Survey to define informational needs of patients undergoing surgery for Crohn’s anal fistula

Abstract

Aim There are many surgical treatments used in Crohn's anal fistula, although none is perfect. Decisions about surgery in this condition may be preference sensitive. The aim of this study was to identify what information patients would like in order to make treatment decisions and to explore experiences of making decisions in this setting. Method A survey was designed based upon qualitative interviews and input from patients and clinicians. It included a long list of informational items to be ranked on a scale of importance, a control preference scale, the decision regret scale, and items exploring preferred information formats. This was distributed through 10 English hospitals to patients with recent surgical treatment for Crohn's anal fistula. Results were analysed using principal component analysis, to identify key informational needs, and other appropriate descriptive statistics. Results In total 92 questionnaires were returned (response rate 41.8%); 48 (52.5%) respondents were women and 54 (58.7%) had undergone seton insertion. Principal component analysis identified three information needs: wound and aftercare, effect on perianal symptoms, severity of surgery. Decision‐making preferences showed a desire to participate in decision‐making. Median decision regret score was 25/100 (i.e., low). The preferred format for sharing information to support decision‐making was from the surgeon, 80/92 (87.0%), and from a booklet, 58/92 (63.0%). Conclusion Key informational needs in this condition are wound and after care, effect on perianal symptoms, and severity of surgery. Patients would like this information to help engage in shared decision‐making.

A survey of patient informational preferences when choosing between medical and surgical therapy for ulcerative colitis: a sub‐study from the DISCUSS project

“…Decision regret was low but comparable to other areas of IBD [29], surgery [30] and the wider literature [31]. There was no difference in regret between the medicine and surgery group.…”

Patient and Caregiver Perspectives on Their Experiences With Crohn’s Perianal Fistulas

“… 21 Another survey-based study identified wound and aftercare, effect on perianal symptoms, and severity of surgery (risks of procedure, procedure-related pain, and invasiveness) as information needs of patients undergoing surgery for CPF. 22 Participants in a qualitative exploration of patient CPF experiences reported that physicians often did not explain goals and methods of treatment coherently or provide realistic expectations about setons and pain following surgery. 17 …”

‘Optimum’ strategy and outcome in Crohn's anal fistula

“…In discrete choice studies, designed to understand factors influencing decisions, patients frequently weight avoidance of severe complications as the first or second most important factor in treatment decisions, rather than achieving cure or remission [10,11]. Survey work has shown that patients are keen to improve perianal symptoms, have limited need for wound care and hospital reattendance, and minimal surgery [12].…”