IBD: Quality of Life Begins to Decline Early in the Disease
—Patient Reported Outcomes (PROs) at time of diagnosis of IBD are often lacking. This study helps fill the gap by assessing a group of newly diagnosed patients and finding substantial negative PROs, showing the need for patient monitoring at even the early stages of the disease.
Inflammatory Bowel Diseases (IBD) significantly impact patients' health-related quality of life (HRQoL) and impose a considerable economic burden on healthcare systems.1,2 To optimize resource allocation and improve HRQoL in IBD patients, it is essential to understand the personal burden of IBD symptoms at diagnosis. However, most studies focus on selected populations or patients with longstanding disease.3,4 A new study seeks to address this gap by examining patient-reported outcomes (PROs) at diagnosis across various IBD subgroups and exploring their associations with objective inflammatory markers.4
This prospective, population-based study recruited patients from the Copenhagen IBD Inception Cohort, which includes Crohn’s disease (CD) and ulcerative colitis (UC), diagnosed between May 2021 and May 2023. The cohort included 319 adult-onset IBD patients: 203 patients had UC, and 116 had CD. The impact of IBD symptoms was assessed with various PRO instruments, completed a median of 1.2 months after diagnosis. HRQoL was assessed by the EuroQol-5D (EQ-5D-5L) and the Short Inflammatory Bowel Disease Questionnaire (SIBDQ). Fatigue was measured with the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) scale. Disability was evaluated using the IBD-Disability Index (IBD-DI). Disease activity was measured using the Simple Clinical Colitis Activity Index (SCCAI) for UC and the Harvey-Bradshaw Index (HBI) for CD. Symptoms were assessed via the Memorial Symptom Assessment Scale (MSAS), IBD Symptom Inventory, and Mayo Assessment of Functional Gastrointestinal Disease, while disease phenotype was described using the Montreal Classification system. The primary outcome measures in this study were to describe differences in IBD symptoms at diagnosis in IBD subgroups and test whether they were associated with objective inflammatory markers.4
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UC patients were significantly more likely to be female, while CD patients were more likely to have a higher prevalence of perianal fissures (both: P<.01). Overall, CD patients had significantly worse PROs than UC patients, except for in measures of fatigue.4
Most CD (82.8%) and UC patients (69.5%) reported moderate-to-severe impairment in HRQoL, with more than a third of each cohort reporting severe impairment (CD: 43.1%; UC: 29.6%). Both groups reported difficulties performing daily activities (CD: 18.1%; UC: 11.3%). Moderate-to-severe disability was significantly more common in CD (31.9%) than in UC (20.7%), driven by problems with sleep, energy, body image, and interpersonal activities.4
Rates of severe disability were comparable between CD and UC patients. Over a quarter of newly diagnosed patients from both cohorts reported severe fatigue. Female UC patients reported a significantly lower HRQoL (aOR=3.73), more disability (aOR=7.85), and more fatigue (aOR=3.36) than males. Female CD patients also reported more severe disability than males.4
IBD-DI scores were strongly correlated with FACIT-F, EQ-5D-5L, and EQ-VAS scores, and FACIT-F scores were strongly correlated with SIBDQ scores for the entire cohort. All PROs had a significant moderate correlation with C-reactive protein levels (CRP) in both groups. A weaker significant correlation existed between FACIT-F and SIBDQ scores, with the Mayo Endoscopic Score (MES) in the UC group, and MES scores were correlated with IBD-DI scores. In CD patients, fecal calprotectin levels were significantly correlated with all PROs. All analyses were adjusted for time from diagnosis to PRO responses and initiated therapies.4
Pancolitis was associated with worse HRQoL, disability, and fatigue than ulcerative proctitis. PROs for patients with proctitis were comparable to those of patients with left-sided colitis. Patients with mild CD had a significantly worse HRQoL than those with mild UC (P<.01). Worse PROs were also associated with extraintestinal manifestations (EIMs), IBD-related hospitalizations, biologic use, or surgery in both groups and with hospitalizations in CD patients only. The 3 symptoms most frequently observed at diagnosis were lack of energy, abdominal pain, and bloody stool for both groups, with only the frequency of bloody stool significantly differing between UC and CD patients (P<.01). Proctitis was linked to blood and mucus in stools, ileal CD to abdominal pain, nausea and vomiting, and ileocolonic disease to fatigue. In UC, sexual dysfunction worsened PROs, and bowel urgency raised disability risk. Severe abdominal pain increased the risk of moderate-to-severe disability in both UC and CD. CD patients experienced severe fatigue. In CD patients, severe abdominal pain was associated with severe fatigue.4
This study has several limitations, including a small and unrepresentative sample size for patients with penetrating or perianal CD, the potential for interpretation bias in self-reported data, a cohort participation rate of only 60%, and assessing PROs at a single time point.4
This study’s results can improve clinical care for IBS patients; the authors write, “Our prospective, population-based inception cohort study highlights the considerable burden of IBD at the time of diagnosis, where there is moderate-to-severe impairment of at least one PRO in a majority of patients and severe impairment in almost half of patients. Our study emphasizes the importance of a multidisciplinary approach that requires a systematic screening of PROs and symptoms of IBD during the diagnosis to improve the timeliness of interventions and offer critical insights into a patient’s wellbeing that can easily be overlooked during daily care.”4
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