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. Author manuscript; available in PMC: 2020 Nov 1.
Published in final edited form as: Clin Gastroenterol Hepatol. 2019 Sep 20;18(12):2840–2842. doi: 10.1016/j.cgh.2019.09.020

Information- and Health-care Seeking Behaviors in Patients With Irritable Bowel Syndrome

Andrea Shin *, Sarah Ballou , Michael Camilleri §, Huiping Xu , Anthony Lembo
PMCID: PMC7217611  NIHMSID: NIHMS1580814  PMID: 31546055

Irritable bowel syndrome (IBS) is a common and clinically heterogeneous gastrointestinal disorder that can be divided into 4 subtypes: IBS with constipation (IBS-C), IBS with diarrhea (IBS-D), IBS with mixed bowel habits, and unclassified IBS. IBS decreases quality of life1 and imposes a substantial economic burden on the healthcare system.2 To develop efficient approaches to address the individual needs of IBS patients while minimizing healthcare resource over-utilization, it is important to identify the factors that drive patients to seek care, to clarify the burden associated with distinct IBS subtypes, and to be aware of the resources from which IBS patients seek health-related information. We aimed to compare healthcare and information seeking between individuals with IBS-C and IBS-D.

Methods

Study Cohort

Adults aged 18–100 years were recruited from a national sample to participate in an online consumer survey study between September 14, 2015 and October 21, 2015 to assess healthcare and information seeking. Details of the study design are described elsewhere.3

Statistical Analysis

Associations of healthcare and information seeking with IBS subtype were examined by using multivariate logistic regression, negative binomial regression, and the proportional odds model where appropriate adjusting for relevant covariates (age, sex, race/ethnicity, marital status, education level, employment status, and IBS diagnosed by a doctor).

Results

Healthcare Seeking in Irritable Bowel Syndrome With Constipation and Irritable Bowel Syndrome With Diarrhea

Among 3254 participants, 82% (N = 2674) reported speaking to at least 1 healthcare professional about their symptoms. Women with IBS-D were associated with a decreased odds ratio of seeking care from an obstetrician/gynecologist or a pharmacist than women with IBS-C. Among those who saw at least 1 healthcare professional (N = 2674), there were no significant differences in the number of healthcare professionals ever spoken to. However, IBS-D was associated with a decreased number (8% less) of healthcare professionals spoken to in the past 12 months compared with IBS-C. Comparisons of reasons for which participants waited to seek care revealed that IBS-C participants (16.3%) reported that other health conditions took priority more frequently than IBS-D participants (8.0%). Results are summarized in Table 1.

Table 1.

Summary of Effects of Irritable Bowel Syndrome Subtype on Healthcare and Information Seeking Behaviors Based on Multivariate Analyses

IBS-D vs IBS-Ca
(95% confidence interval)
P value
Types of healthcare professionals consulted
 Primary care physician 1.02 (0.85–1.22) .82
 Gastroenterologist 0.88 (0.75–1.04) .13
 Obstetrician/gynecologist (women only) 0.71 (0.59–0.86) <.001
 Nurse/nurse practitioner 0.97 (0.83–1.13) .66
 Physician’s assistant 0.99 (0.84–1.17) .9
 Pharmacist 0.81 (0.67–1.00) .045
 Proctologist/colorectal surgeon 1.01 (0.79–1.30) .92
 Other 0.89 (0.62–1.27) .51
Number of healthcare professionals ever spoken to 1.07 (0.99–1.15) .1
Number of healthcare professionals spoken to in the past 12 months 0.92 (0.86–0.98) .009
Duration of symptoms before seeing a doctor 0.91 (0.80–1.05) .2
Reason why patient waited to talk to provider
 Symptoms were not important enough 1.04 (0.81–1.32) .78
 Symptoms were severe enough 1.16 (0.98–1.38) .093
 Other health conditions that take priority 0.45 (0.35–0.57) <.001
 Felt I should deal with it on my own 0.90 (0.68–1.20) .48
 Did not think there was anything they could do 1.15 (0.93–1.43) .2
 Too embarrassed 0.93 (0.72–1.20) .59
 Have learned to deal with it on my own 1.25 (0.94–1.66) .13
 Other 1.51 (1.12–2.04) .007
Individuals with whom participants discussed symptoms
 Spouse/partner 1.06 (0.88–1.28) .55
 Significant other/person you are dating 1.22 (0.98–1.53) .077
 Kids 1.40 (1.15–1.71) <.001
 Boss 1.70 (1.17–2.48) .006
 Parents/in-laws 1.46 (1.23–1.73) <.001
 Coworkers 1.33 (1.04–1.71) .023
 Friends 1.24 (1.07–1.44) .005
 Therapist 0.91 (0.68–1.23) .56
 Other 1.15 (0.85–1.54) .37
 No one 0.77 (0.62–0.95) .013
Sources from which participants seek information
 WebMD/Mayo Clinic/Wikipedia/other online sources 1.08 (0.93–1.25) .31
 Google/other search engines 0.94 (0.81–1.08) .38
 Facebook/Twitter/other social networks 0.50 (0.36–0.69) <.001
 TV 0.64 (0.50–0.82) <.001
 Pharmaceutical/healthcare company 0.64 (0.50–0.83) <.001
 Specific product website 0.60 (0.46–0.79) <.001
 Articles in newspapers/magazines 1.09 (0.89–1.33) .42
 Friends 0.88 (0.74–1.05) .16
 Family 0.90 (0.77–1.06) .21
 Your doctor 1.04 (0.88–1.24) .64
 Advocacy group 1.62 (0.96–2.74) .07
 Medical specialty society 1.19 (0.79–1.80) .4
 Other 1.03 (0.70–1.52) .88

IBS-C, irritable bowel syndrome with constipation; IBS-D, irritable bowel syndrome with diarrhea.

a

Effect measures are ratio of means for number of healthcare professionals among patients who have ever seen or spoken to at least 1 healthcare professional and odds ratios for all other outcomes. Associations between variables of interest and IBS subtypes examined by using multivariate logistic regression, negative binomial regression, and the proportional odds model where appropriate adjusting for age, sex, race/ethnicity, marital status, education level, employment status, and IBS diagnosed by a doctor.

Resources and Information Seeking in Irritable Bowel Syndrome With Constipation and Irritable Bowel Syndrome With Diarrhea

Only 15% of respondents had not discussed their gastrointestinal symptoms with anyone. IBS-D participants more frequently discussed their symptoms with others than IBS-C participants. Among those who had spoken to someone other than a doctor (N = 2757), 59% (N = 1625) reported receiving advice for their symptoms, and 90% (N = 1465) of those receiving advice reported following it. Univariate analyses revealed significant differences in the proportion of individuals with IBS-C vs IBS-D who received advice (63.1% IBS-C, 56.8% IBS-D; P < .001) and followed advice (91.6% IBS-C, 88.6% IBS-D; P = .048). Overall, 67.7% reported seeking information on IBS from their doctor, 64.5% from online sources, and 45.5% from Google or other search engines. IBS-C participants more frequently used social media networks, television, pharmaceutical or healthcare companies, and product websites than IBS-D participants (Table 1).

Discussion

In this large nationwide survey study, we found that IBS-C participants were more likely to discuss symptoms with an obstetrician/gynecologist than IBS-D participants. This association may be due to previously described relationships between chronic pelvic pain,4 dyssynergic defecation,5 or pelvic floor–related symptoms6 and constipation. IBS-C participants were less likely to discuss symptoms with other individuals within their social networks than those with IBS-D, suggesting that IBS-C may often be a private and isolating experience. IBS-C participants also reported speaking to a higher number of healthcare professionals in the past 12 months, and they more frequently reported that other health conditions took priority. Although the reasons for these observations are unclear, it is possible that IBS-C patients may exhibit a higher frequency of care-seeking within defined time periods as previously reported by others7 and that symptoms of constipation could be a surrogate for poorer health as suggested in another population-based study.8

Study limitations include the possibility of recall and responder bias and the inability to confirm diagnoses by review of the medical records or by physician assessments. This study was conducted within the United States, and participants were recruited from all 50 states to ensure individuals from all regions had an equal chance of being invited to participate. However, the study sample was not nationally representative, and results may not be generalizable to other regions of the world.

In summary, study findings suggest that patient attitudes toward healthcare and knowledge gathering differ by IBS subtype. Further studies are required to verify these potential associations because recognizing these differences will be important in addressing the unique needs of IBS patients and reducing the associated burden of illness.

Funding

Commissioned by the American Gastroenterological Association and conducted with the financial support of Ironwood Pharmaceuticals, Inc and Allergan plc.

Abbreviations used in this paper:

IBS

irritable bowel syndrome

IBS-C

irritable bowel syndrome with constipation

IBS-D

irritable bowel syndrome with diarrhea

Footnotes

Conflicts of interest

This author discloses the following: AL serves as a consultant for Ironwood Pharmaceuticals, Takeda, and Shire IM Health. The remaining authors disclose no conflicts.

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