Information needs following a diagnosis of oesophageal cancer; self-perceived information needs of patients and family members compared with the perceptions of healthcare professionals: a pilot study

This pilot study was undertaken to describe patients’ and family members’ information needs following a diagnosis of oesophageal cancer and healthcare professionals’ (HCP) perceptions concerning patients’ and family members’ information needs. Another aim was to describe patients’ and family members’ satisfaction with information provided. Data were collected by means of a self‐report questionnaire. A total of 15 patients, 16 family members and 34 HCP participated. Patients and family members consider most information to be important. The high rating for information about tests/treatment and self‐care means that both patients and family members consider this to be the most important areas of information. Healthcare professionals tend to underestimate both patients’ and family members’ needs for information. Patients and family members were only partly satisfied with the information received, with patients in general more satisfied with information given compared with family members. Patients’ and family members’ needs for information following a diagnosis of oesophageal cancer are substantial and have not been adequately met by HCP. A qualitative study might be helpful to complete the description of patients’ and family members’ needs. If a questionnaire is employed, it ought to be less extensive.