Mapping patient journey in inflammatory bowel disease in Brazil: a cross-sectional descriptive study based on an online survey

Marta Brenner Machado; Flavio Steinwurz; Cyrla Zaltman; Patrícia Mendes Santos Quintiliano; Manuela Mendes Moreira de Andrade Melo; Silvana Paiva Orlandi; Valéria Abrahão Schilling Rosenfeld

doi:10.1590/SciELOPreprints.11878

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Marta Brenner Machado ABCD-Associação Brasileira de Colite Ulcerativa e Doença de Crohn
Flavio Steinwurz Albert Einstein Israelite Hospital
Cyrla Zaltman Hospital Clementino Fraga Filho
Patrícia Mendes Santos Quintiliano DII Brasil - Associação Nacional dos Portadores de Doenças Inflamatórias Intestinais
Manuela Mendes Moreira de Andrade Melo ABCD-Associação Brasileira de Colite Ulcerativa e Doença de Crohn
Silvana Paiva Orlandi Federal University of Pelotas https://orcid.org/0000-0002-7340-743X
Valéria Abrahão Schilling Rosenfeld Nestlé Health Science Brasil

DOI:

https://doi.org/10.1590/SciELOPreprints.11878

Keywords:

patient experience, inflammatory bowel disease, diagnosis, treatment

Abstract

Objective: This study maps the journey of patients with inflammatory bowel disease (IBD) in Brazil, highlighting challenges in diagnosis, treatment, and follow-up. Methods: An online survey was carried out with patients over 18 years old, diagnosed with IBD. A questionnaire was applied, covering aspects of IBD like daily routine, treatments, and its impact on patients' lives. Results: The study included 3,566 patients, mostly women (71.7%) aged 35-54 (39.8%). Crohn's Disease was the most prevalent diagnosis (55.9%). Most patients (58.8%) were diagnosed within a year of symptom onset, while 20.3% faced delays of over three years. Over a third of patients (33.9%) had more than five emergency visits before diagnosis, and 54% were hospitalized due to IBD. After diagnosis, 82.4% changed their diet, though only 31.4% had access to a nutritionist. Aminosalicylates were the most common treatment (45.2%), and 31.6% underwent surgery. Over 70% feared disease flares during remission. Conclusions: The IBD Patient Journey provides a comprehensive view of how IBD profoundly impacts patients' daily lives, even in remission. The study highlights significant challenges, such as delays in diagnosis and limited access to specialists, which negatively affect patients` quality of life.