Relational Aspects to Screening-Associated Distress Among Individuals With Li-Fraumeni Syndrome: “The All-Clear for Me Is Good. The All-Clear for My Kids Is Great”

Abstract

Screening-associated distress, or “scanxiety,” is a recognized challenge for individuals at risk of cancer diagnosis or recurrence, particularly for those with Li-Fraumeni syndrome (LFS), a cancer predisposition syndrome with high lifetime cancer risks. Despite the benefits of early detection, individuals with LFS report emotional and logistical burdens associated with intense screening. Existing research lacks a relational perspective on how distress manifests or is managed during the process of screening, especially within families affected by inherited cancer syndromes like LFS. Adults enrolled in the National Cancer Institute’s longitudinal LFS study completed interviews about screening experiences for themselves and for loved ones (e.g., parents, children, and non-LFS partners). Transcripts were analyzed using team-based thematic analysis. Eighteen participants (89% female, 89% with a cancer history, median = 47 years) completed interviews. Approximately half (56%) had children and all except one (94%) had one or more first-degree relatives with a cancer history. Participants reported a range of distress reactions related to pragmatic aspects, and the potential results, of recommended cancer screening that often surpassed concerns about personal results. Participants reported that distress regarding loved ones’ screening manifested along two common dimensions; participants expressed concern for family members’ screening results, and they attended to family members’ emotional distress in response to their own and their loved one’s screening. To manage this distress, participants evaluated their family’s emotional well-being, masked their own concerns to protect others, and created narratives that normalized cancer screening as a regular feature of daily life.