Multi-dimensional patient-reported outcomes and quality of life at diagnosis of IBD: A population-based inception cohort study

Mohamed Attauabi; Gorm Roager Madsen; Flemming Bendtsen; Jakob Benedict Seidelin; Johan Burisch

doi:10.1016/j.cgh.2024.08.047

Multi-dimensional patient-reported outcomes and quality of life at diagnosis of IBD: A population-based inception cohort study

Clin Gastroenterol Hepatol. 2024 Oct 24:S1542-3565(24)00963-7. doi: 10.1016/j.cgh.2024.08.047. Online ahead of print.

Authors

Mohamed Attauabi¹, Gorm Roager Madsen², Flemming Bendtsen³, Jakob Benedict Seidelin⁴, Johan Burisch³

Affiliations

¹ Department of Gastroenterology and Hepatology, Copenhagen University Hospital - Herlev and Gentofte, Herlev, Denmark; Gastrounit, Medical Section, Copenhagen University Hospital - Amager and Hvidovre, Hvidovre, Denmark; Copenhagen Center for Inflammatory Bowel Disease in Children, Adolescents, and Adults, Hvidovre Hospital, Hvidovre, Denmark. Electronic address: Mohamed.Attauabi.01@regionh.dk.
² Gastrounit, Medical Section, Copenhagen University Hospital - Amager and Hvidovre, Hvidovre, Denmark; Copenhagen Center for Inflammatory Bowel Disease in Children, Adolescents, and Adults, Hvidovre Hospital, Hvidovre, Denmark.
³ Gastrounit, Medical Section, Copenhagen University Hospital - Amager and Hvidovre, Hvidovre, Denmark; Copenhagen Center for Inflammatory Bowel Disease in Children, Adolescents, and Adults, Hvidovre Hospital, Hvidovre, Denmark; Department of Clinical Medicine, Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark.
⁴ Department of Gastroenterology and Hepatology, Copenhagen University Hospital - Herlev and Gentofte, Herlev, Denmark; Department of Clinical Medicine, Faculty of Health and Medical Sciences, University of Copenhagen, Copenhagen, Denmark.

PMID: 39461459
DOI: 10.1016/j.cgh.2024.08.047

Abstract

Background and aims: Patient-reported outcomes (PROs) are pivotal in assessing treatment efficacy and estimating the burden of inflammatory bowel diseases (IBD). We investigated PROs at the time of IBD diagnosis.

Methods: The Short Inflammatory Bowel Disease Questionnaire (SIBDQ), IBD-Disability Index (IBD-DI), Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F), and disease activity-related PROs were assessed in the Copenhagen IBD Inception Cohort, a prospective, population-based cohort of patients newly diagnosed with IBD between May 2021 and May 2023.

Results: A total of 203 UC and 116 CD patients were recruited. At diagnosis, 160 (78.8%) and 99 (85.3%) patients with UC and CD, respectively, reported moderate-to-severe impairment in at least one PRO (p=0.18), with 89 (43.8%) and 74 (63.8%), respectively, reporting moderate-to-severe impairment in at least two PROs (p<0.01). Being female, the disease extent of UC, and extraintestinal manifestations were associated with impaired PROs. There were no differences found according to CD phenotype. FACIT-F, IBD-DI, and SIBDQ scores showed weak, but significant, correlations with the Mayo Endoscopic Score in UC, and the FACIT-F score with C-reactive protein (CRP). In CD, SIBDQ, IBD-DI, and FACIT-F correlated moderately with CRP and fecal calprotectin, but not with the endoscopic severity of CD. None of the PROs correlated with iron, ferritin, or vitamin D levels. Among the most prevalent symptoms reported were fatigue, abdominal pain, urgency, and passing of blood in both CD and UC.

Conclusion: We found a substantial patient-reported disease burden in newly diagnosed IBD, underscoring the importance of vigilant PRO monitoring in clinical practice.

Funding: This study was funded by an unrestricted grant from the Novo Nordisk Fonden.

Keywords: Inflammatory bowel disease; disability; disease activity; disease burden; fatigue; patient-reported outcomes; population-based cohort; quality of life.