Patients' perceptions and performance of informing relatives: A qualitative study within a trial on healthcare-assisted risk disclosure (DIRECT)

Abstract

Abstract Current clinical practice encourages patients with hereditary cancer to inform their at-risk relatives (ARR). A Swedish multicentre randomised controlled trial - DIRECT- evaluates whether direct letters from healthcare to ARR (intervention) affects the proportion being reached compared with patient-mediated disclosure only (control). We conducted 17 semi-structured interviews on how DIRECT participants perceived and performed risk communication with ARR. Using reflexive thematic analysis, we found that participation in DIRECT played a minor role in the patients’ experience of genetic counselling and risk disclosure. No integrity-related issues were reported by patients offered disclosure support, and most accepted letters to all ARR. Risk communication was perceived as important and both groups disclosed to all close relatives themselves. However, patients’ views on their duty to inform distant relatives was unpredictable, and a variety of approaches were used, including contacting all ARR, engaging the family, vaguely relying on others to inform, and not disclosing at all. Most patients limited their responsibility to the disclosure, although others wanted relatives to get tested or provided them with continuous information before ending their mission. We also identified some confusion about implication of test results, who needed information, and who was responsible for informing ARR. These misunderstandings possibly affected the risk communication. This study gives insight how direct letters interacts with family-mediated risk disclosure. The healthcare-assisted offer could be an option to convey information to more distant relatives, but the effectiveness of such intervention needs evaluation. Results from DIRECT will be available in 2025.