Jan Everard, Macmillan Consultant Nurse, gestational trophoblastic disease

Summer 2011

In post 10 years, initially as nurse specialist

 

Location Weston Park Hospital, Sheffield

 

Contact Email Jan|.

 

What is gestational trophoblastic disease (GTD)?

GTD is an uncommon complication of pregnancy. It encompasses a group of disorders (masses or growths) which arise from placental trophoblasts (specialised cells of the placenta). These disorders include complete and partial hydatidiform mole, which are benign but may progress to malignancy; and invasive mole, choriocarcinoma and placental site trophoblastic tumour, all of which are malignant.

Who does it affect and how is it diagnosed?

It’s very rare, affecting 1 in 750 pregnancies. It occurs mostly in young women and may be diagnosed at the first dating scan. Young families can be faced with the double trauma of losing their pregnancy and requiring chemotherapy.

 

The much rarer choriocarcinoma affects 1 in 50,000 pregnancies and may present with excessive bleeding after the birth of a healthy baby. It’s possible for babies of mothers with choriocarcinoma to be affected, so the baby also has an hCG check. Hydatidiform mole may be suspected on ultrasound scan but a definite diagnosis is made on histological examination of products of conception.

What protocols should be followed after a diagnosis of GTD?

The Royal College of Obstetrics and Gynaecology| has guidelines for the management of GTD. Patients are registered for follow-up with one of three screening and treatment centres in the UK – Weston Park Hospital in Sheffield, Charing Cross in London and Ninewells in Dundee.

How does Weston Park Hospital help women with these conditions?

The UK centres are unique in offering expert care – in other countries women are treated in their local hospitals. In Sheffield, around 600 women are referred for screening, treatment and support each year. Patients come from a large geographical area, so we provide support by email and phone, but we also run regular drop-in clinics where women have the opportunity to meet others with a similar condition.

What is the prognosis?

This depends on the extent of disease, but the cure rate is very good. The UK is the leader in managing this condition and has the lowest chemotherapy rate at 5–8%, and highest cure rate at more than 98%.

 

How has the service developed since you’ve been in post?

 

We recently secured funding for a nurse counsellor and nurse specialist to support teenagers and young adults referred to the service, and patients whose first language isn’t English.

 

It had been difficult to establish a support network for people with such a rare condition. But a patient in Sheffield, with support from the centres, developed the first molar pregnancy support website|. The website now receives around 4,000–5,000 unique visitors each month, has an online support forum, and has helped women make contact with the centres at an earlier stage in the referral pathway.

 

We’re also working with the many referral units to Sheffield – over 150 – to identify key workers in GTD and establish more efficient referrals to improve the patient experience. This has proven to be very successful.

What else are you working on?

We have quite a few projects on at the moment, some of which we will present at the international GTD meeting in autumn. One is comparing outcomes for Asian women with Caucasian women following chemotherapy for GTD. GTD is up to three times more common in Asian women than in Caucasian women.

 

How does the team keep up-to-date?

As we are such a specialised team we are quite small in number, so we really enjoy the opportunity to meet up with others interested in GTD at the international congress. We meet regularly with the Charing Cross and Dundee teams to develop and improve the service. Our weekly MDT is also vital to the success of the service.

How do you see the service developing in the future?

We have just introduced nurseled chemotherapy prescribing, which we hope will improve the treatment pathway. We would also like to expand to offer a similar specialist service to other rare tumour groups so patients can benefit from expert care.

Who inspires you?

I worked with a superb paediatric nurse director in Nottingham called Elizabeth Fradd during the 80s. She was inspirational; full of new ideas and a real go-getter. She was a great role model in the care that she gave patients and was appointed Dame Commander of the Order of the British Empire in 2009.

Further information

Visit molarpregnancy.co.uk| or the Sheffield Trophoblastic Disease Centre| website.