CCY'15: Achieving behaviour change for detection and management of Lynch Syndrome.

Achieving behaviour change for detection and management of Lynch Syndrome. 

Project Lead: Dr Natalie Taylor, Centre for Healthcare Resilience and Implementation Science ("CHRIS")
Australian Institute of Health Innovation, Macquarie University.


  • Prof Jeffrey Braithwaite, Australian Institute of Health Innovation, Macquarie University
  • Dr Melvin Chin, Medical Oncology, Prince of Wales Hospital & UNSW Australia
  • Rachel Williams, Hereditary Cancer Clinic, Prince of Wales Hospital & UNSW Australia
  • Dr Deborah Debono, Australian Institute of Health Innovation, Macquarie University
  • Mary Potter, TCRN Consumer Adivsory Committee
  • Dr Sharron O'Neill, Faculty of Business and Economics, Macquarie University; Director, Lynch Syndrome Australia
  • Prof Elizabeth Salisbury, South Eastern Area Laboratory Services ("SEALS") Anatomical Pathology, Randwick & UNSW Australia
  • Dr Jordan Butler, SEALS Anatomical Pathology, Randwick

Project Aim:

To support healthcare professionals in developing strategies to improve screening and management of colorectal cancer patients with a high risk for Lynch Syndrome. 


Lynch Syndrome ("LS"), an inherited disorder that increases the risk of many cancers, is found in 2-5% of colorectal cancers. The condition is believed to affect tens of thousands of Australians, but it is extremely underdiagnosed. Despite early diagnosis being critical for managing the condition and reducing mortality, currently less than half of high-likelihood LS risk colorectal cancer ("CRC") patients in NSW are referred for LS gene mutation testing. There is a clear unmet need to develop and implement evidence-based interventions to address the barriers to referring high-likelihood risk CRC patients for screening.

Project Design:

The project uses the six-step, tested, Theoretical Domains Framework Implementation ("TDFI") approach. TDFI uses behaviour change theory and implementation science principles to identify and address barriers to behaviour change. We have successfully used this approach to implement clinical guidelines across UK hospitals, and demonstrated significant, cost-effective outcomes.

In this project we will use the TDFI approach in the Prince of Wales and St George hospitals to:

  • Form health care professional implementation teams and process map LS referrals
  • Conduct baseline audits of CRC surgery patients and LS genetic testing referrals to identify target behaviours for change
  • Undertake TDFI-guided interviews/focus groups with healthcare professionals to identify referral barriers (e.g. knowledge, environment/resources, memory, emotion)
  • Address key barriers by co-designing interventions with healthcare professionals using evidence-based strategies
  • Co-implement interventions
  • Evaluate effectiveness.

This Project will provide:

  • A better understanding of and potential to improve the processes involved in the detection of LS amongst CRC patients
  • A suite of interventions addressing key barriers to referring high-likelihood risk CRC patients for genetic testing for LS
  • Potential to increase the number of CRC high-likelihood LS patient referrals for genetic testing
  • Potential for more accurate identification and faster treatment of LS patients and their relatives, leading to improved patient outcomes within 12-15 months.  

A longer term aim of the project is to share the resulting interventions with hospitals both within and outside NSW to improve referral patterns of CRC patients with high-likelihood risk of LS. We also hope that this project will demonstrate the potential for the TDFI approach to be used to facilitate behaviour change for both healthcare professionals and patients for a range of cancers.

Project Updates:

– February 2016: Update: 2015 Cancer Challenge of the Year Lynch Syndrome Project

- January 2016: Lynch Syndrome Takes Centre Stage at COSA 2015

- March 2015: Announcement of Cancer Challenge of the Year 2015 project

The Cancer Challenge of the Year is an annual TCRN-funded research initiative. It provides up to $100,000 to support up to two translational research projects that seek to meet an unmet need in cancer patient care or treatment.

For further information regarding the CCY15 ‘Behaviour Change’ project, contact the TCRN