Update: 2015 Cancer Challenge of the Year Lynch Syndrome Project

25 February 2016
CCY 2015 Team; Natalie Taylor, Janet Long & Deborah Debono

The 2015 Cancer Challenge of the Year ("CCY") project team of Dr Natalie Taylor, Dr Janet Long and Dr Deborah Debono, are on the home stretch of a project that aims to improve the efficacy of the referral process for suspected Lynch syndrome patients.

Led by TCRN member Dr Natalie Taylor of the Australian Institute of Health Innovation, the CCY team partnered with pathologists, oncologists, radiologists and registrars St George and Prince of Wales hospitals to better understand the Lynch syndrome referral process and the barriers impeding its success.

“Lynch syndrome is a hereditary condition that increases the risk of bowel and other cancers. Patients suspected of carrying the Lynch gene mutation should be referred to genetic counselling services for a definitive diagnosis; however, a range of barriers in both clinical and administrative hospital processes are impacting referral rates,” Dr Taylor said.

The CCY research team collected data from the participating hospitals in order to study current referral rates, finding that only 24 per cent of patients with Lynch syndrome indicators were being referred for genetic counselling across the two participating hospitals.

The next step was to survey and later speak to hospital staff involved in the referral process, giving them the opportunity to report and discuss barriers that impeded their clinical practice. The survey responses enabled Dr Taylor and her team to identify the most significant barriers to referral and to start developing interventions using evidence based behaviour change strategies to overcome them. 

“The most prominent barrier was environmental context and resources. Survey respondents mentioned issues like not being able to find referral forms in clinics, or that multidisciplinary team meetings were sometimes scheduled outside of hours, which meant that meant that staff members playing a crucial role in the referral process couldn’t attend,” Dr Taylor said.

“There were also some challenges associated with correct interpretation of wording in reports showing results from tumour sample analysis – terminology was used differently between different departments, so sometimes people receiving the reports weren’t sure how to interpret them.” 

The second key barrier was social influences – namely, the way that colleagues interacted with one another, and how comfortable staff were at sharing opinions at different stages of the referral process; while the third barrier was skills-based: the survey showed that not everybody understood all aspects of the testing and analysis processes involved with Lynch syndrome referral.

“What we’ve found so far is that the key barriers have some overlap between organisations and also between the different roles of the people who play a part in the referral process,” Dr Taylor said.

“There are differences too, which signify the importance of understanding individual organisations and role-related barriers to referrals so that we can target our intervention more effectively.”

The interim audit and barriers survey results of the CCY project have now been presented to relevant hospital staff at a series of focus groups. Ideas for interventions to address key barriers were generated using evidence based behaviour change techniques. The research team are currently gaining authorisation from senior management at both hospitals for the implementation of the interventions to help mitigate or eliminate these barriers within hospital workflows. 

“Our interventions for environmental and resource barriers could be things like restructuring the referral form, making sure that the forms are available, making sure the telephone numbers are correct on the forms, having prompts and cues about what positive and negative results mean in a particular context, or working with pathology, surgeons, oncologists, and hereditary cancer counsellors to generate standard terminology of pathology reports,” Dr Taylor said.

“Skills wise, it could be training, or providing clinicians with definitions on the pathology report as a reference point to help them decipher what the results mean.”

The researchers will now implement their interventions and will spend the next few months testing their efficacy by measuring the extent to which they improve the numbers of patients appropriately referred for further testing. The project is due to be completed in June 2016.

CCY 2015 TDFI Diagram

The Theoretical Domains Framework Implementation ("TDFI") approach (Taylor et al., 2014)


Find out more about Cancer Challenge of the Year funding and associated projects.   

CCY 2015: 'Achieving behaviour change for detection and management of Lynch Syndrome'

  • Taylor, N., Long, J.C., Debono, D., Williams, R., Salisbury, E., O’Neill, S., et al. (accepted). Achieving behaviour change for detection and management of Lynch syndrome using the Theoretical Domains Framework Implementation (TDFI) approach: a study protocol. BMC Health Services Research.
  • Dr Natalie Taylor, Centre for Healthcare Resilience and Implementation Science ("CHRIS"), Australian Institute of Health Innovation, Macquarie University.