Families with Lynch syndrome (LS) are at heightened risk of multiple cancers and therefore require lifelong surveillance for early detection and treatment. Although an estimated 100,000 Australians carry the LS gene fault, no practitioner is designated to help those patients navigate the health system and coordinate vital yet complex surveillance regimes.
To understand who currently manages the complex LS surveillance regime in Australia; that is, who individuals rely on to coordinate their various routine medical tests and specialist appointments and what implications this has for their surveillance.
An online survey of individuals with Lynch syndrome. 254 completed surveys were received from Australian respondents. Surveys comprised 50 questions and elicited qualitative and quantitative data.
Many (43%) respondents reported coordinating their own surveillance. A further 29% relied on their GP, 15% on their oncologist and 13% on a range of helpers including ‘no–one’, cancer nurses, surgeons, gastroenterologists, gynaecologists, urologists, family members and State cancer registries. Over a quarter of respondents reported having delayed routine surveillance. Reasons included ‘financial reasons’ (17%) and ‘no access to a suitable health professional’ (12%). Respondents who delayed were more likely to coordinate their own surveillance (24.5%) or rely on a GP (22.4%) than have their surveillance coordinated by a cancer nurse or oncologist (11% each). Free text responses indicated many respondents were unsure about the appropriate surveillance requirements, and many were highly critical of a perceived lack of GP / specialist understanding of LS.
There is an urgent need for a more clearly defined model of lifelong care for LS patients. Oncology specialists understand the complexity of LS and are familiar with the multiple LS associated cancers and with the various disciplinary specialists involved in LS surveillance and cancer treatment. They are well-placed to lead the coordination of quality LS surveillance.