Informing esophagogastric cancer patients about treatment outcomes: development of an online tool and training for physicians (Preprint)

BACKGROUND With the increasing use of shared decision making (SDM), esophagogastric cancer patients play a larger and more important role in the decision-making process. To be able to make well-informed decisions, patients need to be adequately informed about treatment options and their outcomes, namely survival, side effects or complications, and health related quality of life (HRQoL). Online tools and training programs can aid physicians in this complex task, however to date none of these are available for use in informing esophagogastric cancer patients about treatment outcomes. OBJECTIVE This study aims to develop and evaluate the feasibility of an online prediction tool and a supporting communication skills training to improve the manner in which physicians inform esophagogastric cancer patients on treatment outcomes. With improving the provision of treatment outcome information, we aim for information that is evidence-based, precise, and personalized to patient and tumor characteristics which is communicated in a way tailored to the individual information needs. METHODS An online prediction tool to be used during the consultation, named the Source tool, was designed using an iterative, user-centered approach. An accompanying communication skills training was developed based on specified learning objectives, literature and expert opinions. The Source tool was tested in several rounds: 1) a focus group (6 patients and survivors), 2) semi-structured patient interviews (5 patients), 3) think-aloud sessions (3 medical oncologists) and 4) expert interviews (6 field experts). In a final pilot study, the Source tool and training were tested as a combined intervention using 5 medical oncology fellows and 3 esophagogastric outpatients. RESULTS The Source tool contained personalized prediction models and data from meta-analyses concerning survival, treatment side effects/complications and quality of life. The treatment outcomes were visualized in a patient-friendly manner using pictographs, and bar and line graphs. The communication skills training consisted of a blended learning for clinicians comprised of an e-learning and two face-to-face sessions. Adjustments to improve both training and tool were made according to feedback from all testing rounds. CONCLUSIONS The Source tool and training could play an important role in informing esophagogastric patients in an evidence-based, precise, personalized and tailored manner about treatment outcomes. Preliminary evaluation results are promising and provide valuable input for further development and testing of both elements. However, patient’s remaining uncertainties and doctors’ old habits and variating trust in the prediction models might influence the effect of the tool and training on daily practice. To investigate the impact of the combined tool and training on information provision in the context of treatment decision-making, we are currently conducting a multicenter clinical trial (SOURCE, NCT04232735).