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Background <p>In Brazil, the epidemiology and care pathways of patients with inflammatory bowel disease (IBD) are poorly documented. Mapping the patient journey is key to identifying gaps and informing health policies. This study explores the Second Journey of IBD patients in Brazil and compares the findings with those from the First Journey.</p> Methods <p>Two cross-sectional online surveys were conducted in 2017 and 2023 with adults diagnosed with IBD. The questionnaire addressed challenges in diagnosis, treatment, and disease impacts. Comparisons between survey waves were performed using logistic regression models adjusted for sex, age, and region, with results presented as adjusted absolute differences in prevalence and 95% confidence intervals.</p> Results <p>In the Second Journey (<i>n</i> = 2634), most participants were women (72.9%), aged 35–54 years (50.8%), and Crohn’s disease was the most common diagnosis (58.7%). Compared to the First Journey (<i>n</i> = 3549), a lower proportion of patients were diagnosed within one year of symptom onset (58.8% vs. 53.8%), corresponding to an adjusted difference of -3.5% percentage points (p.p.) (95% CI -6.1; -1.0). The proportion of patients using biological therapies was higher (40.6% vs. 60.9%), as was attendance at multidisciplinary clinics (8.0% vs. 10.0%). A higher proportion of patients reported being satisfied with treatment (30.2% vs. 41.6%; +10.4 p.p., 95% CI 8.0; 12.9). Fatigue was the most frequent symptom, even during remission.</p> Conclusions <p>The Second Journey highlights the persistent impact of IBD on daily life. Gaps in multidisciplinary care and patient experience remain, emphasizing the need for more comprehensive care strategies.</p>

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Mapping the evolution of inflammatory bowel disease care in Brazil: a comparison of cross-sectional surveys from 2017 and 2023

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年5月12日

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  • Marta Brenner Machado,
  • Andreia Vieira,
  • Silvana Paiva Orlandi,
  • Mariana Otero Xavier,
  • Letícia Becari Cal de Souza,
  • Maria Izabel Lamounier de Vasconcelos,
  • Luciana Schuck Guedes

摘要

Background

In Brazil, the epidemiology and care pathways of patients with inflammatory bowel disease (IBD) are poorly documented. Mapping the patient journey is key to identifying gaps and informing health policies. This study explores the Second Journey of IBD patients in Brazil and compares the findings with those from the First Journey.

Methods

Two cross-sectional online surveys were conducted in 2017 and 2023 with adults diagnosed with IBD. The questionnaire addressed challenges in diagnosis, treatment, and disease impacts. Comparisons between survey waves were performed using logistic regression models adjusted for sex, age, and region, with results presented as adjusted absolute differences in prevalence and 95% confidence intervals.

Results

In the Second Journey (n = 2634), most participants were women (72.9%), aged 35–54 years (50.8%), and Crohn’s disease was the most common diagnosis (58.7%). Compared to the First Journey (n = 3549), a lower proportion of patients were diagnosed within one year of symptom onset (58.8% vs. 53.8%), corresponding to an adjusted difference of -3.5% percentage points (p.p.) (95% CI -6.1; -1.0). The proportion of patients using biological therapies was higher (40.6% vs. 60.9%), as was attendance at multidisciplinary clinics (8.0% vs. 10.0%). A higher proportion of patients reported being satisfied with treatment (30.2% vs. 41.6%; +10.4 p.p., 95% CI 8.0; 12.9). Fatigue was the most frequent symptom, even during remission.

Conclusions

The Second Journey highlights the persistent impact of IBD on daily life. Gaps in multidisciplinary care and patient experience remain, emphasizing the need for more comprehensive care strategies.