Consumer acceptability of a cancer registry-driven familial cancer testing pathway: a qualitative study using the...

Familial cancer test referral rates for rare tumors are suboptimal and follow a social gradient; while cancer registries are legally mandated to collect comprehensive clinical pathological data which could be used to inform clinical practice. We aimed to investigate consumer acceptability of and preferred approach for a cancer registry-driven familial cancer testing notification pathway.

A qualitative study using semi-structured interviews informed by the Theoretical Framework of Acceptability was conducted.

Nineteen individuals recently disclosed to the Victorian Cancer Registry diagnosed with a cancer meeting local familial cancer testing criteria were interviewed. Participants supported being notified directly by the cancer registry to inform them about familial cancer testing, as they welcomed using existing health data in new ways to optimize health care. Key considerations included the timing, tone, language, information provided in the registry communication, and minimizing the onus on the patient. Assuring data security and verifying the legitimacy of the registry were raised.

Individuals diagnosed with cancer found the service model acceptable. Participants preferred either to action the findings independently, with supporting resources, or permit the cancer registry to directly inform treating clinicians. Ongoing and consumer-informed work is required to develop processes and resources including digital options.