Crohn’s Anal Fistula Quality of Life Scale

Summary

About a third of all people with Crohn’s disease (CD) develop perianal fistulas. These are often difficult to treat and can have a major impact on quality of life, affecting physical and emotional wellbeing, social and professional life, educational activities and intimate relationships.

The only available tool for assessing the status of perianal fistulas and whether there is response to treatment is the Perianal Disease Activity Index (PDAI). The PDAI focuses on clinical targets and only briefly addresses quality of life; it was developed without input from patients living with the condition, and is completed by the clinician.

We aim to develop a new patient-centred quality of life assessment scale with the help of people living in the community with CD-related perianal fistulas with patients. We will call this the Crohn’s Anal Fistula Quality of Life scale (CAF-QoL). The CAF-QoL has the potential for widespread use in research, in development of new interventions, and in clinical practice where it will enable assessment of the effectiveness of fistula treatments and the impact of these on patients’ quality of life.

This study is a 3-phase study.

1. Phase 1 (complete) - We have interviewed patients to explore the experience of living with Crohn’s anal fistula. We analysed transcripts of these interviews to develop a ‘long list’ of issues of importance / concern to patients.
2. Phase 2 (completed) - we have completed three rounds of interviews with patients to inform us about how appropriate the language, layout or content are.

Phase 3 - we intend to ask about 300 patients or more to complete the CAF-QoL on two separate occasions; to determine whether the CAF-QoL is stable over time (reliable).