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Understanding the patient burden of living with Crohn’s perianal fistulas

June 16, 2022

Having worked in the field of gastrointestinal medicine for over fifteen years Prof. Antonino Spinelli is acutely aware of the negative impact Crohn’s disease (CD) can have on patients’ quality of life (QoL). For Crohn’s patients with additional complications, such as Crohn’s perianal fistula (CPF), the burden can be even more substantial but, until recently, we have lacked the data to fully appreciate and acknowledge its additional potential impact.

Takeda sat down with Prof. Spinelli to discuss the impact of CPF on patients’ quality of life, and his recent work, in partnership with the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) and Takeda, investigating not just the health-related impact, but the overall real-world impact of living with CPF in addition to CD on patient QoL.

What are Crohn’s perianal fistulas (CPF) and how do they develop?

CD is a chronic disease that can cause inflammation anywhere along the gastrointestinal tract, from the mouth to the anus,2 and is associated with a substantial burden on the health-related QoL of patients.3

One of the most debilitating complications of CD are CPF.4 CPF are abnormal ‘tunnels’ between the internal anal canal or rectum and an external opening in the skin near the anus.5,6 They may develop from penetration of fissures or ulcers in the rectum or anal canal. A complex fistula is high (high intersphincteric, high transsphincteric, extrasphincteric or suprasphincteric origin of the fistula tract), may have multiple external openings, and can be associated with the presence of pain or fluctuation to suggest a perianal abscess.5 Complex fistula may also be associated with the presence of a rectovaginal fistula, the presence of an anorectal stricture, or the presence of active rectal disease at endoscopy.5 These are significantly more challenging to treat.7 Between 10 – 20% of people living with CPF have perianal fistulas as their initial manifestation of CD and this can precede the onset of luminal CD by several years.8,9 Despite this the incidence of CPF within patients with CD and the significant impact on quality of life is sometimes not recognized.10 This is something that needs to change.

CPF are commonly associated with anal pain, bleeding, swelling, infection and perianal leaking.4 However, there are significant additional QoL impacts beyond these physical effects, including significant impairment on sexual relationships, social life and work life.1 I collaborated with EFCCA and Takeda to explore some of these additional impacts, through a multi-national patient experience survey.

How was this patient survey carried out?

Having collaborated with EFCCA on another patient perceptions survey,11 I was delighted to work with them once more to gather further valuable insights into the day-to-day life of people living with perianal fistulas and Crohn’s disease. As the lead investigator, I worked closely with EFCCA, Takeda and other medical and patient representatives to develop the questionnaire and analyze the findings.

The coordination efforts by EFCCA were remarkable, enabling us to a collect responses from 820 participants living in more than ten different countries around the world (predominantly European) and covering a total of 11 languages,1 making it one of the largest and most comprehensive patient-reported surveys in CPF to date.1,12,13,14,15 We presented the initial findings at the Congress of the European Crohn’s and Colitis Organisation (ECCO) in July 20211 and the full results will be published soon.

What were the key findings of the survey?

The key outtake from the survey is that people living with CPF report experiencing a more significant negative impact on overall QoL than people living with Crohn’s disease without CPF.1 This is not surprising, especially given the particular physical impact of CPF: our data suggested as people living with CPF may experience significantly more anal pain than people living with CD alone, and more perianal leaking.1

On a psychosocial level, people living with CPF reported feeling more uncomfortable (38.3% vs. 25.3%; P<0.001) and finding it more difficult to talk about their condition with family and close friends (16.4% vs.9.4%; P<0.05).1 Considering a scale of response between 1 (no impact) and 10 (maximum impact), the participants experienced a greater impact on relationships with partners than those with CD alone (5.24 vs. 4.11; P<0.001) that increases avoiding having sex (26.4% vs. 14.8%; P<0.001), ending relationships (6.9% vs. 3.0%; P<0.05), arguing with their partner (22.8% vs. 13.6%; P<0.05), feeling inadequate to their partner (23.5% vs.13.1%; P=0.001), avoiding dating (5.5% vs. 1.7%; P<0.05) and experiencing their partner refusing to have sex with them (4.3% vs. 1.3%; P<0.05).1

Not only do people with CPF report experiencing greater impacts on relationships with family, friends and partners compared to people living with CD alone, but also greater impacts on social life and working life.1 People living with CPF noted changing profession and being unable to play sports because of their condition.1 People with CPF also reported bringing a personal hygiene kit with them more often than those living with CD without CPF.

How can the findings of this survey be used to better support Crohn’s disease patients with perianal fistulas?

Whilst I don’t think anyone will have been surprised by the findings of the survey, documenting them provides us with a much-needed platform from which we can raise awareness and better address the needs of patients living with CPF. The direct involvement of the patients in the definition of the most problematic issues in dealing with CPF gives us a clear message about how to improve the clinical management of these patients in a real-world setting. Crohn’s patients with CPF present with clinical and psychosocial needs that consistently differ from those without CPF and should therefore be managed with a different approach. With this in mind, understanding the patient perspective, including the physical, functional and psychosocial impact of living with CPF is vital for tailoring comprehensive, holistic care strategies to better support CPF patients. The results of this survey not only shed a light on the patients’ critical needs, but further efforts should be made to better understand the patients’ perspectives on the treatment gaps and the actual effectiveness of the current therapeutic strategies.

Prof. Antonino Spinelli is the Director of the Division of Colon and Rectal Surgery and Full Professor of Surgery at the Humanitas University, Milan, Italy. As co-director of the Inflammatory Bowel Disease Center, Prof. Spinelli has contributed to develop, and establish an integrated and multidisciplinary therapeutic pathway for IBD patients. Since 2020, Prof. Spinelli has been the General Secretary Elect of the European Society of Coloproctology.


  1. Spinelli A, Yanai H, Lonnfors S, et al. The impact of perianal fistula in Crohn’s disease on quality of life: results of a patient survey conducted in Europe. Presented virtually at ECCO, July 2021.
  2. Fakhoury M, Negrulj R, Mooranian A, Al-Salami H. Inflammatory bowel disease: clinical aspects and treatments. J Inflamm Res. 2014; 7:113-20.
  3. Floyd, D.N., Langham, S., Séverac, H.C. et al. The Economic and Quality-of-Life Burden of Crohn’s Disease in Europe and the United States, 2000 to 2013: A Systematic Review. Dig Dis Sci. 2015; 60: 299–312. 
  4. Marzo M, Felice C, Pugliese D, et al. Management of perianal fistulas in Crohn’s disease: An up-to-date review. World J Gastroenterol. 2015; 21(5): 1394-1395.
  5. Sandborn W, Fazio V, Feagan B, Hanauer S. AGA Technical review on perianal Crohn’s disease. Gastroenterology. 2003; 125 (5): 1508-1530.
  6. Torkzad MR and Karlbom U. MRI for assessment of anal fistula. Insights Imaging. 2010; 1 (2) :62-71.
  7. Lopez N, Ramamoorthy S, Sandborn W. Recent advances in the management of perianal fistulizing Crohn’s disease: lessons for clinic. Expert Review of Gastroenterology and Hepatology. 2019; 10.1080/17474124.2019.1608818. 1747 – 4124.
  8. Schwartz DA, Loftus EV Jr, Tremaine WJ et al. The natural history of fistulizing Crohn's disease in Olmsted County, Minnesota. Gastroenterology. 2002;122(4):875-80
  9. Gecse K, Sebastian S, de Hertogh G et al. Results of the Fifth Scientific Workshop of the ECCO [II]: Clinical Aspects of Perianal Fistulising Crohn’s Disease—the Unmet Needs. Journal of Crohn's and Colitis. 2016; 10(7): 758–765.
  10. Aguilera-Castro L, Ferre-Aracil C, Garcia-Garcia-de-Paredes A, et al. Management of complex perianal Crohn’s disease. Ann Gastroenterol. 2017; 30:33-44.
  11. Spinelli A, Carvello M, Adamina M et al.  Patients’ perceptions of surgery for inflammatory bowel disease. Colorectal Disease. 2021; 23(10): 2690-2698.
  12. Adegbola S, Dibley L, Sahnan K, et al. Burden of disease and adaptation to life in patients with Crohn’s perianal fistula: a qualitative exploration. Health Qual Life Outcomes. 2020; 18: 370.
  13. Kasparek M, Glatzle J, Temeltcheva T, et al. Long-term quality of life in patients with Crohn’s disease and perianal fistulas: Influencer of Fecal Diversion. Diseases of Colon and Rectum. 2007; 50: 2067 – 2074.
  14. Mahadev S, Young J, Selby W, et al. Quality of Life in Perianal Crohn’s disease: What do patients consider important? Diseases of Colon and Rectum, 2011; 54 (5): 579 – 585.
  15. Panes J, Reinisch W, Rupniewska E, et al. Burden and outcomes for complex perianal fistulas in Crohn’s disease: Systematic review. World J Gastroenterol. 2018; 24 (42): 4821 – 4834.


Date of prep: May 2022