Pituitary News, Issue 10 - Winter 1999.

I am employed part-time as an endocrine research nurse at the Western General Hospital in Edinburgh. I joined a team which includes other endocrine nurses who work in the Metabolic Unit, the Consultants and junior doctors, a dietician, the secretaries, laboratory staff and other hospital personnel.

My name is Maggie Carson and I am employed part-time as a research nurse at the Western General Hospital in Edinburgh. I joined a team which includes other endocrine nurses who work in the Metabolic Unit, the Consultants and junior doctors, a dietician, the secretaries, laboratory staff and other hospital personnel.

I have worked here since October 1996 when I was employed to pilot a computer database of pituitary patients with Acromegaly, who were attending the hospital. During this time I was learning as much as I could about the Pituitary gland and what can happen when things go wrong. I sat in on out- patient clinics and spoke to patients about their symptoms and the different treatments they were receiving. I was lucky in that I was also able to attend the Society for Endocrinology's first Endocrine Nurse training course which was held in Maidstone in 1997. I was also able to attend several endocrine meetings and meet many doctors and learn about new research.

My job can really be divided into three specific areas:

1. Maintaining a computer database

Initially my job primarily involved checking that the list we had of acromegalic patients was correct and up to date, finding patients' hospital records and transferring the clinical information from these notes on to the computer. As I did this, I liaised with endocrine consultants and data programmers to ensure that we were collecting all the clinical information required and changes were made to the database to take account of this and to make it easier to enter the data in a logical manner. This database is accessible from each of our clinic rooms so that when a patient comes to clinic their file can be accessed on computer or a summary sheet giving all the important information can be printed off. The database has the potential to assist in clinical management, to facilitate the recruitment of patients for research studies and to disseminate patient information. This database is now being used by several other centres across the country and you may know some of the research and clinical staff involved in entering data in your centre. It is being expanded to include patients with other pituitary conditions. Although I have now entered every patient with acromegaly onto the database, I am still responsible for the day-to-day upkeep as every time a patient attends for a clinic appointment or visits the Metabolic Unit for tests, the database has to be updated.

2. Acting as an area co-ordinator for The Pituitary Foundation

One day I received a telephone call from The Pituitary Foundation who told me of a patient in Fife who was keen to start a patient support group but who wasn't sure about doing it on his own. I had had similar feelings so it was with great anticipation that I contacted Patrick. After an initial meeting, we decided that between us we could start a local group and so the Edinburgh and S E Scotland group met for the first time in October 1997. The initial list of patients were contacted because I had their details on the database. We had a very successful launch and continue to meet every three months. Numbers have grown and we now have about 200 members, many of whom travel great distances to get to our meetings. We have recently formed a committee.

Whenever a new patient is seen in clinic my Consultant checks if they have heard of The Pituitary Foundation and if they know there is a local support group. If they don't and they would like further information, I send details out to them.

3. Other research studies

Research studies are being performed all over the country in hospitals and university departments. They are funded from many and varied sources such as commercial drug companies, charities and government bodies. Many research nurses around the country have a primary role running research studies.

These are different from normal clinical practice. To give you an example of this I have described my own experiences below:

1. I am involved with patient trials of new forms of therapy. For example, I see patients with acromegaly currently receiving Octreotide who are switching over to the new long acting preparations. This means that instead of injecting themselves three times a day, the patient has an injection once every 28 days. However, because this is a deep intra-muscular injection it needs to be given by a nurse. The first injection is, therefore, given by me and subsequent injections can be given by the patient's practice nurse at their doctor's surgery.
2. At the moment I am setting up a study of Growth hormone replacement in patients with hypopituitarism. This is a rare condition affecting about 250 patients in the south east of Scotland. It is caused most frequently by a tumour of the pituitary gland or by the Radiotherapy used to treat such tumours. Left untreated, patients with hypopituitarism suffer from an inability to respond to stressful illness. However, this risk has been removed during the last 40 years by treatment which replaces their normal hormones such as Hydrocortisone, Thyroxine and the Sex hormones. Despite this replacement therapy, some patients remain lethargic and unwell. The reason for this is not known but it is now thought that there are additional hormones produced by the pituitary gland which need to be replaced before these patients feel better. One of these hormones is growth hormone.

Until quite recently, only children were given growth hormone but it has now become more widely available. It has been licensed for treatment of hypopituitary adults because it reduces their body fat distribution, positively influences their sense of well-being and builds muscle stamina. However, growth hormone is expensive (£3-4,000 per year) and needs to be injected daily by the patient, so it is necessary to conduct patient trials to demonstrate that it is of benefit to patients with hypopituitarism.

For this study I liaise with the patient after the Consultant has referred them to me and arrange a day that would be suitable for them to come into hospital for a morning so that I can perform some tests on them. Routine measurements such as height, weight and blood pressure are also checked. I also ask them to complete a questionnaire which measures how they are feeling about life. On another occasion they spend a day having some tests performed by a doctor. Our study is designed to make different measurements on aspects of physiology from those normally measured in clinical practice. For example, we are measuring Cortisol metabolism and cardiac function.

After these two initial study days have been completed, I make an appointment with the patient to come and visit them at home to teach them how to use their growth hormone pen so they can give themselves their daily injection. After this visit I see them every six weeks to take a small blood test so that we can check they are receiving the correct dose of growth hormone. At the end of three months, I make another appointment with them to return to the hospital so that we can repeat all the tests we performed at the beginning of the study.

No two endocrine nursing jobs are the same. What we do depends very much on where we are working - an endocrine unit, a diabetes/endocrine unit, a university department, a neuro-surgical ward, a programmed investigation unit - and also on whether we are working individually or in a group. Wherever we are based, however, we will all be working as part of a team, a team which includes the patient.