Developing a patient reported experience measure for gastrointestinal procedures (ENDOPREM)

M.D. ThesisBackground: Gastrointestinal (GI) endoscopy and computed tomography colonoscopy (CTC) are important diagnostic and therapeutic tools in the investigation and management of gastrointestinal diseases. Current measures of patient satisfaction and experience within GI endoscopy are clinician derived and measured. This study aims to develop a patient reported experience measure (PREM) specific to GI procedures, derived from the patient’s perspective. Methods: The study comprised three phases. Phase 1: This qualitative phase involved semi-structured interviews with patients who had recently undergone endoscopy/CTC. Thematic analysis identified important aspects of the patient experience. Phase 2: A questionnaire bank was developed from the thematic analysis. An iterative process of review and revision within the wider study team refined the questions. Rounds of cognitive interviews with patients who had undergone GI procedures were used to further refine the questionnaire. Phase 3: The resultant PREM was prospectively administered, for self-completion, to 1652 patients following a GI procedure. IBM® SPSS® 24 was used to investigate the psychometric properties of the instrument. Results: Phase 1: 35 participants participated in semi-structured interviews. Six over-arching themes were identified: anxiety, expectations, information & communication, embarrassment & dignity, choice &control and comfort. Phase 2: Areas related to these themes were structured by procedural stage. Ten rounds of review and revision within the study team were conducted, followed by five rounds of cognitive interviews (total n=15). Phase 3: 799 participants completed the questionnaire (response rate= 48.4%). Of the 59 questionnaire items, a ‘ceiling’ effect was present in 24. No questions demonstrated ‘floor’ effects. Individual item completion rates were high, with only three items having >5% missing. Exploratory factor analysis identified potential scales within the questionnaire. Conclusion: The ENDOPREM™ is a tool which assesses all aspects of the GI procedure experience. Potential future uses include assessing patient experience in routine care or comparing experience associated with different endoscopic interventions in trials