Creation and provision of a question and answer resource for esophageal cancer based on medical professionals’ reports of patients’ and families’ views and preferences

Abstract

Abstract Background In the rapidly-progressing healthcare environment, it is essential to improve treatment quality through continuous clarification of the needs and concerns of esophageal cancer patients and their families. Effective collaboration between information providers and academic associations could help make such clarified information available. Methods We analyzed esophageal cancer patients’ views and preferences (PVPs) using data that were previously obtained from medical staff in Japan. Based on these PVPs, we created a question and answer (Q&A) resource through collaboration with the Cancer Information Service in Japan (CISJ) and the Japan Esophageal Society (JES). Results Regarding esophageal cancer, “diet and eating behavior” was the most frequent PVP mentioned by patients and their families, followed by “treatment-related symptoms and adverse effects” and “daily life, recuperation, and survivorship.” These PVPs were noted by a wide variety of medical specialties. By analyzing the PVPs, the CISJ developed 11 proposed questions and sent them to the JES, which then created answers based on evidence and clinical–practice-associated consensus. The resultant Q&A resource was uploaded to the CISJ website with mutual linkage to the JES website. Conclusions This study showed the usefulness of collecting esophageal–cancer-related PVPs from medical staff and fostering successful collaboration between a cancer-information provider and an academic association. This arrangement may represent a model case for developing a sustainable system that can satisfactorily respond to PVPs regarding other cancers and/or issues.