The psychosocial effects of the Li-Fraumeni Education and Early Detection (LEAD) program on individuals with Li-Fraumeni syndrome

Abstract

Purpose In the past five years new screening protocols have been developed that provide improved cancer screening options for individuals with Li-Fraumeni Syndrome. Very little has been published on the psychosocial impact of these screening protocols. The goals of this study were to determine how participation in screening impacts individuals psychosocially, to examine the benefits and drawbacks of screening, and to evaluate possible barriers to continued screening. Methods We performed a qualitative study consisting of semi-structured phone interviews conducted from December 2015-February 2016 with 20 individuals attending the LFS screening program at M.D. Anderson Cancer Center. Results Data analysis showed that benefits of screening include early detection, peace of mind, centralized screening, knowledge providing power, and screening making LFS seem more livable. Perceived drawbacks included logistical issues, difficulty navigating the system, screening being draining, and significant negative emotional reactions such as anxiety, fear, and skepticism. Regardless of the emotions that were present, 100% of participants plan on continuing screening in the program. Conclusion Our data indicates that the perceived benefits of screening outweigh the drawbacks of screening. Individuals in this screening program appear to have improved psychosocial well-being because of their access to the screening program.

Men's experiences of recontact about a potential increased risk of prostate cancer due to Lynch Syndrome: “Just another straw on the stack”

“…Overall, the findings suggest that participants comprehended the new risk information and integrated it into existing beliefs about their LS carrier status, including their previous personal and familial experiences of LS. The findings contribute to a small body of emerging research assessing the psychosocial impact of undergoing research-based comprehensive screening for multiple malignancies (Barez, Blasco, Fernandez-Castro, & Viladrich, 2009;McBride et al, 2017;Ross et al, 2017).…”

“…The availability of research-based screening was significant for men in this study who live with multiple cancer risks as a result of their LS status. The perceived benefits may extend beyond reducing morbidity and mortality to include psychological benefits, such as a source of emotional support and containment for patients (Lammens et al, 2010;McBride et al, 2017;Ross et al, 2017). (Barez et al, 2009;Beckjord, Glinder, Langrock, & Compas, 2009;Benyamini, Nouman, & Alkalay, 2016).…”

Risk of multiple primary cancer diagnosis over age in families of Li-Fraumeni syndrome: a single institution perspective

“…Studies have shown that this intensive cancer surveillance protocol has led to the early detection of primary cancers usually only requiring resection instead of chemotherapy and/or radiation, both of which have potential for contributing to treatment related late effects 2 . Once identified early, treatment for carriers with a new primary can be quickly assessed increasing the likelihood of a positive outcome after early diagnosis for participants, which has been stated as a key benefit for continued screening 22,23 . However, clinical studies of this rigorous screening protocol have reported to have psychosocial drawbacks 22,23 .…”

“…Once identified early, treatment for carriers with a new primary can be quickly assessed increasing the likelihood of a positive outcome after early diagnosis for participants, which has been stated as a key benefit for continued screening 22,23 . However, clinical studies of this rigorous screening protocol have reported to have psychosocial drawbacks 22,23 . Nevertheless, early detection and peace of mind after results disclosure are noted as benefits gained through the screening process that outweigh the drawbacks 23 .…”

Translating genomic risk into an early detection strategy for sarcoma

“…Psychological distress resulting from undergoing inappropriate surveillance has also been postulated as a justification for caution . However, TP53 mutation carriers participating in surveillance derive psychological benefit . The recent whole‐body MRI data are changing this situation, with the American Association of Cancer Researchers and the US National Comprehensive Cancer Network Guidelines for management of LFS issuing surveillance recommendations that include whole‐body MRI.…”