Patient information needs in upper gastrointestinal cancer: what patients and their families want to know

Abstract

Background: The treatment of upper gastrointestinal cancer (UGIC) patients is complex. Patients are often elderly, comorbid as well as nutritionally depleted and treatment involves multimodality therapy incorporating chemotherapy, radiation therapy and surgery. The pre-treatment information requirements of UGIC patients are not clear but crucially important in ensuring they complete treatment successfully. Methods: A systematic review of the English language literature was performed to determine the specific information needs of patients with UGIC. Results: Following abstract review and comprehensive analysis six articles were included. UGIC patients nominated information regarding post-operative recovery, quality of life, expected survival, management of post-operative symptoms and coping strategies for insurance and financial issues, relationships and family as being most important to them. Patients’ families nominated information on the effects of diagnosis on patient well-being over the ensuing months and detailed information on available support services as being most important. One-on-one consultations with senior medical staff were the preferred method of information transfer followed by web-based information services. Conclusions: For effective treatment of UGIC patients, physicians and surgeons must address issues pertaining to quality of life, finance and relationships and may require specific training, or administrative support, in these areas.