Insights into the information needs of upper gastrointestinal cancer survivors and supporters.

Background:Timely information provision is a key component of quality cancer care, but both information overload and unmet information needs are often reported by cancer survivors and their supporters. In upper gastrointestinal (GI) cancers, physical and psychosocial outcomes remain poor after surgery, and the need for information regarding the health system, tests, disease and physical effects remain high. This study aimed to gain insight into the experiences of upper GI cancer survivors and their supporters around their need for information during the cancer trajectory, and how information provision could be improved. Methods:Participants were survivors who had undergone oesophagectomy or gastrectomy for cancer or pre‐malignant disease (n=17) and theirsupport persons (n=10). Open-ended survey responses were analysed thematically, with an emphasis on the extent and nature of unmet information needs reported retrospectively across six clinically-defined timepoints of care.Results:Participants with unmet information needs reported feeling insufficiently prepared for side effect management after discharge, and experienced greater worry and confusion. A ‘responsibility for knowing’ was perceived during and post-treatment by supporters, who described the broader impact on family. Supporters generally reported higher information needs than survivors but faced a lack of support and often dwindling resources. The need for personalised communication, after-hours follow-up contact and telephone support was frequently endorsed.Conclusions:This analysis highlights the need for models of coordinated care and strong consumer support for a clinical nurse information service system. Timely, appropriately tailored information will further promote effective clinical communication across the cancer survivorship continuum.