Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Sep 10;24(4):71.
doi: 10.1007/s10689-025-00495-3.

Navigating disclosure in new romantic partnerships as an adolescent or young adult with Li-Fraumeni syndrome

Camella J Rising  1 , Chloe O Huelsnitz  2 , Rowan Forbes Shepherd  3 , Catherine Wilsnack  3 , Patrick Boyd  4 , Alix G Sleight  5 , Ashley S Thompson  3 , Sadie P Hutson  6 , Payal P Khincha  3 , Allison Werner-Lin  7
Affiliations

Navigating disclosure in new romantic partnerships as an adolescent or young adult with Li-Fraumeni syndrome

Camella J Rising et al. Fam Cancer. .

Abstract

Li-Fraumeni syndrome (LFS) is an early-onset cancer syndrome caused by pathogenic germline TP53 variants. Adolescents and young adults (AYAs) with LFS may have challenges navigating new romantic partnerships given the significant effects of LFS on multiple life domains that also affect partners (e.g., reproductive decision-making). Disclosing LFS-related information to new partners may be especially difficult given the uncertainty, complexity, and chronicity of LFS. This qualitative-descriptive study aimed to explore AYAs' LFS disclosure decisions and experiences in new romantic partnerships. Participants were individuals with LFS aged 15-39 years at enrollment in a National Cancer Institute study. The analytic sample included 33 AYAs who completed at least one telephone interview. Greene's disclosure decision-making model guided thematic analysis. Participants were mostly female (67%) and married/in a long-term relationship (58%), with mean age 29 years and ≥ 1 primary cancer (61%). Key factors in LFS disclosure decision-making included perceived relevancy to partners (e.g., future children's genetic risk), partner traits (e.g., trustworthiness), and relationship quality (e.g., closeness). AYAs described LFS disclosures in new partnerships as a process. Disclosing LFS diagnosis often occurred early to fulfill a sense of moral obligation and emotionally self-protect from future rejection, while subsequent LFS disclosures depended on relationship quality and the topic's emotional valence or complexity. Partners often earned AYAs' trust by demonstrating a willingness to learn about and try to understand LFS. Clinicians and LFS communities could support AYAs by providing opportunities to discuss, normalize, and ameliorate challenges with LFS disclosures in new romantic partnerships (e.g., peer support groups, psychotherapy).

Keywords: Adolescents and young adults; Cancer; Communication; Disclosure; Genetic; Li-Fraumeni syndrome; Relationships.

PubMed Disclaimer

Conflict of interest statement

Declarations. Conflict of interests: We disclose that the senior author on this manuscript, Dr. Allison Werner-Lin, is on the Editorial Board of Familial Cancer. The authors have no other conflicting or competing interests to disclose. We disclose that the senior author on this manuscript, Dr. Allison Werner-Lin, is on the Editorial Board of Familial Cancer. The authors have no other conflicting or competing interests to disclose. Ethical approval: This study was approved by the National Institutes of Health (NIH) IRB (NIH Protocol 11-C-0255, ClinicalTrials.gov, Identifier NCT01443468). Consent to participate: All participants provided consent before beginning audio-recorded telephone interviews.

Figures

Fig. 1
Fig. 1
Disclosure decision-making model concepts and definitions [14]
Fig. 2
Fig. 2
AYAs’ LFS disclosure experiences with new romantic partners
See this image and copyright information in PMC

Similar articles

See all similar articles

References

    1. Forbes Shepherd R, Lewis A, Keogh LA, Werner-Lin A, Delatycki MB, Forrest LE (2018) A systematic review of how young people live with inherited disease: what can we learn for Li-Fraumeni syndrome? J Adolesc Young Adult Oncol 7:525–545. 10.1089/jayao.2018.0028 - PubMed
    1. Werner-Lin A, Forbes Shepherd R, Rising CJ, Thompson AS, Huelsnitz C, Wilsnack C, Boyd P, Sleight AG, Hutson S, Khincha PP (2023) How do young people with a hereditary cancer predisposition syndrome understand and experience cancer survivorship? With Li-Fraumeni syndrome, it’s just an intermission. Psychooncology 32:375–382. 10.1002/pon.6080 - PubMed
    1. Werner-Lin A, Hoskins LM, Doyle MH, Greene MH (2012) Cancer doesn’t have an age’: genetic testing and cancer risk management in BRCA1/2 mutation-positive women aged 18–24. Health 16:636–654. 10.1177/1363459312442420 - PubMed
    1. Bond E, Yashar B, Else T, Osborne J, Marvin M (2022) Disclosure of genetic risk to dating partners among young adults with von Hippel-Lindau disease. Fam Cancer 22:203–215. 10.1007/s10689-022-00311-2 - PubMed
    1. Hoskins LM, Roy K, Peters JA, Loud JT, Greene MH (2008) Disclosure of positive BRCA1/2-mutation status in young couples: the journey from uncertainty to bonding through partner support. Fam Syst Health 26:296. 10.1037/a0012914 - PMC - PubMed

LinkOut - more resources