patient Experience with Prescription IBS-C Treatments
Of past and current users of branded prescription IBS-C treatment available at the time the study was conducted (linaclotide or lubiprostone), 37% reported being satisfied or completely satisfied, resulting in 63% of IBS-C patients potentially seeking new treatment options (Fig. 2). The primary reasons for dissatisfaction were issues with efficacy (55%) and side effects (39%), with 23% of patients specifically identifying diarrhea as the reason for their dissatisfaction.
Despite taking a prescription IBS-C treatment, 77% of patients still experienced residual abdominal- and stool-related symptoms (Table 6). Of these, abdominal bloating/distension was the most frequent residual symptom, followed by abdominal discomfort, suggesting that prescription treatments available at the time of this study may be effective at reducing abdominal pain, but may be less effective in reducing other common abdominal symptoms. Respondents also reported residual stool symptoms, such as hard, lumpy, or pebble-like stools and feeling of incomplete bowel movements.
Challenges in Managing IBS-C
HCPs experience many challenges with managing IBS-C symptoms that varied according to HCP type (Table 7). They reported inadequate efficacy (55%) and patient adherence/compliance (58%) as the most common challenges, with NPs and PAs reporting the highest levels of patient adherence/compliance challenges. Only 21% of HCPs were satisfied or completely satisfied with prescription IBS-C treatments available at the time of this study, citing, in addition to inadequate efficacy reported above, the management of treatment-related diarrhea (41%) as a challenge most frequently experienced in treating IBS-C. Of the HCPs, 89% did not agree with the statement that diarrhea is an acceptable outcome of IBS-C treatment. Only 16% of HCPs agreed that diarrhea is a sign that the IBS-C treatment is working, comprising 25, 13, 8, and 4% of GEs, PCPs, NPs, and PAs, respectively, with 77% of patients who experienced residual diarrhea not agreeing with the statement that diarrhea is an acceptable outcome of taking a medication to relieve symptoms of constipation. Only 22% of patients agreed that diarrhea is a sign that their IBS-C medication(s) is/are working.
HCPs estimated that 38% of their patients using prescription IBS-C treatments take treatment holidays (i.e., stop taking their prescription treatment for a period of time) without being instructed to do so, with similar estimates across HCP type. Of IBS-C patients taking a prescription treatment, 67% indicated having stopped taking their treatment at least once without HCP instruction, with the most common reason being that they forgot to take the medication (46%). Other common reasons included “I could not take the risk of having diarrhea” (30%) and “I usually plan taking my medication around when I want/need to have bowel movement” (30%). The most common reasons indicated by HCPs for patients taking a prescription treatment holiday included: patients want to try managing their symptoms without medication (64%), patients cannot afford medication (55%), patients experience side effects (53%), patients feel they no longer need a medication when their symptoms of constipation appear to be under control (53%), patients forget to take medication (50%), and patients don’t want to take a risk of having diarrhea (46%).