VOL: 98, ISSUE: 08, PAGE NO: 38
Mark Irving, RGN, DipHE, is oesophagogastric clinical nurse specialist, North Cumbria Acute Hospitals NHS TrustOesophageal cancer is a particularly difficult disease to treat. The chances of surviving this type of cancer are low and have not improved significantly over the past 30 years. Management of the disease is complex, requiring multidisciplinary and often multimodal treatment. Patients require intensive support, and in this context the specialist nurse can offer distinct advantages to both patients and their carers.
Oesophageal cancer is a particularly difficult disease to treat. The chances of surviving this type of cancer are low and have not improved significantly over the past 30 years. Management of the disease is complex, requiring multidisciplinary and often multimodal treatment. Patients require intensive support, and in this context the specialist nurse can offer distinct advantages to both patients and their carers.
Epidemiology and aetiology
Oesophageal cancer is one of the 10 most common cancers in the world (Wobst et al, 1998), and the eighth most common cancer in the UK. It occurs mainly in the seventh and eighth decades of life and affects more men than women. Five-year survival rates are as low as 5% (Clark et al, 1996).
Histologically, oesophageal cancer occurs as squamous carcinoma or adenocarcinoma. The squamous type is associated with cigarette smoking, alcohol intake (particularly spirits) and diets that are low in fruit and vegetables. Squamous carcinoma of the oesophagus is particularly common in the East, with an extremely high incidence in China and Iran, but the incidence has remained fairly static over the past 30 years.
Adenocarcinoma of the oesophagus is more common in the West. Its incidence has increased dramatically in recent years, particularly with tumours at the oesophagogastric junction. Although still relatively rare compared with other types of cancer, adenocarcinoma of the oesophagus is the most rapidly increasing solid cancer in the West.
It is thought to be associated with chronic oesophageal reflux disease which, over a prolonged period, can cause a metaplastic change of the normal squamous epithelium of the oesophagus to a specialised columnar lined epithelium (Barrett's oesophagus). This means that the lining of the oesophagus changes to become similar to the lining of the stomach. Adenocarcinoma develops in this region through stages of increasing dysplasia (Van Sandick et al, 1998).
In many centres patients with Barrett's oesophagus have regular endoscopic surveillance so that any dysplasia or cancer can be caught at an early stage, when a positive outcome is more likely.
Many different treatment options are available. The staging and treatment options at the Cumberland Infirmary are shown in Table 1. Patients may require one or a combination of therapies.
Surgery is considered the best treatment as it offers the greatest chance of long-term survival. However, not everyone is suitable or will want this form of treatment. Only about 30% of patients with oesophageal cancer at the Cumberland Infirmary have surgery (Fig 1), mainly because many are not fit enough or their disease is too advanced. Neoadjuvant therapy, in the form of chemotherapy or chemoradiotherapy, is becoming more widely used. It may enable more patients to have surgery in the future and improve the chances of a successful outcome.
Radiotherapy is used in patients who refuse surgery, or whose age or fitness precludes surgery. However, the results are poor; fewer than 10% of patients with squamous carcinoma of the oesophagus will be alive two years later (Walsh, 1997). Adenocarcinoma of the oesophagus does not appear to respond well to radiotherapy alone.
Patients who are not suitable for radical curative treatment have palliative treatment for their symptoms, the most common of which is dysphagia. Table 2 shows the treatments available. All have a role in managing the disease and patients may require a combination to maintain their swallowing.
Role of the specialist nurse
The management of oesophageal cancer requires a multidisciplinary approach, with each professional playing an important part. The value of skilled nursing cannot be overstated as it can make a dramatic difference to the experience of patients and their relatives. The NHS Executive (2000) acknowledged nurses' contribution to cancer care, while the expert advisory group on cancer recommended that all cancer patients should have access to specialist nursing (Department of Health, 1995).
The role of the specialist nurse can be challenging as many posts are new so the way in which they should function has not been defined. However, one advantage is that this allows nurses to adapt to meet the needs of their particular patient group within the boundaries laid down by the Scope of Professional Practice (UKCC, 1992). Challenging professional boundaries and developing new skills and roles are key features of the nurse's contribution to patient-centred care (Department of Health, 2000a).
The management of oesophageal cancer involves a complex staging process and often a variety of treatments. It can be difficult to keep track of large numbers of patients, particularly if they move between specialties. The specialist nurse can coordinate investigations and admissions, keep patients informed and maintain communication between specialties. This allows patients to move through the system smoothly and efficiently, increasing their confidence in the specialist team.
Having one nurse to coordinate the treatment also means that more investigations and treatments can be performed on an outpatient basis. This allows patients to spend more time at home, reducing the burden on inpatient beds.
The NHS Cancer Plan (Department of Health, 2000b) describes the impact of a cancer diagnosis on the patient and his or her family, and recommends that all patients and families are given access to support. The specialist nurse can provide this from diagnosis through to the post-treatment phase. Most patients are extremely anxious immediately after they have been diagnosed and nurses need to spend time with them to address their fears and relieve some of their uncertainties.
Support is as important for patients undergoing curative therapies as it is for those who are having palliative treatments. The treatments for oesophageal cancer have a number of debilitating side-effects and patients require reassurance and support throughout. Unfortunately these treatments are only the start for many patients as most will develop recurrent disease. This can be an extremely distressing time for the patient and everyone involved in his or her care.
At the Cumberland Infirmary, all patients are given the telephone and pager numbers of the specialist nurse and are encouraged to make contact if they are in doubt about any aspect of their care. Out of hours, they can contact the gastrointestinal ward, where a protocol is in place for providing advice. Fareed (1996) found that simply knowing that support was available gave patients a sense of security.
If necessary, patients can be readmitted to the ward, given an outpatient appointment or given advice over the telephone. This close link between the patient and the specialist nurse provides quick and easy access to advice and support. Deeny and McGuigan (1999) suggest that this may promote the patients' ability to cope with their illness.
Although the patient and his or her family remain at the centre of care, they are provided with a simplified link to all members of the multidisciplinary team (Fig 2). This process allows a special therapeutic relationship to develop between the nurse and patient, which is extremely important in cancer and palliative care.
Recent guidelines (Department of Health, 2001) recommend that patients with upper gastrointestinal cancer should receive as much information as they desire. This should include information on the disease, procedures and treatments, and must be presented in a way that they can understand.
When they are first diagnosed, most patients have little or no knowledge of the disease or its treatment and may have to make difficult choices from the start. It is therefore vital that they have access to specialist knowledge and advice. Biley (1992) describes the importance of encouraging patients and carers to participate in the decision-making process. However, this is only possible by empowering them through the provision of relevant information.
The development of written patient information was one of the main objectives of the nurse specialist post. The wide variation in treatment pathways meant that a single booklet was not appropriate.
Hagopian (1993) found that patients adjust better to their diagnosis and treatment if information is provided in small increments. Leaflets were therefore designed to be given to patients as they move through the stages of diagnosis and treatment (Table 3). The leaflets reinforce the verbal information given by members of the multidisciplinary team and are continually updated in response to patient feedback. This is easy to do as they were designed and printed in the department.
It is also important that all members of the multidisciplinary team are aware of current methods of management. Most GP practices see only one patient with oesophageal cancer a year, which inevitably means that knowledge of the disease and its management is limited. Because patients spend much more time in primary care than in hospital, this had to be addressed to enable continuity of care and adequate symptom control.
A document containing information on the disease, the staging process, the treatments and the management of potential side-effects was distributed to all GP practices in the region. It also contained contact information for all members of the multidisciplinary team in secondary care. The document, which was also posted on the internet and intranet, is available to all those in both primary and secondary care, providing easy access to specialist information and advice.
Most patients with oesophageal cancer eventually die of the disease. While earlier diagnosis, reduced mortality after radical surgery and the use of neoadjuvant therapies are improving survival rates, most patients are too old or their disease is too advanced for them to benefit from curative treatments so they receive only palliative therapy.
The care of all patients can be improved by ensuring a coordinated approach with relevant, patient-specific verbal and written information coupled with ongoing support for the patient and family. The development of the oesophageal nurse specialist's role has shown that this post can achieve these aims.
The nurse's ability to work across the different specialties involved in the treatment of oesophageal cancer and to act as the interface between primary and secondary care improves the coordination of services. The role of the oesophageal nurse specialist is challenging and is constantly developing as it responds to changing patient needs. It must be considered an essential part of any team that is hoping to provide a satisfactory standard of care.
- In the March 7 issue, Mark Irving and Simon Raimes report on an initiative to ensure up-to-date information is passed between secondary and primary care teams