title: The psychosocial effects of the Li-Fraumeni Education and Early Detection (LEAD) program on individuals with Li-Fraumeni syndrome.
abstract: In the past 5 years, new screening protocols have been developed that provide improved cancer screening options for individuals with Li-Fraumeni syndrome (LFS). 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.
  
  
  
  We performed a qualitative study consisting of semistructured phone interviews conducted from December 2015 to February 2016 with 20 individuals attending the LFS screening program at MD Anderson Cancer Center.
  
  
  
  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 planned on continuing screening in the program.
  
  
  
  Our data indicate that the perceived benefits of screening outweigh the drawbacks of screening. Individuals in this screening program appeared to have improved psychosocial well-being because of their access to the screening program.Genet Med advance online publication 16 March 2017.
authors.affiliation: Clinical Cancer Genetics, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA.
authors.forename: Jessica
authors.identifier: 0000-0001-5575-6356
authors.initials: J
authors.lastname: Ross
authors.affiliation: Department of Genetics, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA.
authors.forename: Jasmina
authors.identifier: 0000-0002-1657-6034
authors.initials: J
authors.lastname: Bojadzieva
authors.affiliation: The University of Texas Graduate School of Biomedical Sciences at Houston, Houston, Texas, USA.|Department of Behavioral Science, University of Texas MD Anderson Cancer Center, Houston, Texas, USA.
authors.forename: Susan
authors.initials: S
authors.lastname: Peterson
authors.affiliation: The University of Texas Graduate School of Biomedical Sciences at Houston, Houston, Texas, USA.|Department of Obstetrics, Gynecology and Reproductive Sciences, McGovern Medical School, The University of Texas Health Science Center, Houston, Texas, USA.
authors.forename: Sarah Jane
authors.initials: SJ
authors.lastname: Noblin
authors.affiliation: Department of Behavioral Science, University of Texas MD Anderson Cancer Center, Houston, Texas, USA.
authors.forename: Rebecca
authors.identifier: 0000-0002-4274-0408
authors.initials: R
authors.lastname: Yzquierdo
authors.affiliation: Department of Pediatrics, University of Texas MD Anderson Cancer Center, Houston, Texas, USA.
authors.forename: Martha
authors.identifier: 0000-0003-2020-3350
authors.initials: M
authors.lastname: Askins
authors.affiliation: Department of Genetics, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA.|The University of Texas Graduate School of Biomedical Sciences at Houston, Houston, Texas, USA.
authors.forename: Louise
authors.initials: L
authors.lastname: Strong
mesh_terms: D000293:Adolescent; D000328:Adult; D055088:Early Detection of Cancer / Q000379:methods; D004644:Emotions; D005260:Female; D020022:Genetic Predisposition to Disease; D018095:Germ-Line Mutation; D006801:Humans; D016864:Li-Fraumeni Syndrome / Q000175:diagnosis / Q000453:epidemiology* / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D010465:Perception; D062486:Public Health Surveillance; D036301:Qualitative Research; D013781:Texas / Q000453:epidemiology; D055815:Young Adult