Pre-operative expectations in patients with endometriosis - a qualitative interview study

Expectations determine treatment outcomes in several medical conditions. The significance of expectations for treatment outcomes in patients with endometriosis remains unknown. Endometriosis is a painful and debilitating disease that negatively affects quality of life. Up to 30% of surgically treated patients report persistent post-operative complaints and pain disability without sufficient medical explanation, indicating the impact of non-medical factors on treatment outcomes.

The present qualitative study aimed to describe and understand pre-operative patient expectations, facilitators of and barriers to positive treatment outcomes.

As part of a large mixed-method cohort study, a subsample of N = 33 patients with endometriosis were interviewed before laparoscopy. Structured content analysis was performed.

Positive expectations included significant improvement or absence of complaints, receiving a diagnosis, and subsequently improved health-related quality of life. However, patients also reported negative expectations such as invalidation of their experience, persistence of complaints, or post-operative side effects. Patients perceived positive expectations as facilitators for positive treatment outcomes. Further facilitators included enhanced patient and treatment information, gynaecologists specialized in endometriosis, and greater awareness of endometriosis. Perceived barriers to good post-operative quality of life included post-operative pain and scarring, insufficient rest, avoidance behaviour, and stress.

Positive and negative expectations coexisted. Positive expectations suggest that participants place much hope in laparoscopy. However, these positive expectations may exceed probable treatment outcomes for some patients. Negative expectations were also expressed and constituted a risk for nocebo effects. Further identified facilitators and barriers show that patients are very clear about what is helpful or not for their health-related quality of life after laparoscopy. Patient and treatment information may be enhanced to prevent unrealistic treatment expectations and nocebo effects.