Learning from patients with cancer and their spouses: a focus group study

Guidelines, standards and protocols are now widespread in clinical oncology. Although based on randomized trial evidence where possible, most are based on professional consensus. However, the goal of incorporating patient and carer views meaningfully in such guidelines has proved elusive. We performed a qualitative, focus group study of patients with head and neck cancer, their carers and bereaved carers in the South and West of England. Patients and carers were asked to discuss their views on a series of professionally-derived standards for care. Pilot work showed that convening patient groups twice was more productive, allowing the first to discuss 'the patient story/journey' and the second to be more directed at specific standards, suitably translated into lay language. The results demonstrated that such methodology was applicable even to groups of patients traditionally viewed as 'difficult', such as laryngectomy patients, facially disfigured persons and bereaved carers. Participants were able to comment meaningfully on the standards and the process of head and neck cancer care as a whole. National (BAO-HNS) standards were modified with the results of the study. Focus groups, especially reconvened groups, are an effective way of gaining patient and carer views of professionally-derived standards in oncology. However, professional qualitative researcher help is required, and it is not necessarily 'easy' or cheap.