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Patient Reported Outcomes (PROs) in Inflammatory Bowel Disease (IBD) Around the World

A special issue of Journal of Clinical Medicine (ISSN 2077-0383). This special issue belongs to the section "Gastroenterology & Hepatopancreatobiliary Medicine".

Deadline for manuscript submissions: 20 December 2025 | Viewed by 3919

Special Issue Editor

Dr. Irina Blumenstein

E-Mail Website
Guest Editor
University Hospital, Goethe University Frankfurt, Medical Clinic 1, 60596 Frankfurt, Germany
Interests: inflammatory bowel disease; short bowel syndrome; colonoscopy; colorectal cancer screening

Special Issue Information

Dear Colleagues,

We are thrilled to announce a call for manuscripts on the compelling topic of “Patient Reported Outcomes (PROs) in Inflammatory Bowel Disease (IBD) Around the World” for publication in our journal. As the field of IBD research continues to evolve, there is a growing recognition of the importance of incorporating patient perspectives and experiences into clinical care and research.

Patient Reported Outcomes (PROs) offer invaluable insights into the real-world impact of IBD on individuals’ lives, encompassing aspects such as symptom burden, quality of life, treatment satisfaction, and functional status. Understanding PROs is crucial for optimizing patient-centered care, enhancing treatment decision-making, and evaluating the effectiveness of interventions across diverse populations and healthcare settings.

We invite submissions that explore various dimensions of PROs in IBD, including, but not limited to, the following:

  1. Which PROs are routinely used in IBD?
  2. How is PRO reporting implemented in daily clinical routine?
  3. Best practice solutions for PRO reporting in different regions/countries.
  4. What are the strategies to implement patients’ views on therapeutic approaches?
  5. Which PROs reflect the psychosocial impact that IBD is having on QOL?
  6. Which diversity aspects are recognized in PRO reporting?

Dr. Irina Blumenstein
Guest Editor

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. Journal of Clinical Medicine is an international peer-reviewed open access semimonthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2600 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

  • inflammatory bowel disease
  • patient reported outcomes
  • symptom burden
  • quality of life
  • treatment satisfaction

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Published Papers (5 papers)

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Research

14 pages, 1849 KiB  
Article
Objective Treatment Targets and Their Correlation with Patient-Reported Outcomes in Inflammatory Bowel Disease: A Real-World Study
by Panu Wetwittayakhlang, Siripoom Ngampech, Saichol Pattarakulniyom and Peter L. Lakatos
J. Clin. Med. 2025, 14(13), 4733; https://doi.org/10.3390/jcm14134733 - 4 Jul 2025
Viewed by 280
Abstract
Background & Aims: treat-to-target approach is essential for improving outcomes in inflammatory bowel disease (IBD). This study aimed to assess real-world achievement in objective monitoring (clinical, biomarker, and endoscopic assessments) and the correlation between patient-reported outcomes (PROs) and treatment targets. Methods: [...] Read more.
Background & Aims: treat-to-target approach is essential for improving outcomes in inflammatory bowel disease (IBD). This study aimed to assess real-world achievement in objective monitoring (clinical, biomarker, and endoscopic assessments) and the correlation between patient-reported outcomes (PROs) and treatment targets. Methods: This retrospective study included consecutive IBD patients from January 2020 to December 2024. Disease activity was assessed using the Harvey-Bradshaw Index (HBI), partial Mayo score, PRO2, and PRO3, along with C-reactive protein (CRP) levels and endoscopic scores (SES-CD, MES). Clinical outcomes were evaluated at baseline, 1 year, and 2 years. Results: Among 112 IBD patients (55% with CD, median age at diagnosis: 45.2 years), clinical remission rates at baseline, 1 year, and 2 years were; CD: 75.8%, 70.0%, and 55.8%; UC: 84.0%, 79.5%, and 81.4%. CRP normalization rates at the same time points were; CD: 54.8%, 41.7%, and 63.8% UC: 78.0%, 70.5%, and 81.8%. Endoscopic remission rates were; CD: 58.1%, 50.0%, and 50.0%, UC: 71.4%, 64.5%, and 51.7% Flare-ups were more frequent in CD than in UC (32% vs. 20%), with an 8.1% rate of IBD-related surgery. In CD, PRO2 and PRO3 strongly correlated with clinical remission (AUC = 0.885 and 0.881), moderately with biomarkers (AUC = 0.737 and 0.755), and modestly with endoscopic remission (AUC = 0.695 and 0.685). In UC, PRO2 showed a strong correlation with clinical remission (AUC = 0.972) and moderate correlations with biomarkers (AUC = 0.653) and endoscopy (AUC = 0.783). Conclusions: Clinical remission was more frequent in UC than in CD. PROs showed a strong correlation with clinical remission but only moderate associations with biomarkers and endoscopic remission in both CD and UC. Full article
(This article belongs to the Special Issue Patient Reported Outcomes (PROs) in Inflammatory Bowel Disease (IBD) Around the World)
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16 pages, 1543 KiB  
Article
Work Absenteeism in Inflammatory Bowel Disease Patients Related to Patient-Reported Anxiety Levels and Disease Activity: The IBD-GO-WORK Study
by Raffaele Pellegrino, Ilaria De Costanzo, Giuseppe Imperio, Michele Izzo, Fabio Landa, Andrea Durante, Alessandro Federico and Antonietta Gerarda Gravina
J. Clin. Med. 2025, 14(13), 4410; https://doi.org/10.3390/jcm14134410 - 20 Jun 2025
Viewed by 371
Abstract
Background/Objectives: Patients with inflammatory bowel disease (IBD), whether affected by Crohn’s disease (CD) or ulcerative colitis (UC), are burdened by disability and a reduced quality of life. The individual’s regular participation in daily working life is a key factor among its determinants. [...] Read more.
Background/Objectives: Patients with inflammatory bowel disease (IBD), whether affected by Crohn’s disease (CD) or ulcerative colitis (UC), are burdened by disability and a reduced quality of life. The individual’s regular participation in daily working life is a key factor among its determinants. This work aims to quantify work absenteeism in patients with IBD, profiling it concerning specific demographic variables, the degree of disease activity, and the level of self-reported anxious symptoms. Methods: A cross-sectional observational study targeted patients with a known diagnosis of IBD with disease activity no greater than moderate who were either employed or engaged in regular student activities. Participants were administered the Beck Anxiety Inventory (BAI) for the assessment of anxious symptoms, the Patient-Reported Outcome 2 (PRO-2) for evaluating IBD disease activity, and the Health and Work Performance Questionnaire (HPQ) short form for the analysis of work absenteeism, measured both as absolute and relative over two time frames (the last 7 days and the last 4 weeks). Within the HPQ, Likert scale (0–10) questions were administered to assess self-perceived work productivity. Results: A total of 300 patients were included [median age 43.5 years, IBD (UC 55.7%, CD 44.3%, sex (males 54%, females 46%)], recording absolute absenteeism of 56 (36–76) and 2 (−8–20) hours lost over 4 weeks and 7 days, respectively. The factors associated with worse absolute and relative absenteeism (both at 7-days and 4-weeks) were having CD (p < 0.001), having previous surgery (p < 0.05), and, exclusively in the 4-week assessment, being female (p < 0.05) and a smoker (p < 0.05). The BAI demonstrated a moderate correlation with 4-week absolute absenteeism (ρ = 0.374, p < 0.001), progressively increasing with anxiety severity. Additionally, the BAI was an independent predictor of a 25% work productivity loss over 4 weeks (aOR: 1.1, 95% CI 1.06–1.142, β = 0.096, p < 0.001). Disease activity measured based on PRO-2 strongly correlated with 4-week (ρ = 0.53, p < 0.001) and 7-day (ρ = 0.47, p < 0.001) absolute absenteeism. Conclusions: In conclusion, work absenteeism in IBD patients may be driven by the IBD phenotype, sex, anxiety, and disease activity. Improving these parameters could enhance productivity. Full article
(This article belongs to the Special Issue Patient Reported Outcomes (PROs) in Inflammatory Bowel Disease (IBD) Around the World)
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15 pages, 1146 KiB  
Article
Assessing Highly Processed Food Consumption in Patients with Inflammatory Bowel Disease: Application of the German Screening Questionnaire (sQ-HPF)
by Lea Pueschel, Sonja Nothacker, Leonie Kuhn, Heiner Wedemeyer, Henrike Lenzen and Miriam Wiestler
J. Clin. Med. 2025, 14(11), 3819; https://doi.org/10.3390/jcm14113819 - 29 May 2025
Viewed by 489
Abstract
Background/Objectives: The consumption of highly processed foods (HPFs) is increasing on a global scale, and these foods have been associated with non-communicable diseases (NCDs). In particular, the consumption of HPFs has been associated with the intensification of inflammatory responses, with these foods being [...] Read more.
Background/Objectives: The consumption of highly processed foods (HPFs) is increasing on a global scale, and these foods have been associated with non-communicable diseases (NCDs). In particular, the consumption of HPFs has been associated with the intensification of inflammatory responses, with these foods being implicated in the exacerbation of chronic inflammatory conditions. Conversely, ultra-processed foods (UPFs) have been indicated as a possible factor in the pathogenesis of inflammatory bowel disease (IBD), particularly Crohn’s disease (CD). Methods: From October 2023 to October 2024, 275 patients with IBD were screened at a tertiary referral center. This study’s control cohort comprises 101 individuals from the local population. All study participants answered a questionnaire asking about the participants’ sex, body type and weight, height, age, marital status, employment, and other sociodemographic information. All subjects had to complete a food frequency questionnaire (FFQ) and the German version of the Screening Questionnaire of Highly Processed Food Consumption (sQ-HPF). IBD patients answered questions about their disease course and history as well as objective parameters of inflammation have been collected. Results: The sQ-HPF (%) showed significant differences (p < 0.001; g = −0.5) between the IBD cohort and the control group, suggesting higher HPF consumption within the IBD cohort. A subsequent analysis of the IBD cohort found no significant difference by disease type (Crohn’s disease: p = 0.441; g = −0.1; ulcerative colitis: p = 0.170; g = −0.3) or sex (women: p = 0.219; g = 0.2; men: p = 0.522; g = 0.1), but men with colitis did show higher HPF% compared to women with the same diagnosis. Spearman’s rho revealed no significant correlation between fecal calprotectin and HPF% in men with CD (p = 0.155, r = 0.191) or women with CD (p = 0.836, r = 0.026), and no correlation in men with UC (p = 0.707, r = 0.057) or women with UC (p = 0.560, r = −0.099). IBD health-related quality of life showed a significant positive correlation with HPF consumption in CD men (p = 0.026, r = 0.278), but not in CD women (p = 0.539, r = 0.075). No significant correlations between HPF consumption and health-related quality of life have been found in UC (men: p = 0.663, r = −0.064; women: p = 0.445, r = 0.121). Conclusions: The German version of the sQ-HPF is a reliable tool for rapid screening of habitual HPF% consumption in IBD patients. The findings of this analysis indicate a clear deviation from the recommended nutritional regimens for IBD, emphasizing the imperative for further investigation and the potential development of interventions to address these dietary discrepancies, with the ultimate goal of optimizing health outcomes for these patients. Full article
(This article belongs to the Special Issue Patient Reported Outcomes (PROs) in Inflammatory Bowel Disease (IBD) Around the World)
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10 pages, 371 KiB  
Article
Women with IBD Show Higher Psychophysiological Burden in Comparison to Men with IBD
by Franziska Schulz, Ann Christina Foldenauer, Lara Weidmann, Anne Kerstin Thomann, Andrea Oliver Tal, Sandra Plachta-Danielzik, Thomas Krause, Bernd Bokemeyer, Stefan Zeuzem, Alica Kubesch and Irina Blumenstein
J. Clin. Med. 2024, 13(24), 7806; https://doi.org/10.3390/jcm13247806 - 20 Dec 2024
Viewed by 964
Abstract
Background: Inflammatory bowel disease (IBD) remains an incurable illness. Patients with IBD show gender-specific differences in various aspects of the disease. There is still uncertainty about the causality of the differences. Methods: The aim of this study was to determine the most relevant [...] Read more.
Background: Inflammatory bowel disease (IBD) remains an incurable illness. Patients with IBD show gender-specific differences in various aspects of the disease. There is still uncertainty about the causality of the differences. Methods: The aim of this study was to determine the most relevant psychophysiological gender-specific differences in IBD. For this purpose, a questionnaire survey was conducted on disease activity and psychological concomitant diseases in patients with IBD (n = 300). Among the 218 patients with IBD who provided gender information, both genders were equally distributed. Results: Females with IBD are significantly more affected by IBD-related symptoms than men. Disease activity Scores Harvey-Bradshaw Index (HBI), Partial Mayo Score (pMAYO) showed no significant differences between the sexes in the subgroups with CD (HBI, m: 3 (IQR 1–6), w: 4 (IQR 2–8), p = 0.0677) and UC (pMAYO, m: 1 (IQR 0–4), w: 3 (IQR 0–5), p = 0.2118). IBD Questionnaire (IBDQ)shows significant differences in the gender-specific analysis. The mean value of the IBDQ total score of the female participants was 4.4 (SD 1.1) and that of men was 5.0 (SD 1.0) (p = 0.0002). Conclusions: There is a great need to investigate the causality of gender-specific differences in greater depth. Full article
(This article belongs to the Special Issue Patient Reported Outcomes (PROs) in Inflammatory Bowel Disease (IBD) Around the World)
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12 pages, 660 KiB  
Article
A Cross-Sectional Evaluation of Disability in Inflammatory Bowel Disease Using IBD Disk in a Tertiary Center from Romania
by Oana-Maria Muru, Corina Silvia Pop, Petruța Violeta Filip, Nicoleta Tiucă and Laura Sorina Diaconu
J. Clin. Med. 2024, 13(23), 7168; https://doi.org/10.3390/jcm13237168 - 26 Nov 2024
Viewed by 1029
Abstract
Background/Objectives: The management of inflammatory bowel disease (IBD) includes, besides the control of symptoms, the prevention of organ damage and the improvement of the overall disability. Methods: A single-centered, cross-sectional, non-interventional and population-based study was conducted between October 2023 and August [...] Read more.
Background/Objectives: The management of inflammatory bowel disease (IBD) includes, besides the control of symptoms, the prevention of organ damage and the improvement of the overall disability. Methods: A single-centered, cross-sectional, non-interventional and population-based study was conducted between October 2023 and August 2024 in the Department of Internal Medicine 2 and Gastroenterology of Bucharest Emergency University Hospital to assess the disease disability and quality of life impact using IBD-disk and correlation with different parameters. Results: We included 112 patients; their mean age was 52.35 ± 16.67 years, with a disease duration of 114.9 ± 97.93 months. The majority of patients were represented by men (51.79%). We observed a strong correlation between the CDAI score and overall disability compared to the Mayo score for UC (p = 0.0068). Also, patients with CD and stenotic patterns, as well as the presence of extraintestinal complications, have associated high disability scores. Low hemoglobin levels are associated with high disability (p = 0.0164), while biological treatment is associated with low disability (p = 0.0481). Conclusions: IBD-disk can be used as a valuable tool to assess disability in patients with IBD, also in terms of the activity of the disease, but mostly in terms of the psychological burden of the disease. Full article
(This article belongs to the Special Issue Patient Reported Outcomes (PROs) in Inflammatory Bowel Disease (IBD) Around the World)
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