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Better quality of care for UGI cancer patients

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VOL: 97, ISSUE: 12, PAGE NO: 36

Arabella Melville, PhD, is a writer for the National Cancer Guidance Steering Group and was the lead writer of Effective Health Care Management, working with the NHS Centre for Reviews and Dissemination at the University of York

Outcomes for patients with upper gastrointestinal cancers are very poor - both in absolute terms (three-quarters of patients die within a year of diagnosis, see Table 1) and relative to other developed countries. Survival rates in England are below the European average for all three cancers, but the figures for gastric cancer are especially disturbing - 12% of patients in England survive for five years, compared with an average of 21% in Europe as a whole.

Outcomes for patients with upper gastrointestinal cancers are very poor - both in absolute terms (three-quarters of patients die within a year of diagnosis, see Table 1) and relative to other developed countries. Survival rates in England are below the European average for all three cancers, but the figures for gastric cancer are especially disturbing - 12% of patients in England survive for five years, compared with an average of 21% in Europe as a whole.

One probable reason for England's poor outcomes is the lack of specialist management. The bulk of the recommendations in the new NHS guidelines on services for UGI cancers (NHS Executive, 2001) produced by the National Cancer Guidance Steering Group relate to the need for better specialist management. Although UGI cancer causes 13.5% of all cancer deaths in England and Wales, the number of patients with cancer of each site is too small for staff in most hospitals to develop and maintain expertise.

Diagnosis and referral
The gloomy prognosis is also due to the fact that UGI cancer is usually diagnosed when it is too advanced for curative treatment. Earlier diagnosis might improve survival rates (although there is, as yet, no evidence to demonstrate this unequivocally), and better access to appropriate diagnostic facilities could improve outcomes for patients.

As a result of the NCGSG's report, initial diagnosis will be the responsibility of designated teams working in district general hospitals. Each team will include a clinical nurse specialist with knowledge of endoscopy, and one or more of the endoscopists in the team could also be nurses.

Endoscopy, rather than barium swallow, is recommended as the initial diagnostic procedure for symptoms that could be caused by oesophageal and gastric cancer. Endoscopy has the important advantage of allowing suspect tissue to be sampled for pathological examination. This can accurately identify more than 90% of cancer cases.

The steering group calls for open-access endoscopy facilities so patients can be referred directly, thus avoiding unnecessary delay. A substantial growth in the provision of endoscopy is anticipated and funding has been earmarked for this by the Department of Health.

Abdominal ultrasound is recommended as the initial form of investigation for patients with symptoms that could be caused by pancreatic cancer. Biopsy is often not appropriate, particularly if the patient might have to undergo surgery.

After diagnosis, all patients, except those who are very frail, will be referred for specialist assessment and treatment. This concentration of expertise in a relatively small number of hospitals is central to the new strategy for the management of UGI cancer.

Specialist oesophago-gastric cancer teams will be established in hospitals serving populations of one to two million. Specialist pancreatic cancer teams will be based in large cancer centres, drawing patients from catchment populations of two to four million. In addition to doctors, surgeons and pathologists, these teams will include clinical nurse specialists, dietitians and palliative care specialists.

The importance of specialist care
There is evidence that treatment in hospitals which manage larger numbers of patients with UGI cancers - by clinicians who see larger numbers of people - leads to better outcomes. The best results are reported by super-specialist centres in the USA, where perioperative mortality rates for pancreatic and oesophageal cancer surgery are as low as 3%. This is in contrast to reported death-rates in England of 17.7% (Yorkshire) and 11% (south and west of England) for similar operations (see Table 2).

The most detailed study of NHS management of these cancers was carried out in the south and west where 2,294 patients, who were treated in 29 hospitals, were followed for between 16 and 34 months, from the time they first presented in hospital. This study showed a fragmented service in which few patients received specialist care. About a third with each type of cancer were managed by clinicians who treated four or fewer new cases of that cancer each year. These patients survived for significantly shorter periods than those whose doctors treated larger numbers.

The risk of death in patients treated by hospitals which admitted one case per week was significantly lower than the equivalent risk in hospitals which dealt with only one such case per month - 36% lower for pancreatic cancer and 23% lower for gastric cancer, after adjustment for differences in prognostic factors and treatment. The authors suggest that aspects of care that were not measured, such as better nursing and nutrition, may have contributed to better outcomes in specialist units.

The role of clinical nurse specialists
Clinical nurse specialists will be full members of all the teams involved in assessment and treatment of patients with UGI cancer. Such teams will be established in major centres, in local hospitals and at local levels. Their main role will be to provide palliative interventions and care. Nurse specialists will provide information and support for patients and carers, ensure continuity of care, and play a central coordinating role in each team.

The report recommends that each patient should have access to such a nurse from the time of diagnosis. The nurse should know about that patient's cancer and treatment and work closely with those who provide palliative care.

Nurses should give patients as much information as they wish to have. This information should always be realistic - in addition to explaining anticipated benefits of interventions, nurses should acknowledge risks and potential adverse effects, and explain to them, in language the patient understands, so they can, if they wish, contribute to some of the decision-making about their care.

Patients with UGI cancers have problems with eating and many will need nutritional advice and support, as well as palliative interventions, such as stents. Despite the importance of nutrition, there is no research evidence showing how patients with UGI cancers can be most effectively helped. More research needs should certainly be carried out in this area.

Coordination between hospital and home care
Most of the time, the majority of people with cancer live at home. Effective coordination and communication between hospital-based care providers and home-care teams is crucial to patient welfare. It may reduce the need for rehospitalisation after discharge and reduce costs by reducing the duplication of effort. Excellent results have been obtained by combining: a specialist nurse coordinator; a 24-hour telephone service based in the hospital ward where the patient had stayed; a home-care team linked with the hospital; a collaborative case file; and the use of protocols developed by a multidisciplinary team. There are better outcomes when home-care teams make home visits, and when teams hold regular meetings.

Conclusions
Outcomes for most patients in the UK with UGI cancers are poor. While this is largely because of the nature of these tumours, it is also likely to be a result of fragmented services and a lack of specialist management. Specialist nurses could make a contribution to quality of life for patients.

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