The experience of receiving a letter from a cancer genetics clinic about risk for hereditary cancer

Abstract

Abstract Direct contact may be an option for supporting risk disclosure in families with hereditary cancer. In this qualitative interview studywe explore how healthy at-risk relatives experience receiving a letter with information about hereditary cancer directly from healthcare. The study is part of an ongoing multicentre randomised clinical trial in Sweden that evaluates the effectiveness of direct letters from cancer genetics clinics to at-risk relatives (ClinTrial NTC04197856). We invited 14 relatives who had received a letter and contacted the clinic. We did semi-structed interviews and analysed the data with thematic analysis. The participants had different levels of prior knowledge of the hereditary cancer assessment and many but not all knew that a letter was coming. Overall, these participants believed healthcare-mediated disclosure could complement family-mediated disclosure. They expressed that the letter and the message raised concerns and a need for counselling. they wanted healthcare to be accessible and informed when taking contact. The participants found the message easier to cope with when they had been notified by a family member on forehand, a general attitude was that notifying one’s relatives was a decent thing to do. They thought healthcare should help patients in the disclosing process and also guard the relatives right to be informed. This study supports a direct approach from healthcare as a possible complement to the established model of family-mediated risk disclosure, however further research is needed to develop a good practice.