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

In collaboration with Takeda, EFCCA conducted a survey to assess the impact of complex perianal fistulae on the quality of life of Crohn’s disease patients. Developed with experts and patient representatives, it explored diagnosis, symptoms, and the condition’s effect on personal relationships, work, and social life.

The findings were analysed in 2020, though their release was delayed due to the COVID-19 pandemic. The final results were presented virtually at the 16th ECCO Congress in July 2021, providing valuable insights into patient experiences.

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About the Survey

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 a patient’s life 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. 

Methodology

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.