Maintenance and/or prolonged treatment with oral corticosteroid (OCS) in inflammatory bowel disease (IBD) is not recommended, yet remains common. This study assessed concomitant OCS use and overuse in IBD patients in Germany from 2017 to 2022.

We retrospectively analyzed German claims data (2017-2022). Patients over 18 years of age with continuous insurance and at least s2 quarterly diagnoses of Crohn's disease (CD) or ulcerative colitis (UC) within 2 years were included. To increase the diagnostic certainty and clinical relevance, only patients with IBD who were currently receiving any form of IBD therapy were included in the analysis. OCS overuse was defined as receiving ≥2 OCS prescriptions within 1 year alongside other IBD medications.

The study identified 9407 patients with confirmed CD and 11 772 patients with confirmed UC who were treated with IBD medications excluding OCS monotherapy within the observation period. Among those, 42.8% of CD patients and 39.0% of UC patients were treated with concomitant OCS (CD vs. UC, P < .0001), while 31.3% of CD patients and 29.4% of UC patients exhibited concomitant OCS overuse (CD vs. UC, P < .01). Concomitant OCS use and overuse were more common among younger age groups (P < .01). OCS use and OCS overuse decreased significantly (P < .0001) from 2017 to 2022.

This study provides real-world insights into the patterns of OCS use and overuse in IBD patients. The continued reliance on OCS is highlighted, particularly in CD patients and younger age groups. Notably, steroid overuse has decreased significantly over the last 6 years.

Few studies have examined self-medication with corticosteroids among patients with ulcerative colitis (UC).

To assess the frequency of self-medication with oral corticosteroids in UC patients, and associated factors and reasons.

An anonymous, voluntary, web-based survey was administered to adults with UC recruited via a Spanish patient association (ACCU) and hospital gastroenterology departments. Information was provided by patients; no clinical data were collected. Descriptive statistics and comparisons of frequencies are displayed.

Among 546 respondents (mean age 39.9 years, median duration of UC since diagnosis 7 years,) 36 (6.6%) reported self-medication with oral corticosteroids during the past year (once: 23 patients; 2-3 times: 10 patients; >3 times: 3 patients). Self-medication was more common among patients managed in general gastroenterology vs. inflammatory bowel disease clinics [23 (9.0%) vs. 11 (2.9%), P = 0.019], patients with no regular follow-up [4 (22.2%) vs. 32 (6.1%), P = 0.026] and patients with more flares (P < 0.001). Patients who stored steroids from previous flares (17.9% vs. 6.0%, P < 0.001) or who lived with a partner taking steroids (9.3% vs. 1.1%, P = 0.038) were more likely to self-medicate than other patients. Common reasons for self-medicating included the need for quick symptom relief (55.6%), fear of worsening (47.2%) and difficulty in getting an appointment (25.0%). Only seven patients (19.4%) informed their physician when they started self-medicating and only four (11.1%) declared they would not start corticosteroids again.

Self-medication with oral corticosteroids is not a common practice among patients with UC in Spain, but several areas of improvement exist.

Inflammatory bowel diseases (IBD), including Crohn disease (CD) and ulcerative colitis (UC), are complex disorders with multiple comorbidities. We conducted international patient and physician surveys to evaluate current experiences and perceptions of patients with CD or UC and physicians who treat IBD.

The IBD Global Assessment of Patient and Physician Unmet Need Surveys comprised a patient survey and a physician survey, fielded in North America and Europe between August 16, 2019, and November 10, 2019. Adults with CD or UC (targeted 1:1 ratio) were recruited from physicians, patient advocacy groups, and recruitment panels; physicians were recruited by recruitment agencies and panels.

In total, 2398 patients with IBD (1368 CD, 1030 UC) and 654 physicians completed surveys. Anxiety and depression were the most common comorbidities among patients with IBD. Patients and physicians were generally aligned on treatment goals and patient-physician communication. Patients with IBD reported high quality-of-life impact by rectal urgency and need to use the toilet, which were rated as lower-impact by physicians. Patients defined remission based on symptoms; physicians defined remission based primarily on clinical tests. Patients expected current treatments to control their disease for a longer duration than did physicians. Patients expressed more concern about corticosteroid use compared with physicians; many physicians reported prescribing corticosteroids for more than 4 months per year in some patients.

Patients could benefit from education about disease remission and expectations for current therapies. High corticosteroid use is concerning to patients, and physicians should minimize the use of corticosteroids for extended periods of time.

The use of corticosteroids to treat patients with inflammatory bowel disease [IBD] has been the bedrock of IBD therapeutics since the pioneering work of Truelove and Witts in the UK in the 1950s and subsequent large cohort studies in the USA and Europe. Nevertheless, although effective for induction of remission, these agents do not maintain remission and are associated with a long list of recognised side effects, including a risk of increased mortality. With the arrival of an increasing number of therapies for patients with IBD, the question arises as to whether we are using these agents appropriately in contemporary practice. This review discusses the historical background to steroid usage in IBD, and also provides a brief review of the literature on side effects of corticosteroid treatment as relevant to IBD patients. Data on licensed medications are presented with specific reference to the achievement of corticosteroid-free remission. We review available international data on the incidence of corticosteroid exposure and excess, and discuss some of the observations we and others have made concerning health care and patient-level factors associated with the risk of corticosteroid exposure, including identification of 'at-risk' populations.

Patients with IBD are at risk of excess corticosteroids.

To assess steroid excess in a large IBD cohort and test associations with quality improvement and prescribing.

Steroid exposure was recorded for outpatients attending 19 centres and associated factors analysed. Measures taken to avoid excess were assessed.

Of 2385 patients, 28% received steroids in the preceding 12 months. 14.8% had steroid excess or dependency. Steroid use was significantly lower at 'intervention centres' which participated in a quality improvement programme (exposure: 23.8% vs 31.0%, P < .001; excess 11.5% vs 17.1%, P < .001). At intervention centres, steroid use fell from 2015 to 2017 (steroid exposure 30.0%-23.8%, P = .003; steroid excess 13.8%-11.5%, P = .17). Steroid excess was judged avoidable in 50.7%. Factors independently associated with reduced steroid excess in Crohn's disease included maintenance with anti-TNF agents (OR 0.61 [95% CI 0.24-0.95]), treatment in a centre with a multi-disciplinary team (OR 0.54 [95% CI 0.20-0.86]) and treatment at an intervention centre (OR 0.72 [95% CI 0.46-0.97]). Treatment with 5-ASA in CD was associated with higher rates of steroid excess (OR 1.72 [95% CI 1.24-2.09]). In ulcerative colitis (UC), thiopurine monotherapy was associated with steroid excess (OR 1.97 [95% CI 1.19-3.01]) and treatment at an intervention centre with less steroid excess (OR 0.72 [95% CI 0.45-0.95]).

This study validates steroid assessment as a meaningful quality measure and provides a benchmark for this performance indicator in a large cohort. A programme of quality improvement was associated with lower steroid use.