The informational and decisional preferences of patients undergoing surgery for Crohn’s anal fistula: a qualitative study

Aim

One in three patients with Crohn’s disease will develop a perianal fistula, but only a few achieve long-term healing. Treatment is both medical and surgical. Since there is no ‘best’ surgical procedure, patient preference is important in selecting the appropriate treatment for this condition. The aim of this study was to investigate the informational and decisional preferences of patients when surgical treatment is being considered.

Method

Patients who had undergone surgery for Crohn's anal fistula underwent face-to-face semi-structured interviews. These explored the experience of treatments for fistula, of receiving information and of participation in decision-making. Transcripts were analysed by two investigators through inductive thematic analysis. Saturation was assessed for at 12 interviews and then after each subsequent interview.

Results

Seventeen patients completed interviews, and saturation was achieved. Five themes were identified, of which two (desired information and decision-making) were relevant to this study. Other themes included experience of Crohn’s disease, experience of receiving information and procedure-specific comments. Participants wanted to have information on any risks, high-level outcomes (e.g. success), impact on day-to-day life and aftercare. Participants felt they did not always receive the information they needed to select the best treatment option. Participants felt uninvolved in treatment decisions and would have liked to trade off operations to reach their treatment goal.

Conclusion

Information provided to patients about surgical treatment of Crohn’s perianal fistula does not meet their needs. Clinicians should address aftercare, impact on quality of life and the risks and benefits of the any proposed procedure.