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<p>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; <i>M</i><sub>age</sub> = 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 (<i>M</i> = 65.8), physical (<i>M</i> = 67.5), and general (<i>M</i> = 63.9) HRQOL were lower than in the general population. Higher CC-LFS scores (<i>M</i> = 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, <i>p</i> &lt; 0.001) and general HRQOL (β = −0.466, 95% CI −0.77, −0.16, <i>p</i> = 0.004), but not mental HRQOL (<i>p</i> = 0.102). CC-LFS accounted for significant proportions of unique variance in general (<i>R</i><sup>2</sup><sub>adj</sub> = 17.7%, <i>p</i> = 0.004) and physical HRQOL (<i>R</i><sup>2</sup><sub>adj</sub> = 20.4%, <i>p</i> &lt; 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.</p>

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

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年11月23日

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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

摘要

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.