Reducing Barriers, Improving Referrals for Lynch Syndrome Diagnosis

20 March 2019
Natalie Taylor IMG_9934

Imagine being referred for tests that tell you if you’re at risk of familial cancer. Now, imagine not being referred at all. Gaps in hospital referral processes mean that many Australians with Lynch syndrome – a gene mutation that greatly increases their risk of cancer, particularly colorectal cancer – remain undiagnosed.

For many of these patients, TCRN member Dr Natalie Taylor’s passion for implementation science could be the solution to low referral rates for this inherited condition. A senior research fellow at Cancer Council NSW, Dr Taylor is leading a cluster randomised controlled trial (RCT) at eight hospitals across Australia that looks at identifying and overcoming barriers to Lynch syndrome referral.

As part of the research, which is funded by Cancer Australia and Cancer Institute NSW, one health professional from each site will be embedded within the hospital to oversee the project. These practitioners will help the research team compare theory-based to non-theory-based implementation approaches, determining which is most effective in identifying and mitigating gaps in the referral pathway.

“We’ve completed the training with all eight health care professionals now, which consisted of a one-day session, and we’ve now sent them back out into the field,” Taylor says.

“As part of the research project, we received funding to pay them one day a week as part of their current role to run this implementation approach in their own organisation over a two-year period.”

Lynch syndrome is caused by the mutation of one of four mismatch repair genes. In many cases, a cancer diagnosis is the first sign that a person has Lynch syndrome – according to Lynch Syndrome Australia, up to 95 per cent of people with Lynch syndrome are unaware of their status, leaving them at increased risk of a range of cancers at a younger age than the general population.

During the RCT, each hospital representative will work with the research team to complete a seven-stage process at their home site, starting with a baseline audit and an exercise to map existing referral processes within the organisation. The mapping exercise will identify the barriers to referral for patients at risk of Lynch syndrome, enabling Taylor and her team to design a series of intervention strategies that are tailored to each site. 

The strategies are likely to result in refinements to existing health care activities, streamlining processes and systems to better overcome the identified barriers. With endorsement from the hospital’s senior management team, the strategies will be implemented with the help of the trained representative from each site; down the track, the research team will review and assess any resulting changes in practice and the impacts of those changes on patient outcomes.

Alongside the RCT, PhD student April Morrow, who received a TCRN Top-up Scholarship, is running an evaluation project to better understand the complexities of the work.

“She’s looking from the sidelines at how everything’s being applied – how much the trainees are sticking to the prescribed approaches and the impacts of other people, stakeholders and the culture and climate on the work,” Taylor says.

“She’s also looking at collecting time and resource costing information so that we can feed that into an existing model we’ve developed here at the Cancer Council, which looks at the most cost-effective approach for screening colorectal cancer patients with a high-risk of Lynch syndrome.”

The RCT is the latest project in a program of Lynch syndrome research that Taylor has been leading since 2015. In 2016, she and her team received the 2016 NSW Premier’s Award for Excellence in Translational Research for a TCRN-funded project called Achieving behaviour change for detection and management of Lynch Syndrome.

March 22 is International Lynch Syndrome Awareness Day. For more information, please visit Lynch Syndrome Australia.