OBJECTIVES: This study aimed to characterize the Inflammatory Bowel Disease (IBD) patient-journey in Portugal, through the patient-reported experiences and unmet needs, from symptom onset to diagnosis, treatment, and follow-up.

METHODS: An exploratory sequential mixed-methods design was implemented to collect information on IBD patient-journey. The initial phase consisted of qualitative data collection through semi-structured interviews with IBD patients (n=9), followed by an online anonymous quantitative survey, shared with members of two national IBD patient associations. Descriptive data analysis to quantify key aspects in the patient-journey were complemented with qualitative insights.

RESULTS: From February to March 2022, 406 IBD patients (62% Crohn's disease; 38% Ulcerative colitis) answered the survey. Mean age of 37 years, 74% female, mean disease duration of 12 years and 61% with moderate to severe disease. Although symptom onset translated into significant limitations for patients, 28% took more than 6 months to seek healthcare. Time from symptom onset to definitive diagnosis, mainly done by gastroenterology (92%), was superior to 1-year in 38% of cases, with patient delay for first appointment and GP referral to Gastro as the main bottlenecks. Furthermore, 46% of patients reported not receiving all necessary information at the time of diagnosis (ie, disease management, treatment alternatives). Regarding treatment, 15% indicated not being involved in decision-making. 49% were in biologic therapy, mainly for more than a year (66%), of which 18% reported delay in treatment access, particularly due to hospital approval and self-doubts regarding biologic efficacy/safety. Multidisciplinary care follow-up at the main institution was reported by 33% of patients, although with gaps in integrated care between healthcare specialties. 54% resorted on their own to follow-up outside of the main institution, while 13% didn’t due to financial restraints.

CONCLUSIONS: This patient-reported experience study characterized IBD patient-journey challenges in Portugal. These results highlight present unmet needs and can support future patient-centered initiatives.