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Original Article Lifestyle restrictions are associated with impaired quality of life but not reduction in relapse in ulcerative colitis
Hajime Yamazaki1,2,orcid, Masakazu Nagahori3orcid, Tadakazu Hisamatsu4orcid, Taku Kobayashi5orcid, Teppei Omori6orcid, Jimmy K. Limdi7,8orcid, John T. McLaughlin7,8orcid, Shu-Chen Wei9orcid, Jovelle Fernandez10orcid, Shunichi Fukuhara1,2,11orcid, Katsuyoshi Matsuoka12orcid

DOI: https://doi.org/10.5217/ir.2024.00199
Published online: May 14, 2025

1Section of Clinical Epidemiology, Department of Community Medicine, Graduate School of Medicine, Kyoto University, Kyoto, Japan

2Center for Innovative Research for Communities and Clinical Excellence (CiRC2LE), Fukushima Medical University, Fukushima, Japan

3Clinical Research Center, Tokyo Medical and Dental University Hospital, Tokyo, Japan

4Department of Gastroenterology and Hepatology, Kyorin University School of Medicine, Tokyo, Japan

5Center for Advanced IBD Research and Treatment, Kitasato University Kitasato Institute Hospital, Tokyo, Japan

6Institute of Gastroenterology, Tokyo Women’s Medical University, Tokyo, Japan

7Department of Gastroenterology, Northern Care Alliance NHS Foundation Trust, Greater Manchester, UK

8Division of Diabetes, Endocrinology & Gastroenterology, Faculty of Biology, Medicine and Health, University of Manchester, Manchester Academic Health Sciences Centre, Manchester, UK

9Department of Internal Medicine, National Taiwan University Hospital, Taipei, Taiwan

10Japan Medical Office, Takeda Pharmaceutical Company Limited, Tokyo, Japan

11Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA

12Division of Gastroenterology and Hepatology, Department of Internal Medicine, Toho University Sakura Medical Center, Sakura, Japan

Correspondence to Hajime Yamazaki, Section of Clinical Epidemiology, Department of Community Medicine, Graduate School of Medicine, Kyoto University, 54 Shogoin-kawahara-cho, Sakyo-ku, Kyoto 606-8507, Japan. E-mail: yamazaki.hajime.7n@kyoto-u.ac.jp
• Received: November 29, 2024   • Revised: February 25, 2025   • Accepted: March 18, 2025

© 2025 Korean Association for the Study of Intestinal Diseases.

This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.

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  • Background/Aims
    Patients with ulcerative colitis (UC) in remission commonly restrict thir lifestyle to prevent relapse; however, the effectiveness and impact on quality of life (QOL) is unclear. This study investigated whether lifestyle restrictions are associated with relapse reduction and assessed their impact on QOL.
  • Methods
    This multicenter, prospective cohort study was conducted in Japan (2018–2021) via the YOURS registry, enrolling patients with UC in clinical remission. Patients were followed for 2 years. A baseline questionnaire evaluated lifestyle restrictions in diet, work/study/housework, and physical exercise. QOL was assessed by Disease Impact Scale every 3 months during the first year of follow-up. Associations of lifestyle restrictions with relapse and QOL were assessed by Cox regression analysis and linear mixed-effects models, respectively.
  • Results
    Among 911 patients in clinical remission for > 90 days, 63% had adopted dietary avoidance; 47%, work/study/housework avoidance; and 8%, physical exercise avoidance. Overall, 216 patients relapsed. Lifestyle restrictions were not associated with reduced risk of relapse (multivariableadjusted hazard ratios [95% confidence interval]: dietary avoidance, 1.08 [0.81–1.44]; and work/study/housework avoidance, 1.14 [0.87–1.50]); physical exercise avoidance was associated with increased relapse (multivariable-adjusted hazard ratio, 1.58; 95% confidence interval, 1.02–2.44). All lifestyle restrictions were associated with impaired QOL (P <0.01).
  • Conclusions
    Lifestyle restrictions were not associated with relapse reduction in patients with UC; however, they were associated with impaired QOL. Clinicians should engage in evidence-based discussions with patients with UC in remission regarding lifestyle restrictions (UMIN Clinical Trials Registry; UMIN000031995).
  • Keywords: Lifestyle restriction; Quality of life; Relapse; Ulcerative colitis
Ulcerative colitis (UC) is a chronic inflammatory disease characterized by recurrent episodes of remission and relapse [1]. Modern treatment paradigms that support achieving clinical and endoscopic remission also emphasize the importance of normalizing quality of life (QOL) as an important long-term goal [2]. Consequently, clinicians and patients may employ lifestyle and behavioral modifications, in addition to pharmacological interventions, to improve QOL [3,4]. A UK-based research priority-setting exercise between patients and healthcare professionals (HCPs) ranked diet as third out of 10 research priorities in inflammatory bowel diseases [5]. Despite this, there is a paucity of evidence-based dietary recommendations, leading to self-prescribed dietary avoidance by patients to prevent relapse [6-10]. Consequently, it is common for patients with UC to restrict their diet and other lifestyle factors with the aim of preventing relapse [11-15].
Previous surveys in the UK and Taiwan have shown that many patients with UC in remission avoid certain food or drinks to prevent relapse, based on their individual experience [11,12,16]. Approximately half of HCPs have recommended avoiding certain dietary components to prevent relapse [17]. However, limited evidence supports the effectiveness of dietary avoidance to prevent relapse. A longitudinal study (n =183) showed a lack of association between dietary avoidance and relapse; notably, however, this study had a relatively small sample size and did not adjust for confounders [9]. Furthermore, patients also restrict other lifestyle factors such as physical exercise, work, study, and housework [14,15,18,19]; however, the effects of these restrictions on disease relapse have not been evaluated.
We conducted a prospective multicenter cohort study over a 2-year period, to evaluate the effect of lifestyle restrictions–including dietary avoidance, physical exercise avoidance, and avoidance of work, study, and housework—on UC relapse and QOL. First, we described both the practices of patients and recommendations of HCPs regarding these lifestyle restrictions. Second, we investigated the association of these lifestyle restrictions with future relapse. Third, we evaluated the association between these lifestyle restrictions and repeated measures of QOL.
1. Study Design
This was a multicenter, prospective cohort study in Japan, conducted between August 2018 and June 2021 using data from our ongoing UC registry, “YOu and Ulcerative colitis: Registry and Social network (YOURS)” (UMIN Clinical Trials Registry; UMIN000031995). Detailed information on the YOURS registry has been described in previous publications [20,21]. Briefly, YOURS is a patient-focused registry, recruiting 2,006 consecutive patients with UC aged ≥ 16 years from 5 academic hospitals The registry aims to study the effect of lifestyle, psychosocial factors, and practice patterns on disease exacerbations and Patient-Reported Outcomes. This study, the first longitudinal analysis from the YOURS registry, has 3 components: (1) a description of lifestyle restrictions (i.e., dietary avoidance, physical exercise avoidance, and work/study/housework avoidance) among patients in remission; (2) a vignette-based illustration (using a case scenario as an example) of the guidance provided by HCPs regarding these lifestyle restrictions; and (3) an investigation into the impact of lifestyle restrictions on relapse prevention and QOL.
2. Ethical Considerations
Ethical approval was obtained from the ethics committees of the investigational sites: Tokyo Medical and Dental University, Medical Hospital (Tokyo, Japan; M2017-327-10); Kitasato University Kitasato Institute Hospital (Tokyo, Japan; 18010); Kyorin University Hospital (Tokyo, Japan; 1096); Tokyo Women’s Medical University Hospital (Tokyo, Japan; 4817); and Toho University Sakura Medical Centre (Chiba, Japan; S18043). This study was conducted in accordance with the Declaration of Helsinki and all applicable Japanese laws and guidelines. Written informed consent was obtained from all patients prior to study enrollment. For participants aged under 20 years, consent was additionally obtained from a parent or legal guardian in accordance with institutional and national guidelines.
3. Patients in Clinical Remission
We included patients with UC in clinical remission for ≥90 days, that is, who have not received induction therapy (steroids, tacrolimus, cyclosporine, newly commenced 5-aminosalicylates/anti-tumor necrosis factor-α/tofacitinib/vedolizumab/ustekinumab, apheresis, or clinical trial-based therapy) or had not changed maintenance therapy. Clinical remission was defined based on the Two-Item Patient-Reported Outcomes (PRO-2) scale as having a stool frequency score of 0 or 1 and a rectal bleeding score of 0 (total PRO-2 score of 0 or 1) [22,23]. We excluded pregnant or lactating women and patients who had a history of colectomy or cancer at baseline.
4. Lifestyle Restrictions
Using a questionnaire, we evaluated dietary avoidance, physical exercise avoidance, and work/study/housework avoidance that were used to prevent relapse (Supplementary Table 1). The questionnaire was originally developed in English through discussion among gastroenterologists from the UK, Taiwan, and Japan. The details of the development process were described in our previous studies in the UK and Taiwan [11,12]. The linguistic validity of the questionnaire was ensured by forward-and-back translations. In the present study, we also added 2 questions about the restrictions on physical exercise and work/study/housework. We evaluated the validity of this questionnaire by comparing the responses with those of validated scales such as the Brief-type self-administered Diet History Questionnaire [24], the International Physical Activity Questionnaire [25], and the Work Productivity and Activity Impairment questionnaire, and confirmed its validity, as shown in Supplementary Table 2 [26].
Details of the questionnaire are shown in Supplementary Table 1. Initially, we evaluated dietary beliefs and relevant information resources among patients with UC. Subsequently, we asked, “Do you avoid certain foods or drinks to prevent a relapse of UC? (Relapse is the presence of rectal bleeding with increased bowel habits.).” We also evaluated the avoidance of each dietary component (e.g., meat, alcohol) and the relevant information resources (e.g., dietary avoidance based on individual experience and avoidance recommended by HCPs) within each dietary category. Regarding physical exercise avoidance, we asked, “Do you avoid physical exercise to prevent a relapse of UC?” For work/study/housework avoidance: “Do you avoid stressful activities (by restricting work, study, housework, etc.) to prevent a relapse of UC?” These questions regarding lifestyle restrictions had 3 possible responses: “Always avoid”, “Sometimes avoid”, and “Do not avoid.” We categorized patients who responded with “Always avoid” or “Sometimes avoid” as “Avoid”; those who selected “Do not avoid” were categorized as “Not avoid.”
5. Clinical Relapse
UC relapse was assessed every 3 months throughout the study period and defined as stool frequency score increase by ≥1 point and rectal bleeding score increase by ≥1 point on the PRO-2 scale (total PRO-2 score ≥2) [22,23]. We asked about the worst symptoms that lasted for ≥3 consecutive days within the intervening 3-month period. The incidence of clinical relapse was evaluated from the day of answering the questionnaire on lifestyle restrictions to either the day of colectomy, withdrawal from the study, or the end of the study period.
6. Quality of Life
Patient QOL was assessed every 3 months (i.e., 4 times) in the first year of observation. We used a validated disease-specific QOL scale: the QOL Disease Impact Scale-1. This scale ranges from 1 (no disturbance) to 5 (extremely disturbed) [27], with higher scores corresponding to worse QOL.
7. Vignette Study for HCPs
Using a questionnaire (Supplementary Table 1), we evaluated the guidance provided by HCPs regarding lifestyle restrictions at the same 5 academic hospitals included in this study. In accordance with the actual condition of the patients in this study, we presented a scenario featuring patients with UC who have been in remission for ≥ 90 days without any change in their medications. Subsequently, we inquired about their lifestyle recommendations, including dietary, physical exercise, and work/study/housework avoidance to prevent relapses. There were 3 possible responses to these questions about lifestyle restrictions: “Recommended to avoid”, “Recommended not to avoid”, and “No recommendation.”
8. Statistical Analysis
In the primary analysis, we used the Cox regression model to estimate hazard ratios (HRs) and their 95% confidence intervals (CIs) for the association between each lifestyle restriction (i.e., dietary, physical exercise, and work/study/housework) and future relapse. The multivariable analyses included adjustments for age, sex, smoking, 5-aminosalicylates, immunomodulators, anti-tumor necrosis factor-α/tofacitinib/vedolizumab, medication adherence (assessed by Adherence Starts with Knowledge 12 scale) [28], relapse within the past year, disease duration, employment status, income (diet limitation due to income), and education. The numbers of patients with missing data were reported.
We conducted 3 sensitivity analyses. First, we used the 3-level categorization (i.e., “Always avoid”, “Sometimes avoid”, and “Do not avoid”) for lifestyle restrictions, instead of the 2-level categorization (i.e., “Avoid” and “Not avoid”). Then, we evaluated the association of lifestyle restrictions with future relapse. Second, instead of investigating participants who reported avoiding at least 1 dietary category, we evaluated dietary avoidance in each dietary category. We analyzed the association between avoidance in each dietary category and future relapse. Third, we focused on dietary avoidance, particularly that based on individual experience and analyzed the association of individual experience-based dietary avoidance with future relapse.
At the secondary analysis, we used mixed-effects linear regression models to estimate regression coefficients (β) and 95% CI for the association between each lifestyle restriction (i.e., dietary, physical exercise, and work/study/housework) and QOL (i.e., pooled QOL Disease Impact Scale scores from 4 time points in the first year of observation). We adjusted the same covariates as the primary analyses. Statistical analyses were performed using SAS (version 9.4, SAS Institute Inc, NC, USA).
1. Patient Characteristics
Of a total of 2,006 patients enrolled in the YOURS registry, 911 patients with UC in clinical remission for >90 days were included in this study (Fig. 1).
The median age of the patients was 44.0 years (interquartile range [IQR], 34–55 years), 54.0% were male, and the median duration of UC from the first diagnosis was 9 years (IQR, 5–15 years) (Table 1).
2. Dietary Belief in Disease Cause and Relapse
Approximately 27% of patients considered diet to be a cause of their UC. This belief was primarily based on individual experience, as reported by 85% of patients. Similarly, 27% believed that a dietary factor had at some time triggered a relapse of their UC. The most frequently identified triggers were fatty foods (60%), spicy foods (45%), and alcohol (42%). Nearly half of patients (45%) believed that diet could trigger a relapse of UC. To prevent UC relapse, 28% of patients avoided eating the same food as the other members of their family, and 19% avoided dining out. Conversely, 18% believed that a specific dietary factor could assist UC relapse prevention. In fact, 14% of patients incorporated specific dietary factors into their diet (e.g., yogurt, vegetables, fermented foods, fruits, and vitamins), and many of them (63%) adopted this behavior based on their own experience. This belief was predominantly based on individual experience, as reported by 63% of these patients. Approximately one quarter of the patients (26%) believed that their recommended diet was the same during both periods of relapse and clinical remission with UC. Only 26% of patients reported finding dietary advice tailored for patients with UC.
3. Lifestyle Restrictions by Patients and Guidance from HCPs
To prevent relapse of UC, 63% of patients avoided certain foods or drinks, 8% avoided physical exercise, and 47% avoided work/study/housework (Fig. 2A). Among the 70 HCPs who responded to the survey, there were 52 physicians, 13 nurses, 3 pharmacists, and 2 dietitians. The proportion of HCPs recommending lifestyle restrictions was similar to that of patients practicing lifestyle restrictions, except for dietary avoidance (Fig. 2A and B).
In the survey of information resources for dietary avoidance, the patients avoided diet primarily based on individual experience (Fig. 3, Supplementary Table 3). A combined restriction of dietary and work/study/housework without physical exercise avoidance was seen in 29.6% of patients, whereas avoidance of all 3 factors was seen in 6.4% of patients (Fig. 4).
4. Association Between Lifestyle Restrictions and Future Relapse
During the median observational period of 692 days (IQR, 449–798 days), the primary analysis recorded 216 relapses, 1 colectomy, and 32 study withdrawals. As shown in Table 2, none of the lifestyle restrictions reduced the risk of relapse (multivariable-adjusted HR [95% CI]: dietary avoidance, 1.08 [0.81–1.44], P=0.62; work/study/housework avoidance, 1.14 [0.87–1.50], P=0.34), while physical exercise avoidance was associated with increased relapse (multivariable-adjusted HR, 1.58; 95% CI, 1.02–2.44; P=0.04).
We conducted 3 sensitivity analyses. First, we used the 3-level categorization (i.e., “Always avoid”, “Sometimes avoid”, and “Do not avoid”) instead of the 2-level categorization (i.e., “Avoid” and “Not avoid”), finding that lifestyle restrictions did not reduce the risk of relapse (Supplementary Table 4). Two other sensitivity analyses focused on dietary avoidance (Supplementary Table 5). We evaluated dietary avoidance across each dietary category; however, we found no significant association with future relapse in any category (all P>0.2). We also found no significant association between individual experience-based dietary avoidance and future relapse (multivariable-adjusted HR, 1.13; 95% CI, 0.86–1.49; P=0.39).
5. Association Between Lifestyle Restrictions and Repeated QOL
A multivariable analysis of lifestyle restrictions and repeated QOL in the first year of observation showed that dietary avoidance (P<0.001), physical exercise avoidance (P<0.001), and work/study/housework avoidance (P=0.008) were associated with impaired QOL (Table 3).
In this 2-year cohort study, nearly half of the patients with UC in clinical remission avoided dietary components or work/study/housework, while a small proportion of the patients avoided physical exercise. The proportion of HCPs recommending these lifestyle restrictions were similar to that of patients practicing these lifestyle restrictions, except for dietary avoidance. Notably, none of the 3 lifestyle restrictions reduced the risk of relapse, and exercise avoidance was even associated with an increased relapse risk. Furthermore, all lifestyle restrictions were associated with impaired QOL.
The primary reason for avoiding certain diets (e.g., spicy food, fatty food, alcohol, carbonated drinks, and dairy products) in the present study was individual experience, which was consistent with our previous cross-sectional surveys in the UK and Taiwan [11,12]. We also found that dietary restriction recommendations from HCPs varied considerably, which is consistent with our earlier national survey of HCPs in the UK [17]. In the present study, we confirmed that this dietary avoidance was not associated with a reduced risk of relapse. This result aligns with that of a small cohort study that did not adjust for confounders [9]. Although dietary avoidance did not contribute to relapse prevention, approximately 20% to 30% of patients in the present study, as well as in our previous surveys in the UK and Taiwan, avoided eating the same food as other family members or avoided dining out to prevent relapse [11,12]. The present study further demonstrated that dietary avoidance was associated with impaired QOL, as measured by a validated QOL scale with 4-time measurement. These findings support current guidelines that discourage non-evidence-based self-directed exclusion diets or specific dietary avoidance for patients with UC in remission [7,8].
Currently, although no evidence suggests that physical exercise leads to adverse outcomes [3], it has been reported that patients with UC limit their physical exercise [14]. Increasing physical exercise and addressing barriers to physical exercise are recommended by an International Organization for Study of Inflammatory Bowel Diseases consensus [3]. Patients with UC and higher exercise levels have been reported to be less likely to experience a relapse, although this association was not statistically significant [29]. Randomized controlled trials have also shown the effect of physical exercise on the prevention of relapse and improvement of QOL [30,31]. However, a recent review has shown that previous research was limited by small sample sizes, insufficient statistical power, and short follow-up periods [32]. Our current study showed that patients who avoided physical exercise with the aim of preventing relapse, paradoxically, had a higher risk of future relapse and impaired QOL. To maintain remission and enhance QOL, HCPs need to discuss the barriers that cause patients with UC to avoid physical exercise.
Patients with UC who avoided work, study, or housework exhibited both decreased work productivity and reduced non-work activity in this study (Supplementary Table 2). Notably, while this avoidance was not associated with relapse prevention, it was associated with impaired QOL. Qualitative studies have reported that patients with UC adapt their lives to continue working by reducing working hours, rearranging working patterns, or even changing jobs [15,33]. It has also been shown that unemployment is associated with lower self-esteem, which is in turn linked to reduced QOL. Work restrictions may similarly lower self-esteem, thereby impairing QOL [34,35]. In a school setting, students with UC are also afraid of relapse, especially during school hours [18]. Even in the home environment, patients with UC encounter difficulties with housework, parenting, and family planning [19]. Patients are reported to identify stress as a primary cause of relapse, whereas healthcare workers viewed the natural progression of the disease as a leading cause of relapse [36]. Healthcare workers should recognize the limitations that patients with UC face in their work, school, and home environments.
We acknowledge some limitations in our study: first, we surveyed individuals in self-reported remission and not in confirmed biochemical or endoscopic remission. This was because the study concerned participants’ perceptions, so self-reported remission was appropriate and may, in fact, represent a strength when assessing patient perception in real-world practice. Second, as an observational study, even with the use of multivariable analyses, unmeasured confounders–especially those related to prior detailed disease exacerbations–cannot be accounted for and may have influenced our results. Third, we could not evaluate whether the impact of work restrictions differs between patients engaged in physically demanding labor and those with less strenuous jobs. Further research is needed on this aspect. Fourth, lifestyle restrictions are diverse and complex, and our questionnaire may not fully capture their intricacies. Finally, we did not exclude participants with concomitant irritable bowel syndrome, although we defined relapse as presence of rectal bleeding with increased bowel habits in our questionnaire. Our purposeful unselective approach is arguably key to our study, as patients’ self-reported symptoms (except bleeding) may frequently be functional rather than inflammatory and need to be understood in context.
This is, to our knowledge, the first longitudinal study to comprehensively evaluate the influence of lifestyle restrictions, such as avoidance of certain diets, physical exercise, work, school, and housework, on relapse and QOL. Additional strengths of this study include a large sample size, consecutive recruitment from the YOURS registry, use of the same questionnaire that has been employed in other countries (e.g., the UK and Taiwan) for comparative purposes, a longitudinal design, inclusion of information on disease duration/medication/socioeconomic status, and the incorporation of repeated QOL measurements using a validated scale.
In conclusion, patients with UC in remission hold strong dietary beliefs and practice dietary avoidance. More than half of the patients avoided a specific diet based on their individual experiences, while the recommendations of HCPs regarding dietary avoidance were not consistent. Notably, dietary avoidance was not associated with a reduced risk of relapse; however, it was associated with impaired QOL. Similarly, other avoidance behaviors (e.g., refraining from physical exercise, work, study, housework, or exposure) were not associated with relapse reduction, but were instead negatively associated with QOL. Notably, avoidance of physical exercise was even associated with an increased risk of relapse. These findings highlight the need for HCPs to engage in evidence-based discussions with patients regarding lifestyle restrictions.

Funding Source

This study was supported by Takeda Pharmaceutical Company Limited.

Conflict of Interest

Yamazaki H reports lecture fees from Janssen Pharmaceutical, Mitsubishi Tanabe Pharma, Kowa, AstraZeneca, Kyorin Pharmaceutical, and Takeda Pharmaceutical; under contracts with Kyoto University, fees for consultation to Yamazaki H were paid to Kyoto University from Takeda Pharmaceutical and Magmitt Pharmaceutical. Nagahori M reports no conflict of interest. Hisamatsu T reports honoraria from EA Pharma, AbbVie GK, Janssen Pharmaceutical, Pfizer, Mitsubishi Tanabe Pharma Corporation, Kyorin Pharmaceutical, JIMRO, Mochida Pharmaceutical, BMS KK, Eli Lilly, and Gilead Sciences; and research grants from Mitsubishi Tanabe Pharma Corporation, EA Pharma, AbbVie, JIMRO, Zeria Pharmaceutical, Kyorin Pharmaceutical, Nippon Kayaku, Takeda Pharmaceutical, Pfizer, Boston Scientific Corporation, and Mochida Pharmaceutical. Kobayashi T has received honoraria from AbbVie, EA Pharma, JIMRO, Takeda Pharmaceutical, Janssen Pharmaceutical, Mitsubishi Tanabe Pharma Corporation, and Pfizer Japan; has received research grants from AbbVie, Alfresa Pharma, Gilead Sciences, Nippon Kayaku, Eli Lilly, Mochida Pharmaceutical, Janssen Pharmaceutical, Pfizer Japan, Takeda Pharmaceutical, BMS, and Google Asia Pacific; scholarship grants from Mitsubishi Tanabe Pharm, Zeria Pharmaceutical, and Nippon Kayaku; and served as an endowed chair of Alfresa Pharma, JIMRO, Mochida Pharmaceutical, Zeria Pharmaceutical, and Miyarisan Pharmaceutical. Omori T reports honoraria from AbbVie. Fernandez J reports stock options with Takeda Pharmaceutical, GlaxoSmithKline, Haleon, Vanguard, MiraiBiotech, and Jovelle Fernandez LLC; and is a board member of Immunorock and was an employee of Takeda Pharmaceutical. Fees for consultation to Fukuhara S were paid to Kyoto University from Takeda Pharmaceutical during the conduct of the study. Matsuoka K reports honoraria from Takeda Pharmaceutical, Mitsubishi Tanabe Pharma, Janssen Pharmaceutical, AbbVie, EA Pharma, Pfizer, Mochida Pharmaceutical, Kyorin Pharmaceutical, Kissei Pharmaceutical, Gilead Sciences, and Eli Lilly; and research grants from Janssen Pharmaceutical. Although Matsuoka K and Wei SC serve on the editorial board of this journal, they had no involvement in the peer review or editorial decision-making process for this manuscript. The other authors have no competing interests to declare.

Data Availability Statement

The datasets, including the redacted study protocol, redacted statistical analysis plan, and individual de-identified participant data supporting the results reported in this article, will be made available within 3 months from initial request to researchers who provide a methodologically sound proposal to the corresponding author. The data will be provided after its deidentification, in compliance with applicable privacy laws, data protection, and requirements for consent and anonymization.

Author Contributions

Conceptualization: Yamazaki H, Hisamatsu T, Kobayashi T, Limdi JK, McLaughlin JT, Wei SC, Fernandez J, Fukuhara S, Matsuoka K. Data curation: Hisamatsu T, Kobayashi T, Fernandez J. Formal analysis: Hisamatsu T, Kobayashi T, Fernandez J. Funding acquisition: Kobayashi T, Fernandez J. Investigation: Nagahori M, Hisamatsu T, Kobayashi T, Omori T, Wei SC, Fernandez J, Matsuoka K. Methodology: Yamazaki H, Nagahori M, Hisamatsu T, Kobayashi T, McLaughlin JT, Fernandez J, Fukuhara S. Project administration: Hisamatsu T, Kobayashi T, Fernandez J. Resources: Kobayashi T, Fernandez J. Software: Kobayashi T. Supervision: Hisamatsu T, Kobayashi T, Fernandez J. Validation: Kobayashi T, Wei SC, Fernandez J. Visualization: Kobayashi T. Writing – original draft: Yamazaki H, Kobayashi T. Writing – review & editing: Yamazaki H, Nagahori M, Hisamatsu T, Kobayashi T, Omori T, Limdi JK, McLaughlin JT, Wei SC, Fernandez J, Fukuhara S, Matsuoka K. Approval of final manuscript: all authors.

Additional Contributions

English editing assistance was provided by Mittal Makhija from and on behalf of MIMS, sponsored by Takeda Pharmaceutical. We thank Toshihiko Takada from Fukushima Medical University for his advice on a previous version of the questionnaire. We are grateful to the Japanese Society for Inflammatory Bowel Disease for their input in the study design.

Supplementary materials are available at the Intestinal Research website (https://www.irjournal.org).

Supplementary Table 1.

Summary of Questionnaire Contents
ir-2024-00199-Supplementary-Table-1.pdf

Supplementary Table 2.

Validation of the Lifestyle Restriction Questionnaire Through Comparison with Established Validated Questionnaires (BDHQ, IPAQ, and WPAI)
ir-2024-00199-Supplementary-Table-2.pdf

Supplementary Table 3.

Information Resources Utilized by Patients for Dietary Avoidance Across Food Groups
ir-2024-00199-Supplementary-Table-3.pdf

Supplementary Table 4.

Association Between Lifestyle Restrictions and Future Relapse Among Patients with Ulcerative Colitis in Clinical Remission: Analysis with 3-Level Categorization
ir-2024-00199-Supplementary-Table-4.pdf

Supplementary Table 5.

Association Between Dietary Avoidance (Across Each Food Category or Based on Individual Experience) and Future Relapse Among Ulcerative Colitis Patients in Clinical Remission
ir-2024-00199-Supplementary-Table-5.pdf
Fig. 1.
Study flow diagram. UC, ulcerative colitis; YOURS, YOu and Ulcerative colitis: Registry and Social network; PRO-2, Two-Item Patient-Reported Outcomes; QDIS-1, QOL disease impact scale-1.
ir-2024-00199f1.jpg
Fig. 2.
Lifestyle restrictions (A) and specific dietary avoidance (B) to prevent a relapse of ulcerative colitis based on 911 patients and 70 healthcare professionals in the same 5 academic hospitals.
ir-2024-00199f2.jpg
Fig. 3.
Information resources for dietary avoidance to prevent a relapse of UC. Among 911 patients in the study, 570 avoided diet to prevent UC relapse. This figure shows the information resources selected by these patients, who could choose multiple options for their responses. IBD, inflammatory bowel disease; UC, ulcerative colitis; CD, Crohn’s disease.
ir-2024-00199f3.jpg
Fig. 4.
Number of patients with ulcerative colitis (UC) and avoidance of all patterns. Of the 874 patients with UC and available data on all relevant lifestyle restrictions, 201 did not avoid dietary products, physical exercise, and work/study/housework.
ir-2024-00199f4.jpg
Table 1.
Baseline Characteristics
Characteristic All patients (n = 911)
Age (yr), median (IQR) 44 (34–55)
Sex, No. (%)
 Male 492 (54.0)
 Female 419 (46.0)
BMI (kg/m2), median (IQR)a 21.7 (20.1–24.2)
Disease duration (yr), median (IQR)a 9 (5–15)
Relapse within the past year, No. (%) 196 (21.5)
Disease extent, No. (%)
 Extensive colitis 498 (54.7)
 Left-sided colitis 225 (24.7)
 Proctitis 161 (17.7)
 Right-sided colitis 11 (1.2)
 Unknown 16 (1.8)
Current medication, No. (%)
 Oral 5-aminosalicylates 795 (87.3)
 Immunomodulators 221 (24.3)
 Biologics (TNF-α inhibitors, vedolizumab), tofacitinib 181 (19.9)
ASK-12, median (IQR)a 31 (27.0–34.5)
Education, No. (%)a
 Graduated from university or college 574 (63.0)
Employment status, No. (%)a
 Full-time 581 (63.8)
 Part-time 123 (13.5)
 Unemployed 205 (22.5)
Living status, No. (%)a
 With family 749 (82.2)
 Alone 144 (15.8)
 With others 15 (1.6)
Limitation of selecting food or drink due to income, No. (%)a 113 (12.4)
Annual income (JPY), No. (%)a
 < 3 million 104 (11.4)
 3 to < 5 million 218 (23.9)
 5 to < 7 million 205 (22.5)
 7 to < 10 million 187 (20.5)
 10 to < 12 million 85 (9.3)
 ≥ 12 million 88 (9.7)

a Missing data: ASK-12 (n=5), BMI (n=13), disease duration (n=5), education (n=1), living status (n=3), employment status (n=2), income with limiting dietary choices (n=1), and annual income (n=24).

IQR, interquartile range; BMI, body mass index; TNF, tumor necrosis factor; ASK-12, Adherence Starts with Knowledge-12; JPY, Japanese yen.

Table 2.
Association Between Lifestyle Restrictions and Future Relapse in Patients with Ulcerative Colitis
Relapse, % (n/N) Crude
 Multivariable adjusted
HR (95% CI) P-value HR (95% CI) P-value
Diet
 Not avoid 24.3 (71/292) Reference Reference
 Avoid 26.2 (145/554) 1.06 (0.80–1.40) 0.71 1.08 (0.81–1.44) 0.62
Physical exercise
 Not avoid 24.1 (195/808) Reference Reference
 Avoid 34.3 (24/70) 1.50 (0.98–2.30) 0.06 1.58 (1.02–2.44) 0.04
Work/study/housework
 Not avoid 23.1 (106/459) Reference Reference
 Avoid 26.9 (113/420) 1.13 (0.87–1.48) 0.35 1.14 (0.87–1.50) 0.34

The multivariable Cox regression models included 12 likely confounders: age, sex, smoking, 5-aminosalicylate, immunomodulators, tumor necrosis factor-α inhibitors/tofacitinib/vedolizumab, medication adherence, relapse within the past year, disease duration, employment status, income, and education. The number of patients analyzed was 846 for diet, 878 for physical exercise, and 879 for work/study/housework, based on available data for all variables included in these multivariable analyses.

HR, hazard ratio; CI, confidence interval.

Table 3.
Association Between Lifestyle Restrictions and Repeatedly Measured QOL in Patients with Ulcerative Colitis
Total Crude
 Multivariable adjusted
β (95% CI) P-value β (95% CI) P-value
Diet
 Not avoid 205 Reference Reference
 Avoid 391 0.26 (0.17–0.35) < 0.001 0.22 (0.13–0.32) < 0.001
Physical exercise
 Not avoid 568 Reference Reference
 Avoid 47 0.35 (0.19–0.51) < 0.001 0.30 (0.14–0.46) < 0.001
Work/study/housework
 Not avoid 317 Reference Reference
 Avoid 298 0.16 (0.08–0.25) < 0.001 0.12 (0.03–0.20) 0.008

QOL was assessed 4 times using the QDIS-1 measure, and a higher QDIS-1 score indicates worse QOL. The baseline standard deviation of the QDIS-1 score in the group not avoiding these lifestyle factors was 0.3 (diet), 0.5 (physical activity), and 0.4 (work/study/housework). The mixed-effects linear regression models included 12 likely confounders: age, sex, smoking, 5-aminosalicylate, immunomodulators, tumor necrosis factor-α inhibitors/tofacitinib/vedolizumab, medication adherence, relapse within the past year, disease duration, employment status, income, and education. The number of patients analyzed was 596 for diet, 615 for physical exercise, and 615 for work/study/housework, based on available data for all variables included in these multivariable analyses.

QOL, quality of life; β, regression coefficient; CI, confidence interval; QDIS-1, quality of life disease impact scale-1.

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      Lifestyle restrictions are associated with impaired quality of life but not reduction in relapse in ulcerative colitis
      Image Image Image Image
      Fig. 1. Study flow diagram. UC, ulcerative colitis; YOURS, YOu and Ulcerative colitis: Registry and Social network; PRO-2, Two-Item Patient-Reported Outcomes; QDIS-1, QOL disease impact scale-1.
      Fig. 2. Lifestyle restrictions (A) and specific dietary avoidance (B) to prevent a relapse of ulcerative colitis based on 911 patients and 70 healthcare professionals in the same 5 academic hospitals.
      Fig. 3. Information resources for dietary avoidance to prevent a relapse of UC. Among 911 patients in the study, 570 avoided diet to prevent UC relapse. This figure shows the information resources selected by these patients, who could choose multiple options for their responses. IBD, inflammatory bowel disease; UC, ulcerative colitis; CD, Crohn’s disease.
      Fig. 4. Number of patients with ulcerative colitis (UC) and avoidance of all patterns. Of the 874 patients with UC and available data on all relevant lifestyle restrictions, 201 did not avoid dietary products, physical exercise, and work/study/housework.

      Fig. 1.

      Fig. 2.

      Fig. 3.

      Fig. 4.

      Lifestyle restrictions are associated with impaired quality of life but not reduction in relapse in ulcerative colitis
      Characteristic All patients (n = 911)
      Age (yr), median (IQR) 44 (34–55)
      Sex, No. (%)
       Male 492 (54.0)
       Female 419 (46.0)
      BMI (kg/m2), median (IQR)a 21.7 (20.1–24.2)
      Disease duration (yr), median (IQR)a 9 (5–15)
      Relapse within the past year, No. (%) 196 (21.5)
      Disease extent, No. (%)
       Extensive colitis 498 (54.7)
       Left-sided colitis 225 (24.7)
       Proctitis 161 (17.7)
       Right-sided colitis 11 (1.2)
       Unknown 16 (1.8)
      Current medication, No. (%)
       Oral 5-aminosalicylates 795 (87.3)
       Immunomodulators 221 (24.3)
       Biologics (TNF-α inhibitors, vedolizumab), tofacitinib 181 (19.9)
      ASK-12, median (IQR)a 31 (27.0–34.5)
      Education, No. (%)a
       Graduated from university or college 574 (63.0)
      Employment status, No. (%)a
       Full-time 581 (63.8)
       Part-time 123 (13.5)
       Unemployed 205 (22.5)
      Living status, No. (%)a
       With family 749 (82.2)
       Alone 144 (15.8)
       With others 15 (1.6)
      Limitation of selecting food or drink due to income, No. (%)a 113 (12.4)
      Annual income (JPY), No. (%)a
       < 3 million 104 (11.4)
       3 to < 5 million 218 (23.9)
       5 to < 7 million 205 (22.5)
       7 to < 10 million 187 (20.5)
       10 to < 12 million 85 (9.3)
       ≥ 12 million 88 (9.7)
      Relapse, % (n/N) Crude
      		 Multivariable adjusted
      HR (95% CI) P-value HR (95% CI) P-value
      Diet
       Not avoid 24.3 (71/292) Reference Reference
       Avoid 26.2 (145/554) 1.06 (0.80–1.40) 0.71 1.08 (0.81–1.44) 0.62
      Physical exercise
       Not avoid 24.1 (195/808) Reference Reference
       Avoid 34.3 (24/70) 1.50 (0.98–2.30) 0.06 1.58 (1.02–2.44) 0.04
      Work/study/housework
       Not avoid 23.1 (106/459) Reference Reference
       Avoid 26.9 (113/420) 1.13 (0.87–1.48) 0.35 1.14 (0.87–1.50) 0.34
      Total Crude
      		 Multivariable adjusted
      β (95% CI) P-value β (95% CI) P-value
      Diet
       Not avoid 205 Reference Reference
       Avoid 391 0.26 (0.17–0.35) < 0.001 0.22 (0.13–0.32) < 0.001
      Physical exercise
       Not avoid 568 Reference Reference
       Avoid 47 0.35 (0.19–0.51) < 0.001 0.30 (0.14–0.46) < 0.001
      Work/study/housework
       Not avoid 317 Reference Reference
       Avoid 298 0.16 (0.08–0.25) < 0.001 0.12 (0.03–0.20) 0.008
      Table 1. Baseline Characteristics

      Missing data: ASK-12 (n=5), BMI (n=13), disease duration (n=5), education (n=1), living status (n=3), employment status (n=2), income with limiting dietary choices (n=1), and annual income (n=24).

      IQR, interquartile range; BMI, body mass index; TNF, tumor necrosis factor; ASK-12, Adherence Starts with Knowledge-12; JPY, Japanese yen.

      Table 2. Association Between Lifestyle Restrictions and Future Relapse in Patients with Ulcerative Colitis

      The multivariable Cox regression models included 12 likely confounders: age, sex, smoking, 5-aminosalicylate, immunomodulators, tumor necrosis factor-α inhibitors/tofacitinib/vedolizumab, medication adherence, relapse within the past year, disease duration, employment status, income, and education. The number of patients analyzed was 846 for diet, 878 for physical exercise, and 879 for work/study/housework, based on available data for all variables included in these multivariable analyses.

      HR, hazard ratio; CI, confidence interval.

      Table 3. Association Between Lifestyle Restrictions and Repeatedly Measured QOL in Patients with Ulcerative Colitis

      QOL was assessed 4 times using the QDIS-1 measure, and a higher QDIS-1 score indicates worse QOL. The baseline standard deviation of the QDIS-1 score in the group not avoiding these lifestyle factors was 0.3 (diet), 0.5 (physical activity), and 0.4 (work/study/housework). The mixed-effects linear regression models included 12 likely confounders: age, sex, smoking, 5-aminosalicylate, immunomodulators, tumor necrosis factor-α inhibitors/tofacitinib/vedolizumab, medication adherence, relapse within the past year, disease duration, employment status, income, and education. The number of patients analyzed was 596 for diet, 615 for physical exercise, and 615 for work/study/housework, based on available data for all variables included in these multivariable analyses.

      QOL, quality of life; β, regression coefficient; CI, confidence interval; QDIS-1, quality of life disease impact scale-1.

      Table 1.

      Table 2.

      Table 3.

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