ArticleGenetics in medicine : official journal of the American College of Medical Genetics2017
The psychosocial effects of the Li-Fraumeni Education and Early Detection (LEAD) program on individuals with Li-Fraumeni syndrome.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers.
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The trial behind it
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Who cites it
26 citing papers in PubMed, 49 citations in OpenAlex.
- Non-invasive screening in hereditary cancer: a randomized controlled trial to test cell-free DNA-based early detection in the CHARM consortium.European journal of human genetics : EJHG · 2026Trial
- Whole-body magnetic resonance imaging as surveillance for subsequent malignancies in preadolescent, adolescent, and young adult survivors of germline retinoblastoma: An update.Pediatric blood & cancer · 2020Trial
- Concerns about the consequences of cancer predisposition and relationships with quality of life in young adults with Li-Fraumeni syndrome.European journal of human genetics : EJHG · 2026Article
- Psychosocial aspects of RUNX1-familial platelet disorder in adolescents and young adults: "The fear of knowing it could happen sometime down the road".Journal of genetic counseling · 2026Article
- Review
- Provider and patient perceptions on the usage of whole-body magnetic resonance imaging in oncology: a scoping review.Cancer imaging : the official publication of the International Cancer Imaging Society · 2026Review
- Digital Health Tools Embedded in a Cancer Genetics Clinic: Observational Study.JMIR formative research · 2026Observational
- Health-related quality of life and fear of progression in individuals with Li-Fraumeni syndrome.Journal of genetic counseling · 2025Article
- Feasibility of whole-body MRI for cancer screening in children and young people with ataxia telangiectasia: A mixed methods cross-sectional study.Cancer medicine · 2024Article
- Validating Risk Prediction Models for Multiple Primaries and Competing Cancer Outcomes in Families With Li-Fraumeni Syndrome Using Clinically Ascertained Data.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2024Article
- Newborn Screening for Li-Fraumeni Syndrome: Patient Perspectives.Research square · 2024Article
- "I just wanted more": Hereditary cancer syndromes patients' perspectives on the utility of circulating tumour DNA testing for cancer screening.European journal of human genetics : EJHG · 2024Article
- The Use of Social Media to Express and Manage Medical Uncertainty in Dyskeratosis Congenita: Content Analysis.JMIR infodemiology · 2024Article
- Current and new frontiers in hereditary cancer surveillance: Opportunities for liquid biopsy.American journal of human genetics · 2023Review
- LFSPROShiny: an interactive R/Shiny app for prediction and visualization of cancer risks in families with deleterious germlinemedRxiv : the preprint server for health sciences · 2023Article
- Lessons learnt from the clinico-genomic profiling of families with Li Fraumeni syndrome at a tertiary care centre in North India.Ecancermedicalscience · 2023Article
- Utility of interim blood tests for cancer screening in Li-Fraumeni syndrome.Familial cancer · 2022Article
- Cancer incidence, patterns, and genotype-phenotype associations in individuals with pathogenic or likely pathogenic germline TP53 variants: an observational cohort study.The Lancet. Oncology · 2021Observational
- Medical guidelines for Li-Fraumeni syndrome 2019, version 1.1.International journal of clinical oncology · 2021Article
- Family Health Leaders: Lessons on Living with Li-Fraumeni Syndrome across Generations.Family process · 2020Article
Corrections and comments
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Authors and funding
7 authors at 2 institutions in 1 country.
Funding
Abstract
purposeIn 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.
methodsWe 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.
resultsData 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.
conclusionOur 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.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.