The information needs of head and neck cancer patients prior to surgery

Objective: To describe the common themes in the experiences and expressed information needs of patients undergoing head and neck surgery. Summary background data: Patients who suffer head and neck cancers and undergo surgery often report considerable psychological distress and impaired social functioning. To optimise survival, the decision about what treatment option to follow is often made quickly, with little support in terms of counselling or the provision of information. There is inadequate previous work exploring the content and delivery of information required by patients at this time. Patients and Methods: Participants included patients who had undergone surgery for head or neck cancer (n = 29) and their immediate relatives who were present at the initial consultation with the surgeon (n = 13). Patients were recruited from out-patient departments in two hospitals in the north of England. All interviews were conducted in participants' homes and were guided by a semi-structured interview schedule devised both from literature and a pilot study. Results: Whilst most participants felt well informed about the surgical procedure they were undergoing, many reported feeling unprepared for the long-term lifestyle changes that occurred. Information, support and advice throughout the 3-6 months postoperative period was reported to be inadequate. The majority of participants did not ask any questions and did not perceive there was a choice regarding treatment. Individuals who wanted to take an active role in decision-making reported difficulties accessing information to enable them to do so. Conclusion: The findings of this study emphasise the need for individualised information provision defined not exclusively by the surgical procedure.