Patient decision

Aim: Little is known about optimal management strategies for pilonidal sinus disease (PSD). We conducted a mixed-methods study to understand why patients make, and sometimes regret, treatment decisions.

Method: We conducted longitudinal semi-structured interviews at the time of surgery and 6 months later with 20 patients from 13 UK hospitals. Framework analysis was performed, and themes were mapped to (1) the coping in deliberation framework and (2) an acceptability framework. Results were triangulated with those from structured survey instruments evaluating shared decision-making (SDM, best = 9) at baseline and decision regret (DR, most regret = 100) at 6 months.

Results: Nine of 20 patients were not offered a choice of treatment, but this was not necessarily seen as negative (SDM median 4; range 2-4). Factors that influenced decision-making included previous experience and anticipated recovery time. Median (range) DR was 5 (0-50). Those with the highest DR (scores 40-50) were, paradoxically, also amongst the highest scores on SDM (scores 4). Burden of wound care and the disparity between anticipated and actual recovery time were the main reasons for decision regret.

Conclusion: To minimize regret about surgical decisions, people with PSD need better information about the burden of wound care and the risks of recurrence associated with different surgical approaches.