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The Angelina Effect: the Personal Risk Assessment Clinic

Illawarra Shoalhaven Local Health District
Project Added:
21 November 2014
Last updated:
15 December 2014

The Angelina Effect: the Personal Risk Assessment (PRA) Clinic

Summary

The project required facilitation of system improvements that resulted in efficiencies that directly supported better outcomes for women at risk of breast cancer.

The development of a Personal Risk Assessment (PRA) Clinic was established to offer women accurate and personalised breast cancer risk advice and assessment, after a rapid increase in referrals from General Practitioners (GPs). 

This project was a finalist in the Local Solutions category of the 2014 NSW Health Awards. Download a poster from the 2014 NSW Health Awards

Aim

To offer eligible women accurate and personalised breast cancer risk advice and a PRA.

Benefits

  • Improved outcomes for women seeking breast cancer risk advice
  • Increased training for counsellors and staff
  • Reallocate resources to improve access to services

Project status

Sustained: The project has been implemented, is sustained in standard business. 

Background

Media interest in the ‘breast cancer genes’ led to increased anxiety about inherited breast cancer among the community and an increase in calls for advice were received from consumers, general practitioners and blood collection centres.

Clinicians identified the health needs of this group of women who self-identified as being at high personal risk of breast cancer, and who were referred by GPs for genetic testing of the BRCA1/2 genes.

The rapid and unanticipated increase in referrals from GPs for women requesting genetic testing for breast cancer resulted in the resources of the ISLHD Hereditary Cancer Clinic (HCC) to be under severe strain.

Implementation

The first step involved developing a plain English guide to genetic testing and trialing this with consumers and referred patients. The guide was then published on the ISLHD Patient Information Portal - a unique and innovative program designed to assist staff develop patient information using evidence based Plain English Guides and test these resources with consumers.

The second step was to balance the needs of women who still requested appointments for genetic counselling, against the limited resources of the Clinic. An innovative model of care was developed which offered safe triaging and management (with a de-emphasis of genetic testing) using collection of family history, a PRA using the validated IBIS risk predictor, and the provision of screening guidelines as per the National Institute for Health and Care Excellence International Guidelines. This is followed by a personalised standard letter sent to both the patient and the referring GP. Patient satisfaction and outcome data was also collected to use in evaluating the effectiveness of the strategies.

A training package for genetic counsellors is now being developed for use in other sites in NSW and Australia.

Results 

  • Nearly all women (99%) who attended the clinic rated their experiences positively. 
  • Of 118 women referred, 90% were offered a PRA clinic appointment and 74% accepted the appointment. 
  • A key feature was that this advice actually changed the management for 35% of women - preventing the costs of over screening and the risks of under screening.

The results from this initiative have led to requests for development of a training and resource package for use by other genetic counsellors (particularly those in rural areas, where there are severe limitations on the availability of appropriately trained doctors). 

A number of sites in NSW have expressed interest in the PRA clinic. This model can also be easily replicated and is highly transferrable to any other Cancer Service who has a dedicated Genetic Counsellor.

Following the successful evaluation of the project, the PRA clinic has been established as a permanent service of the ISLHD Hereditary Cancer Clinic.

Partnerships

  • Prince of Wales  Hospital, Genetic Counselling Department, Hereditary Cancer Clinic (HCC)
  • Medicare  Locals
  • St  George  Hospital
  • Canberra Hospital Genetics Service
  • Illawarra Shoalhaven Cancer Services

Lessons learnt

A key feature of this service requires clinicians to provide honest information and communication to all women at risk and at each stage of their journey.

The traditional model of genetic counselling is labour intensive and designed for the management of high risk families. Until now, there has been almost no attention to the needs of women without breast cancer who are at low or moderate risk. This project showed the community need for such a service, which is not available across other health districts, and demonstrated how such a service could be delivered effectively and efficiently within the resources of the genetics clinic. It is particularly noteworthy that advice was provided which actually changed screening advice in 35% of cases. 

The establishment of the PRA clinic has opened up communication with local GPs.

References 

Working with the client at the end of life”. National Australian Familial Cancer: Research & Practice 2006 (Gold Coast, QLD)

A family with a BRCA2 mutation; when predictive testing strategy goes awry”. Australian Association of Genetic Counsellors National Conference 2007 (Adelaide, SA).

When, how and why BRCA1 and BRCA2 genetic testing is offered to patients who do not meet standard criteria; a clinical audit. National Australian Familial Cancer: Research & Practice 2011 (Gold Coast, QLD).

Clinical Practice Improvement in the Genetics Clinic” National Australian Familial Cancer 2012 Research & Practice (Kingscliff, NSW).

An update of breast cancer genetics”. Breast Care Nurses Special Interest Group Conference 2012, (Sydney NSW).

“Factitious disorders in genetic counselling settings”. Psychological Impact of Hereditary Cancers International Conference 2013 (Sydney, NSW).

Contact

Sian Greening
Senior Genetic Counsellor
Illawarra Shoalhaven Local Health District
02 4222 5576 / 0434 075 719
Sian.Greening@sesiahs.health.nsw.gov.au

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