Pituitary News, Issue 21 - Autumn 2001.

We owe it to our patients to be enlightened and forward-thinking. We should be striving to improve care, audit results and push for better treatment, both for our pituitary patients and for endocrine patients in general. So why is this difficult to achieve?

John Wass
Professor of Endocrinology, University of Oxford & Consultant Endocrinologist, Radcliffe Infirmary

Sue Thorn
Executive Director, Society for Endocrinology

First, the NHS is constantly changing and doctors and nurses are having to cope with different systems. In addition, there are not enough doctors and certainly not enough endocrinologists. The government is trying to do something about this, but it will be 10-12 years before new specialists are trained and numbers can increase substantially. Therefore, at present, and for the foreseeable future, we will all be very busy, both with the medical and the administrative aspects of our roles. Many waiting lists are still getting longer, rather than shorter. On top of this, medical research is, of course, always moving forward and endocrinologists have to keep up to date with changes in best practice.

However, the above must not allow us to become negative for more than a moment. We have to be pragmatic. We should be proud of the NHS. It is typically British to run down institutions. Let's remember that it is true to say that we have some of the best endocrinologists in the world here in the United Kingdom. When we go to meetings in America, it is clear that the standards of clinical care and clinical research rank very highly compared to any other country, including the UK. One way of measuring this is by the proportion of invited lecturers that are from the UK, and the proportion of good UK medical articles published in the top journals. We also know from these journals that our pituitary surgeons' results are as good as those anywhere in the world. UK endocrinologists should be proud of their achievements, but we still need to do more.

What are we actually doing for our patients at the moment?

Growth hormone (GH) deficiency in adults

Many of you will have taken part in the survey that Patsy Perrin carried out of the symptomatic response to GH therapy of patients with adult GH deficiency. This has been carried out for the review of GH therapy by the National Institute of Clinical Excellence (NICE), which is a governmental committee. This group has the difficult task of deciding whether therapies and other medical advances are cost-effective and whether they should be funded by the NHS. Through the Society for Endocrinology and the Royal College of Physicians, endocrinologists have also made a submission to NICE, which is a balanced scientific assessment of the medical literature on growth hormone therapy. Hopefully, between us, we will be able to convince NICE to fund GH therapy throughout the UK and thus remove the current 'postcode prescribing' problem.

Endocrinologists have responsibility to be balanced in their judgement as to whether a patient would benefit from GH therapy. All the other hormones have to be carefully balanced and only if there are then symptoms of lowered quality of life should GH therapy be recommended. This needs to be carefully reassessed at 3 and 6 months after starting treatment, so that the benefits can be carefully measured. Treatment should only be continued if there is clear improvement, as it is an expensive treatment costing a median of around £3500-4000 per patient per year. We also need to make sure that patients who are on treatment are carefully followed up, because only in this way will we eventually get the data which will tell us whether or not growth hormone reverses the increased rate of cardiovascular mortality seen in patients with hypopituitarism and GH deficiency.

Pituitary surgery

UK audits show that, in the treatment of small pituitary tumours causing Acromegaly, the success rate for cure by surgery varies from around 40% to 90%. Endocrinologists carried out these audits and so are very aware of the importance of which surgeon operates. It is essential, therefore, that all centres audit their results so that patients and referring doctors are able to know what sort of results they can expect from a particular surgeon. To this end the Society for Endocrinology is planning to set up clinical management groups involving endocrinologists in District General Hospitals linking in with endocrinologists and neurosurgeons in tertiary referral centres, as is the case with oncologists (cancer specialists) up and down the country. The Society for Endocrinology is also making contact with the Royal College of Surgeons so that we can jointly work to improve standards of pituitary surgery up and down the country and ensure that in every region there are two trained specialist surgeons (usually neurosurgeons) in pituitary surgery. We produced guidelines on how pituitary patients should be managed back in 1997. These were published by the Royal College of Physicians and we will be updating these shortly.

Workload audit

One of the problems that we encounter is the very variable wait that patients have before they are seen by specialists. In some areas, patients deemed moderately urgent can be seen in 4 weeks, but in others they may have to wait up to 6 months. Similarly, MRI scans of the pituitary are much less readily obtainable in some parts of the country than others. We have recently completed an audit of the main teaching centres in the United Kingdom to see what sort of delays are involved and to quantify the variability. We are analysing this now, but it will enable us to put pressure on government and locally where we have shown that delays are considerably longer than the average. This should also improve the quality of patient care.

Country-wide databases of patients with pituitary disease

Many pituitary diseases, such as acromegaly and Cushing's, are really quite rare and it is difficult to get good data from one centre alone, because the numbers are not high enough to be meaningful. For example, we need to know in patients with acromegaly and in Cushing's disease whether successful treatment results in a normal life expectancy or not. We think this is probably the case in acromegaly, but certain knowledge requires a greater number of patients. We are collecting national data anonymously (according to the modern code of practice on confidentiality) from patients with acromegaly in order to assess the outcomes of surgery, drug treatment and Radiotherapy, as well as overall survival. Only in this way will we get meaningful data on the importance of high blood pressure, diabetes and GH levels to survival, as well as on the importance of different treatment methods. We hope to extend this in the near future to patients with Cushing's disease.

Patients empowered by information

Doctors need to know what patients actually want, just as in any other consumer service. British Airways do it and so must we. At my centre, we are currently studying what our patients want by handing them a questionnaire in out-patients. There is also the Pituitary Foundation's patients' charter. We should be clear that patients are entitled at any stage to seek a second opinion if they are not happy or confident about the management of their Pituitary tumour or any other condition.Patients are better informed nowadays. There is a lot of misinformation on the internet as well as good information, and our responsibility is to try and provide sound, balanced information on pituitary conditions through our leaflets and on the internet, so that everybody who wants to can read up about their condition in detail. The Pituitary Foundation leaflets cover most aspects of pituitary disease and the Foundation now has a Medical Sub-committee to ensure they are kept up to date.

Another important aspect of patient/doctor contact is adequate communication. We have talked about communication using the written word, but verbal communication and establishment of trust are both essential requisites for effective management of a condition. Many medical schools now have courses in communication skills and it is important that these are maintained.

In addition, the Society for Endocrinology is working to attract into the speciality good, dynamic, enthusiastic young doctors who have not yet decided which speciality to choose. We need to encourage them to choose endocrinology. The research that is going on in endocrinology and the fact that, more often than not, patients respond very well to treatment, makes it an enormously satisfying speciality to be involved with. We also have to ensure in the future that adequate research continues to be carried out in endocrinology. There are all sorts of pressures on young doctors and the Society for Endocrinology is working on the problem proactively with a view to ensuring both adequate numbers of trainees entering the speciality and their academic progress.

The future

In the future we need to continue to work with patients to achieve better standards of care, better information and improved outcomes for patients with pituitary disease. We need to know the results of different centres so that they are encouraged to improve standards and so that patients know what they can expect. We need to liaise with the Department of Health and with government to ensure these outcomes and also to ensure there are more endocrinologists to look after patients with endocrine and pituitary disease in the future. The government has pledged increasing numbers of specialist to staff hospitals, but as yet numbers have not improved significantly.

There remains an enormous amount to be done in the future for patients with pituitary disease, but I think it is fair to say that a substantial amount has been achieved in the last few years. The feedback we get from our patients is that the Pituitary Foundation's information and support have helped substantially. We endocrinologists need to ensure that all our patients are given the Foundation's details so that they can use its services if they wish. Endocrinologists and the Foundation can also work together to ensure that patients have access to the best endocrinologists and pituitary surgeons in the country.