Mapping Information Needs over the Diagnosis, Treatment, and Survivorship Trajectory for Esophago-gastric Cancer Patients and Their Main Supporters: a Retrospective Survey.

Abstract

This study reports preliminary data about the information needs of esophago-gastric cancer survivors and their supporters across diagnosis and treatment by identifying time-specific needs and whether the information provided aligned with the needs at each time point. Survivors (n = 26) and supporters (n = 15) were recruited from a public teaching hospital in South Australia. Both groups provided recall data describing personal information domain challenges at 6 clinically significant time points ranging from diagnosis to > 2 years post diagnosis. Responses were analyzed using descriptive statistics for non-normally distributed data. Needs relating to communication, tests, disease, and the physical effects information domains were consistently high across time and in groups. Supporters' overall needs were greater than those of survivors, particularly at times of high need. At times of low need, both groups reported information overload. Our results confirm that survivors and supporters require information throughout the cancer trajectory, up to 2 years after diagnosis, and supporters' needs are likely to be even greater. Results highlight the importance of timely and relevant information provision and provide a basis for the development of resources to empower survivors and supporters to identify and articulate their personal information needs. Patient navigators may provide an avenue to facilitate this approach.