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

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. Cancer registries collect information about all new cancer diagnoses. This information could help identify people who might benefit from genetic testing, especially for rare cancers. However, not many people are currently referred for this testing. We wanted to know if people would be comfortable with cancer registries contacting them about genetic testing and how best to do this. We interviewed 19 people to get their thoughts. Most people were comfortable with the registry reaching out because they liked the idea of using health information to improve patient care. They had some important considerations including: making the contact easy to understand; taking care when and how to contact people after their diagnosis; including key information and helpful links; keeping it simple and not too much work for the patient; ensuring data is kept safe; and the registry is trustworthy. People thought this approach could help more patients and their families get genetic testing when needed. However, they felt it was important to do it in a way that respects patients’ feelings and privacy. We need to do more research with patients and clinicians to identify the best way for cancer registries to contact people about genetic testing. This could help improve care for people with rare cancers and their families.