Concerns about the consequences of cancer predisposition and relationships with quality of life in young adults with Li-Fraumeni syndrome.

Rowan Forbes Shepherd; Camella J Rising; Richard P Moser; Chloe O Huelsnitz; Patrick Boyd; Catherine Wilsnack; Alix G Sleight; William M P Klein; Allison Werner-Lin; Sadie P Hutson; Paul K J Han; Payal P Khincha

doi:10.1038/s41431-025-01984-w

PubMed · 41276692

Concerns about the consequences of cancer predisposition and relationships with quality of life in young adults with Li-Fraumeni syndrome.

Rowan Forbes Shepherd·Camella J Rising·Richard P Moser·Chloe O Huelsnitz·Patrick Boyd·Catherine Wilsnack·Alix G Sleight·William M P Klein·Allison Werner-Lin·Sadie P Hutson·Paul K J Han·Payal P Khincha

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Abstract

Li-Fraumeni syndrome (LFS) is an inherited condition associated with high multi-organ cancer risks from birth. Young adults (YAs; 18-39 years) with LFS experience psychosocial challenges that may negatively affect health-related quality of life (HRQOL). This study aimed to describe a specific psychosocial challenge, concerns about the consequences of LFS (CC-LFS), and investigate relationships among CC-LFS and HRQOL among YAs. An online survey assessed CC-LFS and HRQOL among YAs with LFS enrolled in a National Cancer Institute study. Regression analyses examined relationships between CC-LFS and HRQOL scores, adjusted for age, cancer, and history of mental health challenges. Of 37 total respondents (78% female; Mage = 31 years), 51% had a cancer history. Many reported past mental health challenges, including emotional problems (70%), depression/anxiety disorders (68%), and suicidal ideation (43%). Mean scores for mental (M = 65.8), physical (M = 67.5), and general (M = 63.9) HRQOL were lower than in the general population. Higher CC-LFS scores (M = 31/50, SD = 7.2) were associated with lower scores for each HRQOL domain. Adjusting for covariates, higher CC-LFS scores were associated with lower physical HRQOL (β = -0.491, 95% CI -0.76, -0.22, p < 0.001) and general HRQOL (β = -0.466, 95% CI -0.77, -0.16, p = 0.004), but not mental HRQOL (p = 0.102). CC-LFS accounted for significant proportions of unique variance in general (R2adj = 17.7%, p = 0.004) and physical HRQOL (R2adj = 20.4%, p < 0.001). Findings suggest YAs with LFS may experience substantial concerns, mental health challenges, and diminished HRQOL. Concerns about LFS consequences appear to be a psychosocial risk factor that clinicians and researchers might address through targeted interventions to improve YAs' psychosocial health.

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Humans Female Quality of Life Li-Fraumeni Syndrome Adult Young Adult Adolescent Male Genetic Predisposition to Disease Mental Health Journal Article

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Rowan Forbes Shepherd, Camella J Rising, Richard P Moser, Chloe O Huelsnitz, Patrick Boyd, Catherine Wilsnack, Alix G Sleight, William M P Klein, Allison Werner-Lin, Sadie P Hutson, Paul K J Han, Payal P Khincha. 2025-11-23. Concerns about the consequences of cancer predisposition and relationships with quality of life in young adults with Li-Fraumeni syndrome.. https://doi.org/10.1038/s41431-025-01984-w

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