The Impact of Perianal Fistulae on a Crohn’s Disease Patient’s Quality of Life

More information
Start date: 
March, 2020

EFCCA  has embarked on exciting  research with Takeda to find out the impact of complex perianal fistulae on quality of life from Crohn’s disease patients’ perspective. Crohn’s disease patients both with and without perianal fistulae are invited to participate.

The questionnaire has been developed in cooperation with both experts and patient representatives.  It includes questions about diagnosis, symptoms experienced, and the impact of the condition on quality of life in different areas – personal relationships (spouse, family and friends), work, and social life.

Why this survey? 

The aim is to provide valuable insights into the life of a patient with perianal fistulae.  Complex perianal fistulas have a significant impact on the quality of life in Crohn’s disease At the closing of the survey (31 December 2019) over 800 respondents with Crohn’s disease had completed the questionnaire. More than half of the respondents had perianal fistulas. 


A poster introducing the concept of the survey was presented at the ECCO Congress in Vienna on February 14, 2020. During the summer of 2020, the EFCCA team has been working on analyzing the data in preparation for publishing the full results. However, as several medical congresses and meetings have been rescheduled due to the COVID-19 pandemic, the communication plan for the full results of the survey will also need to be rescheduled accordingly.

See Patient_Survey Poster_ECCO2020.pdf

First findings

 The survey revealed, perhaps unsurprisingly, differences in symptoms experienced by those with Crohn’s disease with and without fistulas, but also differences in symptoms experienced by men and women. The significant impact of perianal fistulas on a Crohn’s disease patient’s quality of life was seen clearly on all life areas - social life, working life, relationships with family and friends as well as intimate relationships. EFCCA hopes to be able to publish a more detailed report of the results shortly