Monthly Archives: July 2016

Clinical Nurse Specialists counselling cancer patients

Clinical nurse specialists (CNS’s) play a pivotal role in the care of women receiving treatment for ovarian cancer. As doctors in specialist training rotate through services, CNS’s can frequently be the most consistent face of the care team and often have the best opportunity to develop a good understanding of individual patients’ knowledge about their disease, their concerns for their future health and that of their families.   They are therefore ideally placed to discuss BRCA testing with their patients and provide them with the information necessary to make an informed decision about whether to proceed with such testing.

Natalie Percival (and others’) new paper, published in the BJN, “The integration of BRCA testing into oncology clinics” gives the perspective of clinical nurse specialists and their experience of how a new gene testing pathway for ovarian cancer patients was implemented within their cancer service.  (This innovative, streamlined and patient centric pathway is fully described in our paper published in Scientific Reports, and summarised elegantly by Ed Yong in The Atlantic.)

The BJN paper describes the experience of a pilot programme for implementation of the new care pathway, in which 300 women with ovarian cancer were counselled and consented for BRCA testing, 108 of which were counselled by CNS’s.   All clinicians involved in the programme, including the CNS’s, were required to work through online training modules before they attempted to speak to patients and obtain consent for BRCA testing.  They were also all aware that at any time they could refer patients to the genetic team, should they feel that was necessary.

The CNS’s were surveyed about their experience of this addition to their role and responses were universally positive about:

  • the helpfulness and effectiveness of the training modules,
  • consenting for BRCA testing being appropriate for the role of CNS’s working in cancer care team,
  • the value of BRCA testing for their patients
  • feeling well supported by back-up from the genetics team.

One nurse expressed concern about the additional time required to counsel and obtain consent for gene testing, but the others all felt that they were able to incorporate this even within very busy clinics.

Overall the nurses found discussions about BRCA testing with cancer patients a natural extension of their role and found that they were well placed to deliver the service through the continuity of care they provide and their more extensive knowledge of individual’s personal and family circumstances.

First author on the paper, Natalie Percival, also shares her thoughts in this recent video about the testing pathway.

Providing access to BRCA testing through routine oncology appointments is now standard of care at Royal Marsden Hospital.

The MCG programme hugely appreciates the efforts clinical nurse specialists are making towards the goal of making more genetic testing available for more cancer patients.


Simplifying access to BRCA gene testing improves treatment and could save lives

Today, the journal Scientific Reports published our article that describes the results of a pilot study in which 207 ovarian cancer patients at The Royal Marsden NHS Foundation Trust were offered a BRCA gene test as part of their regular cancer clinic appointment.

As well as offering a streamlined patient journey, this testing pathway is less resource intensive and, if it was implemented nation-wide, could save the NHS millions of pounds each year. As the article shows, all 207 women who took part in the pilot study accepted the offer of a genetic test, and provided very positive feedback. Within the test group, 32 patients were found to have a BRCA mutation, and became eligible for new precision medicine treatments that are only available to patients with a BRCA mutation.

To be able to offer the genetic test in the cancer clinic, doctors and nurses completed our 30-minute online training module. If a patient was found to have a BRCA mutation, they received an appointment with the genetics team together with their result, so that they could discuss the implications in more detail. In many cases, family members of these patients also saw a geneticist to discuss and decide whether to have a test to see if they had inherited the BRCA mutation. Relatives that have a BRCA mutation have various options available to them to improve early detection or prevention of cancer. Relatives that do not have a BRCA mutation can be spared these.

This pathway is now the standard at The Royal Marsden, and is being adopted at other hospitals in the UK and internationally. If it were implemented across the NHS, the savings in genetic appointments are estimated to save £2.6M per year compared with the current standard process.

In a companion study we found that the new approach to genetic testing was extremely cost-effective. If all 7,000 women diagnosed with epithelial ovarian cancer in the UK each year were offered genetic testing, just a single year’s testing is likely, over time, to prevent hundreds of breast and ovarian cancers and dozens of deaths in their relatives. National implementation for all ovarian cancer patients would cost £4,339 per quality-adjusted life year – far below the £20,000 threshold that is used to decide what tests and treatments the NHS should offer.

Most importantly, patients have been overwhelmingly positive about the new testing pathway, which reduces the number of appointments they need and the time it takes to get the test result.

The Mainstreaming Cancer Genetics programme is very pleased that this work has been so successful and has already helped so many people. We are now working hard to make the new pathway available to all ovarian cancer patients across the country and piloting the model for other cancers.


Find out more:

BRCA testing for cancer patients – a new streamlined pathway in practice

Mutations in the cancer predisposition genes, BRCA1 and BRCA2, cause about 15% of ovarian cancer and 4% of breast cancer. Together this is about 2,500 cancers in the UK each year.

Knowing if a cancer is due to a cancer predisposition gene mutation can provide vital information about the cause of the cancer and can aid decisions about the best treatments and drugs to use. It can also help relatives, by identifying those relatives that are at increased risk of cancer and giving a window of opportunity to prevent cancer from occurring in them.

Unfortunately, cancer predisposition gene testing has historically been very restricted due to two types of barriers, testing barriers and access barriers.

The MCG programme is undertaking the multidisciplinary research and implementation required to remove these barriers.

Removing testing barriers

We are now delivering cancer predisposition gene testing faster, cheaper and better than before by harnessing new DNA sequencing technology. To do this, we designed and developed the TruSight Cancer Panel (TSCP) in collaboration with Illumina. TSCP is now in use by many labs and is bringing affordable, accurate cancer predisposition gene testing to cancer patients and their relatives throughout the world.

Removing access barriers

We have developed a streamlined, patient-centred ‘mainstream’ genetic testing pathway for cancer patients that brings testing to the patient, in their routine cancer clinic, but retains the expertise of genetics for the patients that require it. The pathway is 5x faster and requires 13x fewer resources than the traditional pathway. Many units around the world are now adopting the mainstream pathway.

We have implemented TSCP testing and the mainstream pathway at the Royal Marsden hospital to deliver BRCA testing to ovarian cancer and breast cancer patients. The feedback has been very positive.

Watch the video above to hear the experiences of two patients who have gone through the pathway.