Patient Experiences with Surveillance Endoscopy: A Qualitative Study

Prior studies examining patterns of esophagogastroduodenoscopy (EGD) surveillance in patients with Barrett's esophagus (BE) demonstrate variable adherence to practice guidelines. In prior studies, memories of endoscopic experiences shaped overall perceptions and subsequent adherence behaviors, but the specific elements of that experience are unclear. We sought to identify specific elements of the EGD experience that frame overall perceptions of surveillance. We conducted structured in-depth, qualitative interviews with BE patients with a range of severity (non-dysplastic, low-grade and high-grade dysplasia) who recently completed an EGD. Data collection continued until we reached thematic saturation (n = 20). We applied principles of framework analysis to identify emerging themes regarding patients' salient EGD experiences. We validated our coding scheme through multidisciplinary consensus meetings comprised of clinician (gastroenterologist and internist) and non-clinician investigators (sociologist and public health expert). Patient experiences can be conceptualized within a temporal model: prior to, during, and after endoscopy. The most memorable aspects of the EGD experience include physician-patient communication prior to EGD, wait time at the endoscopy center, interpersonal interactions at the time of the EGD, level of pain or discomfort with the procedure, level of trust in the physician following EGD, and gaining a sense of control over BE. We identified six salient memories before, during, and after the procedure that shape patients' perceptions of the EGD experience. We offer recommendations for measuring patient experiences using a composite of validated survey items. Future studies should test the relation of patient experience measures and adherence to surveillance EGD.