The Development and Validation of a Patient Questionnaire Tool for the Assessment of Patient-Reported Experiences With Endometriosis Ultrasound

OBJECTIVES: Endometriosis ultrasound is an accurate, cost-effective, and non-invasive diagnostic tool that can help improve the diagnostic delay that patients with endometriosis experience. As an emerging diagnostic method, the perspectives of patients undergoing endometriosis ultrasound remain unexplored. Therefore, the objective of this study was to develop and validate an assessment tool that evaluates patient-reported experiences with endometriosis ultrasound as a decision-making tool. METHODS: This was a 2-part study with the first phase involving a modified Delphi consensus process including a panel of clinicians, sonologists, researchers, and a patient with lived experience of endometriosis. Pre- and post-ultrasound patient questionnaires were subsequently developed. The second phase included validating the questionnaires via a prospective cross-sectional survey study carried out at the Endometriosis Clinic at McMaster University Medical Centre in Hamilton, Canada. Data were analyzed using measures of central tendency, chi-square test, and Fisher exact test as appropriate. Statistical significance was determined by 2-sided P values less than 0.05. RESULTS: Pre- and post-ultrasound questionnaires were developed comprising 8 and 10 questions, respectively. Of 46 respondents, there was a similar representation of patients with an abnormal endometriosis ultrasound (58.7% of patients, n = 27) and those with a normal endometriosis ultrasound (41.3 %, n = 19). Moreover, endometriosis ultrasound results helped most participants (84.8%, n = 39) with treatment decision-making. CONCLUSIONS: This study validates a survey tool that can be used clinically to assess patient-reported experiences with endometriosis ultrasound. It also demonstrates the highly informative nature of endometriosis ultrasound, with many patients choosing to defer more invasive diagnostic methods (i.e., surgery).