P042 Patient perspective on the impact of complex perianal fistulas in Crohn’s disease on quality of life: introducing the concept of the patient survey conducted in Europe
A. Spinelli1, S. Lönnfors2, L. Avedano2, D. Bojic3
1Department of Biomedical Sciences, Humanitas University, Rozzano Milano, Italy, 2European Federation of Crohn’s and Ulcerative Colitis Associations, n/a, Brussels, Belgium, 3Takeda Pharmaceuticals International AG, Medical Affairs Europe and Canada, Zurich, Switzerland
Background
Perianal involvement in Crohn’s disease (CD), including fistulas, ulcers, abscesses, strictures and cancer, can lead to a significant, occasionally debilitating impairment in the patients‘ short- and long-term quality of life (QoL). Perianal fistulae can cause symptoms such as leakage, rectal pain, swelling, pain with bowel movements, and fever, which may significantly affect a patient’s social performance, sexual function and normal life activities. Fistulae are a relatively common CD complication: around 35% of CD patients have at least one fistula, while the majority of CD fistulas are complex. Still, few studies have assessed the impact of complex perianal fistulae (CPF) on the QoL of CD patients from the patient perspective.
Methods
A questionnaire assessing the effect of CPF on the QoL of CD patients was developed by patient representatives and medical experts. It consisted of 43 questions about history and activity of CD and CPF, treatment experiences, self-reported level of being informed about the disease, past and current symptoms, self-reported impact on QoL, emotions related to the disease, impact and restrictions on close relationships and social life, sexual activity, professional life and work absence. The survey was launched online on the European Federation of Crohn’s and ulcerative colitis Associations (EFCCA) website on July 15, 2019 (remains open until December 2019) and shared to national patient associations through the EFCCA network. Both CD patients with and without CPF were invited to participate in order to have a control group of patients for data analysis. The self-selective, anonymous survey was offered in English, French, German, Greek, Hebrew, Italian, Polish, Portuguese, Romanian, Spanish and Slovenian.
Results
On November 20, 2019, there were 788 responses from CD patients with and without CPF. There may have been selection bias as the survey is self-selective, only available online and in a limited amount of languages. Considering the retrospective aspect of some questions, recall bias may also have affected some of the responses. Regardless, the data collected will allow a comparison between CD patients with and without CPF, and between patients in different countries, in important, patient-relevant QoL aspects.
Conclusion
The collected data will be analysed in early 2020. The results will provide valuable insights into the often unspoken burden in the life of CD patients with CPF and potentially help in making treatment decisions for CD patients suffering from CPF.