OBJECTIVES: This study aimed to characterize perianal fistulas (PAF) in patients with Crohn’s Disease (CD) as well as their impact on patients’ life, through the evaluation of the personal, familiar, marital, social, and professional domains.

METHODS: A structured questionnaire was implemented, targeting CD patients with and without PAF, to compare the main differences due to PAF presence. Classification levels scored from 1 (no impact) to 10 (major impact) were used to assess the global domains’ impact on patient’s life. The anonymized data were self-reported, collected through an online platform, and shared by the Portuguese Association of Inflammatory Bowel Disease (APDI).

RESULTS: A total of 193 CD patients answered the questionnaire between May and July of 2022. The mean age was of 47 years, 56% were female, and 27% reported moderate to severe symptoms. 90 CD patients reported a presence of PAF related to CD, of which 41% were diagnosed with complex PAF and 9% reported having rectovaginal fistulas. Over time, the most felt symptoms related to PAF were pain (83%), anal area swelling (62%), and itch (59%). CD patients with PAF revealed higher levels of impact (score 8 to 10) in their life when compared with CD patients without PAF. On a personal level, CD patients with PAF feel more uncomfortable and less understood, despite highlighting a more communicative attitude about the disease with friends and family. Although no significant differences were identified in the marital dimension, 42% of CD patients with PAF evidenced sexual restrictions compared to 32% without PAF. Regarding the professional dimension, higher levels of impact were reported by CD patients with PAF (24% vs 10%).

CONCLUSIONS: This study reveals how the presence of PAF in CD patients can impact their life, from specific symptoms and complications to daily life restrictions, such as the need of changing jobs or personal relationships.