Introduction

The Calman-Hine report recommended that planning in cancer services should take account of the “views and preferences of patients.”1 This requires research to ascertain what patients want and development of measures to ensure that these views are then reflected in practice. Initial national guidelines for care of patients with head and neck cancer did not take account of views of patients or carers.2 We carried out a study of focus groups with patients with head and neck cancer and carers to consider specific standards for their care. We subsequently incorporated their views into new national guidelines.3

Methods

The study took place across the South and West region. We obtained ethics approval from all appropriate local committees as well as the multicentre committee. We obtained patients' names from the ten consultants who formed part of the regional tumour panel (see acknowledgments), all of whom gave at least some information on relevant patients (n=290). We contacted general practitioners as needed to check that the patients were still alive. We did not select participants by stage of disease or prognosis, nor did we ask for detailed clinical information, but in all cases it was at least a year since the patients had received treatment. For carers we considered only spouses (or partners living at the same address) and obtained their names from general practitioners. Bereaved carers were limited to those who had been bereaved for one to three years, so the experience would be fresh but not too raw to discuss.

We arranged nine focus groups that comprised discussions with patients and some carers on standards of care from the initial consultation through to terminal care. Meetings took place in mutually convenient, private, and comfortable locations, such as the postgraduate centre of a local hospital. The meetings usually lasted two hours. The sole exclusion criterion was distance from the venue of the meeting (on grounds of travel costs, which were paid from the study budget), although we also had to exclude one person who was in prison. Because each group was set up locally, there were effectively nine different samples, with initial list size varying from eight to 50 names. We wrote to eight to 29 people for each group (selected in an unstructured, arbitrary manner by the social researcher when the list was too long) to asked them to take part. We included an information sheet, a letter from the consultant, a reply slip, a consent form, and a prepaid envelope. We telephoned those who expressed an interest to answer questions and set a meeting date. The proportion taking part varied across groups because of attrition at different stages—for example, of 11 carers approached in one area from an initial list of 14, seven agreed to attend but only six actually attended because one was unwell.

We have previously shown in a pilot study that such groups could discuss standards effectively when participants had initially recounted what had happened to them.4 We therefore divided discussions into two parts, in some cases by reconvening the group, so that participants initially described their experiences and subsequently discussed the standards. Before the meetings we sent all participants a short, edited version of the relevant standards, differing slightly depending on the type of treatment they had experienced (for example, surgery, radiotherapy). An experienced group moderator used a topic guide to facilitate all meetings. After initial discussion about their personal histories of cancer, participants discussed the standards. Many common issues were covered, such as “reasonable” waits at various stages, how the diagnosis should be given, and sources of information. All 58 participants were also given an evaluation form so we could obtain views on their experience of focus groups.

Meetings were taped and fully transcribed. We analysed the experiences and views, noting variations across groups when relevant. Because the sample was small we did not attempt analysis by other variables, such as sex or age. There was no requirement that a consensus view be reached, but much agreement was found in practice.

Results

Altogether, 13 meetings were held, of which three were reconvened. One supplementary interview was undertaken with a man who was unwilling to participate in a group discussion. The meetings covered 40 patients and 18 carers. Most patients were men (26/40), and most carers were women (11/18). The participants included some people in whom research is considered difficult, such as people with a laryngectomy or with altered appearance.5 Table 1 shows the composition and location of groups.

Overall, patients and carers thought that some of the original standards should be dropped, others modified, and some new ones created (table 2). Comments on the standards were detailed so we have given just two examples here.

Discussion

This study provided detailed information on the views of patients and carers on head and neck cancer care, with a high level of satisfaction for the participants. The participants had clear and well informed ideas about appropriate standards, and we could include their views in established national standards for the process of care. Introducing such views not only alters the content of standards but also helps them to become more accessible to lay readers. Focus groups were an efficient way of assessing views of patients and carers on professionally derived standards. These views differed substantially from views of professionals. A reconvening technique helped data quality when patients “had a story to tell.”

The use of an experienced social researcher and facilitator reduced training and other costs associated with a junior researcher; lack of knowledge about head and neck cancer was not a problem. Participants responded easily to the standards, and the therapeutic effect of the study is noteworthy. For two patients it was the first time they had discussed their experiences. Even recently bereaved people generally reported a high level of satisfaction.

Waiting times

After the diagnosis and suggested course of treatment waiting times should be as short as possible—certainly not more than 10 working days. Waiting times could probably only be shorter if all tests could be processed more quickly.

Information

Patients are so often left to find their own sources of information on the social, financial, and physical implications of treatment, and whenever possible written information should be available in all outpatient clinics and wards. Specialist nurses do indeed fulfil an important function, but the clarity of verbal information may sometimes be poor. Local support organisations are very helpful as their times of contact are not hospital led.

Many patients who have just been told they have cancer are fearful—frightened of the future, their treatment, and their families' reactions. They may be confused by the treatments being suggested, and many are still not completely prepared for what is happening or what might occur after treatment. There is a gap in communication between medical staff and patients and carers, and it may be helpful for videos to be available for patients to watch at their convenience. Such a video could show a patient going through the major activities that arise from day one—from smiling consultant saying “you have cancer” (which might also help newly qualified medical staff to learn how to communicate bad news) through magnetic resonance imaging (a truly frightening experience for some) to the actual treatments and surgery (not too much detail here), and on to face masks, pipes, tubes, etc, that may be needed. Some people seek additional information from the internet. This may not always be wise as it may raise hopes of a “magic bullet.” Guidance here is imperative.

Radiotherapy should be better explained—all that facial fitting and then having to be still for long periods and the difficulties with eating and swallowing. Sometimes professionals are a little vague, almost deliberately, having a patronising “wait and see” attitude. Part of the training for all medical staff should emphasis the importance of listening. Patients' satisfaction should be sought. They need to have “hard facts” presented so that they are able to accept them.

Carers need to be involved at all stages and should be prepared for what to do in the event of any difficulties. It is essential that carers have a telephone number for a named nurse who they can contact in the event of an emergency.

The future

Standards must be consistent throughout the country. This paper, helpful though it is, does indicate there is room for future development. Clients—the patients—must have a say and, while accepting advice and guidance from the experts, must be allowed to arrive at their own assessment of the implications of their diagnosis of cancer and its treatment.