PRIOR TO SURGERY

PRIOR TO SURGERY : The Information Needs of Patients of Head and Neck Cancer Patients Prior To Surgery: A Pilot Study

For patients who suffer head and neck cancers the decision about what treatment option to follow is an important one, requiring both information and decision making skills. In head and neck cancer, the patient is often required to make that decision quickly, at or around the time of being told their diagnosis, with little counselling support or information provision. This study, conducted jointly by the University of Bradford, University of Hull and University of York, aimed to investigate patients? perceptions of the consultation process and associated information provision in order to develop a better understanding of how information needs may be met.

Twenty nine patients and 12 relatives or close friends, present at the consultation, agreed to participate in the study, which was conducted in Bradford and Hull. Of the 29 patients, 14 had undergone a laryngectomy, 9 patients had undergone radical neck dissections, 3 patients had undergone surgery to remove tumours from their cheek and jaw area, two were being treated for oral cancers one a tonsillectomy and thyroidectomy.

Focus on the Consultation

They were given semi structured interviews, the focus of which was on patient and relative experiences of how the consultation was conducted, with particular reference to their perception of the amount and relevance of the information they were given, their ability to comprehend this information and its consequences and the amount of choice they believed they had in arriving at a decision to undergo surgery.

Participants in the study reported feeling unprepared for the long-term changes that occurred, in particular lifestyle changes that often included loss of employment and social life. Information, support and advice were reported to be inadequate throughout the three to six months post-operatively where these difficulties commonly occurred.

· Participants reported there were often more than five people in the consultation room in addition to the patient and relative, which most participants reported made it difficult for them to focus on what was being said and inhibited them from asking questions.

· Only three participants reported they participated actively in choices over treatment and decision-making. The majority of participants did not ask any questions at consultation and did not realise there was a choice other than to have the treatment recommended by the surgeon.

· Individuals who did want to take an active role in decision-making reported difficulties accessing information to enable them to do so.

· The use of medical jargon and technical words frequently made comprehending explanations difficult for patients.

· Satisfaction with information provision seemed to be related to the patient?s ability to influence the course of the consultation in a way that would enable their needs to be met.

· The findings suggest that patients? information needs differ enormously and cannot be successfully defined by the type of surgery they are facing.

An information and support strategy to enable clinicians to address patient needs more systematically would be valuable