Statistics from Altmetric.com
There is scope for improving the services offered to patients with malignant glioma. Clinical audit has highlighted several important issues including some variation in the management of patients aged over 60,1 delays in beginning treatment, and problems with communication between different departments involved in patient care.2 A multidisciplinary Working Group, funded by the NHS Executive, recently developed evidence based guidelines for the management of these patients by surgery, radiotherapy, and chemotherapy. The group also considered the views of patients and their relatives about follow up and psychosocial aspects of care.3
We have derived a package of audit measures from these guidelines that allow treatment centres to assess the care that they provide.4 Proformas within the package cover various topics—for example, technical aspects of treatment, breaking the news of the diagnosis, the support of patients and relatives, and palliative care while in the community. Information is drawn from case records, feedback from patients, relatives and general practitioners, and review of the policy a centre has already developed.
We piloted the proforma by reviewing the case records of 60 patients diagnosed at two treatment centres in London between 1992 and 1994. The table shows some results using one proforma which covers breaking the news of the diagnosis. We found, for example, that overall most case records (67%,40/60) did not record what the patient and their relative had initially been told about the prognosis. However, there did seem to be a difference between centres. At one, clinicians rarely recorded what they had said to patients and relatives whereas at the other this was recorded in just over 50% of cases. Patients at one centre were also more likely to be seen subsequently by counselling or palliative care services. Neither centre had the benefit of a dedicated specialist nurse in neuro-oncology.
The lack of a record does not, of course, mean that the diagnosis and prognosis were not actually discussed in some depth with the patient and relative. However, clearly it is likely to be helpful for others involved in the care of the patient to have sight of such a record. It is also possibly relevant that an earlier study found that only a quarter of a sample of 75 patients drawn from different centres seemed to be fully aware of the likely prognosis for their disease as they began treatment.4
The aim of the guidelines developed by the Working Group has been to suggest methods which will help decision making in general terms rather than provide firm guidance on how particular patients should be treated. For example, an initial assessment of patient disability is recommended. Ten of the 60 case records we audited included some assessment of disability, but none formally recorded the patient’s performance status, an important prognostic factor, using either the WHO clinical performance status or the Karnofsky score.
The current review of cancer services after the Calman-Hine report5 represents an opportunity for the development of neuro-oncology services in Great Britain. A few centres have made progress towards the ideal of neuro-oncology clinics with specialist nurse support and well developed links with rehabilitation and palliative care. The guidelines and audit measures developed by the Working Group will need to be adapted for local circumstances, but treatment centres and purchasers may find them a useful tool in assessing and developing their services.
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.