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Inflammatory Bowel Diseases
Quality of life in inflammatory bowel diseases: it is not all about the bowel
Ronald Keller, Nazar Mazurak, Laura Fantasia, Stefano Fusco, Nisar P Malek, Jan Wehkamp, Paul Enck, Thomas Klag
Intest Res 2021;19(1):45-52.   Published online February 27, 2020
DOI: https://doi.org/10.5217/ir.2019.00135
AbstractAbstract PDFSupplementary MaterialPubReaderePub
Background/Aims
The inflammatory bowel diseases (IBD), ulcerative colitis (UC), and Crohn’s disease (CD) are chronic diseases mostly affecting young patients. As they are diseases accompanying patients for their entire life, and the quality of life (QUOL) interacts with disease activity, improving QUOL should be one of the main goals of therapy. This study aims to identify factors contributing to good or impaired QUOL.
Methods
Questionnaires addressing health-related QUOL and other psychological and social features were positioned on our institutions’ webpage and on the webpage of the largest self-help group for IBD in Germany. Patients were subdivided according to their QUOL score with a cutoff of <60. We used the Short Inflammatory Bowel Disease Questionnaire, the Assessment of the Demand for Additional Psychological Treatment, and the Fear of Progression Questionnaire Short Form.
Results
High numbers of patients in both subgroups showed an impaired QUOL (87.34% in UC, 91.08% in CD). Active extraintestinal manifestations, smoking, high fear of progression and high demand for psychotherapy were associated with reduced QUOL. In addition, polypharmacological interventions did not result in a good QUOL, but ostomies are linked to improved QUOL especially in CD patients.
Conclusions
Scores used in clinical day-to-day-practice mainly focusing on somatic factors do not sufficiently address important aspects concerning QUOL. Most importantly, extraintestinal manifestations show a hitherto underestimated impact on QUOL.

Citations

Citations to this article as recorded by  
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    Nathalie Touma, Carolina Baeza-Velasco
    Pratiques Psychologiques.2025; 31(1): 41.     CrossRef
  • Reducing diagnostic delays of extraintestinal manifestations in inflammatory bowel disease: a comparative study of a multidisciplinary outpatient clinic versus conventional referral specialists
    Olga Maria Nardone, Giulio Calabrese, Alessia La Mantia, Guido Daniele Villani, Matteo Megna, Sara Cacciapuoti, Francesca Foglia, Rosario Peluso, Ermelinda D’Alessandro, Mario Ferrante, Anna Testa, Alessia Dalila Guarino, Antonio Rispo, Fabiana Castiglion
    Therapeutic Advances in Gastroenterology.2025;[Epub]     CrossRef
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    Alex Barenboim, Tali Epstein Weiss, Orestis Argyriou, Nathaniel Aviv Cohen, Yehuda Kariv, Meir Zemel, Eran Itzkowitz, Ron Greenberg, Noam Goder, Sara Borok, Kapil Sahnan, Hagit Tulchinsky, Nitsan Maharshak
    Inflammatory Bowel Diseases.2025;[Epub]     CrossRef
  • Beyond the Gut: A Systematic Review and Meta-analysis of Advanced Therapies for Inflammatory Bowel Disease-associated Extraintestinal Manifestations
    Ágnes Eszter Tímár, Andrea Párniczky, Kinga Anna Budai, Márk Viktor Hernádfői, Emese Kasznár, Péter Varga, Péter Hegyi, Szilárd Váncsa, Réka Tóth, Dániel Sándor Veres, Miklós Garami, Katalin Eszter Müller
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    Bing Li, Xiaoli Lin, Suling Chen, Zhe Qian, Houji Wu, Guichan Liao, Hongjie Chen, Zixin Kang, Jie Peng, Guangyu Liang
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    Xin Hu, Liyuan Xu
    Journal of Advanced Nursing.2024; 80(10): 4147.     CrossRef
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    Jiyoung Yoon, Seung Wook Hong, Kyung-Do Han, Seung-Woo Lee, Cheol Min Shin, Young Soo Park, Nayoung Kim, Dong Ho Lee, Joo Sung Kim, Hyuk Yoon
    Gut and Liver.2024; 18(3): 489.     CrossRef
  • Nutritional Profile, Disease Severity, and Quality of Life of Patients with Inflammatory Bowel Disease: A Case–Control Study
    Lea N. Sayegh, Firas Haddad, Layane Bou Jaoude, Nicole Fakhoury-Sayegh, Gessica N. H. A. Heraoui, Zainab Nasrallah, Charbel Chidiac, Rashad Nawfal, Fadi F. Francis, Fadi H. Mourad, Jana G. Hashash
    Nutrients.2024; 16(12): 1826.     CrossRef
  • Development and Assessment of a Novel Ulcerative Colitis–Specific Quality of Life Questionnaire: A Prospective, Multi-Institutional Study
    Jihye Park, Hyun-Soo Zhang, Chung Mo Nam, Joo Sung Kim, Young-Ho Kim, Dong Il Park, Byong Duk Ye, Yoon Tae Jeen, Sehyun Kim, Jae Hee Cheon
    Yonsei Medical Journal.2024; 65(11): 636.     CrossRef
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    Yupei Liu, Jiaming Hu, Shan Tian, Jixiang Zhang, Ping An, Yanrui Wu, Zhongchun Liu, Changqing Jiang, Jie Shi, Kaichun Wu, Weiguo Dong
    BMC Psychiatry.2024;[Epub]     CrossRef
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    Dilek Sivri, Betül Şeref, Melike Şare Bulut, Makbule Gezmen Karadağ
    Nutrition Reviews.2024;[Epub]     CrossRef
  • Potential of Gut Microbe-Derived Extracellular Vesicles to Differentiate Inflammatory Bowel Disease Patients from Healthy Controls
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    World Journal of Gastroenterology.2023; 29(12): 1779.     CrossRef
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    E-Liisa Laakso, Tatjana Ewais
    Biomedicines.2023; 11(5): 1497.     CrossRef
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    Igor G. Bakulin, Venera Sh. Stamboltsyan, Inna A. Oganezova
    Russian Family Doctor.2023; 27(2): 23.     CrossRef
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    Italian Journal of Dermatology and Venereology.2022;[Epub]     CrossRef
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    Ji Eun Ryu, Sung-Goo Kang, Sung Hoon Jung, Shin Hee Lee, Sang-Bum Kang
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    Catherine Rowan, Robert Hirten
    Current Opinion in Gastroenterology.2022; 38(4): 373.     CrossRef
  • Corticosteroid, a double-edged sword in inflammatory bowel disease management: possibility of reducing corticosteroid use through physician education
    Seulji Kim, Seong-Joon Koh
    Intestinal Research.2022; 20(4): 389.     CrossRef
  • The Clinical Features of Inflammatory Bowel Disease in Patients with Obesity
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    Canadian Journal of Gastroenterology and Hepatology.2021; 2021: 1.     CrossRef
  • Lesson from Real-World Experience: Optimal Treatment with Anti-Tumor Necrosis Factor for Ulcerative Colitis
    Jaeyoung Chun
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  • Real-world data on the infliximab biosimilar CT-P13 (Remsima®) in inflammatory bowel disease
    Jose María Huguet, Xavier Cortés, Marta Maia Bosca-Watts, Marian Aguas, Nuria Maroto, Lidia Martí, Cirilo Amorós, Jose María Paredes
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  • The Reality of Patient-Reported Outcomes of Health-Related Quality of Life in an Italian Cohort of Patients with Inflammatory Bowel Disease: Results from a Cross-Sectional Study
    Tiziana Larussa, Danilo Flauti, Ludovico Abenavoli, Luigi Boccuto, Evelina Suraci, Raffaella Marasco, Maria Imeneo, Francesco Luzza
    Journal of Clinical Medicine.2020; 9(8): 2416.     CrossRef
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  • 28 Web of Science
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Inflammatory bowel diseases
Ustekinumab is effective in biological refractory Crohn’s disease patients–regardless of approval study selection criteria
Sadik Saman, Martin Goetz, Judith Wendler, Nisar P. Malek, Jan Wehkamp, Thomas Klag
Intest Res 2019;17(3):340-348.   Published online May 31, 2019
DOI: https://doi.org/10.5217/ir.2019.00012
AbstractAbstract PDFPubReaderePub
Background/Aims
Ustekinumab is effective in active Crohn’s disease. In a retrospective study we assessed the clinical outcome in nonresponders to anti-tumor necrosis factor therapy, and/or conventional therapy and/or the α4β7-integrin inhibitor vedolizumab. As approval study populations do not always reflect the average “real world” patient cohort, we assessed weather patients who would not have qualified for approval studies show similar outcomes.
Methods
Forty-one patients with mild to severe active Crohn’s disease were treated with ustekinumab (intravenous 6 mg per kg/body weight) followed by subcutaneous ustekinumab (90 mg) at week 8. Depending on the clinical response maintenance therapy was chosen every 8 or 12 weeks. Clinical response was defined by Crohn’s Disease Activity Index (CDAI) decline, decline of stool frequency or clinical improvement. Inclusion criteria for approval studies were assessed.
Results
The 58.5% (24/41) showed clinical response to ustekinumab. The 58.3% of this group (14/24) achieved clinical remission. Clinical response correlated significantly with drop of stool frequency and improvement of CDAI score. The 39 out of 41 patients had no side effects and we observed no serious infections. About a third of our patients would not have met ustekinumab approval study criteria. However, patients who did not meet study criteria showed clinical improvement numerically in the same range compared to patients who would have qualified for approval studies.
Conclusions
Ustekinumab is effective, safe and well tolerated in a highly therapy refractory patient cohort. Even though a reasonable number of patients did not meet ustekinumab approval study criteria, approval study results seem to be representative to the overall patient cohort.

Citations

Citations to this article as recorded by  
  • Comparative effectiveness and safety of ustekinumab at different intervals of maintenance phase in inflammatory bowel disease: a systematic review and meta-analysis
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  • 8,330 View
  • 274 Download
  • 15 Web of Science
  • 19 Crossref
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