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. 2020 Feb;5(1):27-35.
doi: 10.1159/000505092. Epub 2020 Feb 3.

Ulcerative Colitis: Disease Burden, Impact on Daily Life, and Reluctance to Consult Medical Professionals: Results from a Japanese Internet Survey

Toshifumi Hibi  1 , Toyomi Ishibashi  1 , Yuka Ikenoue  2 , Ryoichi Yoshihara  3 , Akiko Nihei  4 , Taku Kobayashi  1
Affiliations

Ulcerative Colitis: Disease Burden, Impact on Daily Life, and Reluctance to Consult Medical Professionals: Results from a Japanese Internet Survey

Toshifumi Hibi et al. Inflamm Intest Dis. 2020 Feb.

Abstract

Background and aim: The prevalence of ulcerative colitis has increased in Asian populations in recent years. This Japanese internet survey investigated the symptoms, impact, and treatment of ulcerative colitis, and communication between patients and medical professionals.

Methods: This was a non-interventional analysis of responses from participants with ulcerative colitis who had regularly visited medical providers for their disease in the past year.

Results: In 501 evaluable participants, the mean age was 39.8 years and mean disease duration was 7.6 years. Ulcerative colitis had a "significant impact" on daily life in 43.5% of participants who experienced bowel urgency and 48.6% who experienced bowel incontinence. Although the prevalence of bowel urgency and bowel incontinence was associated with higher stool frequency and rectal bleeding scores (p value for trend <0.0001), they still existed even in patients without frequent stools or rectal bleeding. Around 30% of participants hesitated to discuss symptoms such as bowel incontinence with a medical professional. Approximately three-quarters preferred to use websites for medical information. Most participants (78.0%) had used topical treatments. However, 25.7% were hesitant to use such treatments due to concerns about discomfort (48.1%) and administration difficulty (47.3%).

Conclusions: Ulcerative colitis significantly affects daily life, largely due to symptoms such as bowel urgency and bowel incontinence. Despite desiring to improve bowel incontinence, patients are embarrassed to consult physicians or nurses. Therefore, medical professionals should make an active effort to draw out patients' individual concerns, including symptoms that patients may not initially feel able to talk about openly.

Keywords: Bowel incontinence; Bowel urgency; Rectal bleeding; Stool frequency; Ulcerative colitis.

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Conflict of interest statement

T.K., T.I., and T.H. were paid an advisory fee for this survey. T.K. also reports lecture fees from Abbvie GK, Alfresa Pharma Corporation, Takeda Pharmaceutical Co., Ltd., Mitsubishi Tanabe Pharma Corporation, Pfizer Japan Inc., Mochida Pharmaceutical Co., Ltd., and Janssen Pharmaceutical K.K., and research grants from Otsuka Holdings Co., Ltd., JIMRO Co., Ltd., EA Pharma Co., Ltd., Abbvie GK, Zeria Pharmaceutical Co., Ltd., and Nippon Kayaku, Co., Ltd. T.H. also reports lecture fees from Mitsubishi Tanabe Pharma Corporation, Takeda Pharmaceutical Co., Ltd., Aspen Japan Co., Ltd., and Janssen Pharmaceutical K.K., and research grants from Mochida Pharmaceutical Co., Ltd., Zeria Pharmaceutical Co., Ltd., EA Pharma Co., Ltd., Nippon Kayaku, Co., Ltd., Otsuka Holdings Co., Ltd., JIMRO Co., Ltd., and Abbvie GK. A.N. has no conflicts of interest to declare. Y.I. is an employee of EA Pharma Co., Ltd., and R.Y. is an employee of Kissei Pharmaceutical Co., Ltd.

Figures

Fig. 1
Fig. 1
Incidence of bowel urgency or bowel incontinence (in the past 2 weeks). a Bowel urgency. Q13: How frequently did you feel anxious about not making it to a toilet in time in the past 2 weeks? b Bowel incontinence. Q14: How frequently did you experience underwear soiling in the past 2 weeks? (n = 501).
Fig. 2
Fig. 2
Frequency of bowel urgency and bowel incontinence according to (a) stool frequency scorea, b and (b) rectal bleeding scorea, c. a Trend p < 0.0001, calculated using the Cochran-Armitage test. b(n = 473), excluding participants who had surgery. c (n = 458), excluding participants who had surgery and who answered “unknown” for rectal bleeding.
Fig. 3
Fig. 3
Participants who reported embarrassment about discussing symptoms with medical professionals. a Embarrassment about symptoms according to those who experienced each symptom (Q25 × Q16). b Alternative sources of information (Q26). c The proportion of participants who answered that they found it difficult to consult about bowel incontinence by age (Q25 × Q16 × Q1)a. aTrend p = 0.053 calculated using the Cochrane-Armitage test.
See this image and copyright information in PMC

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