Corticosteroids Usage Impact on Inflammatory Bowel Disease Patients, in Portugal

OBJECTIVES: This study aimed to characterize the corticosteroids usage in the treatment Inflammatory Bowel Disease (IBD) patients in Portugal, as well as the psychosocial impact of its excessive use in patients’ lives.

METHODS: After a literature review focusing on the long-term effects of corticosteroid usage in IBD patients, a structured questionnaire, previously validated by a gastroenterologist, was implemented. Anonymized and self-reported data was collected through an online survey shared with members of two national IBD patient associations.

RESULTS: In June of 2023, a total of 437 IBD patients (249 Crohn’s disease, 181 Ulcerative Colitis), who had previously used corticosteroids for IBD and/ or other associated complications, answered the questionnaire. Mean age was 41 years and 78% were female. 79% with moderate to severe disease. 64% of patients indicated started using corticosteroids more than 4 years ago, mainly prescribed by a gastroenterologist (95%). 27% of the patients reported long-term uninterrupted corticosteroids use. Additionally, 70% indicated using them during disease flares, of which 14% indicated an average use superior to 3 consecutive months, 2 or more times per year. Patients reported that corticosteroid usage impacted their quality of life, stressing high levels of personal, social, and professional limitations (e.g., 35% had to miss work), as well as feelings of anxiety (63%) and sadness (54%). More patients who used corticosteroids for longer periods of time reported loss of self-esteem compared to those who used them in acute situations (65% versus 57%). After starting corticosteroids treatment, 87% of patients developed other complications, namely Cushing’s syndrome or skin problems. Furthermore, 19% indicated to have no information regarding potential long-term effects of such corticosteroid’s usage.

CONCLUSIONS: Prolonged corticosteroid usage in the treatment of IBD patients seems to have a considerable psychosocial impact in patients’ lives, affecting quality of life and causing limitations in several dimensions.