Psychosocial burdens and unmet supportive care needs of partners and relatives of individuals with Li-Fraumeni syndrome: A mixed-methods study.

ABSTRACT: Li-Fraumeni syndrome (LFS) is a rare but highly penetrant cancer predisposition syndrome caused by pathogenic variants in the tumor suppressor gene TP53. Individuals diagnosed with LFS should adhere to intense surveillance programs for early tumor detection. The literature highlights several psychosocial challenges for this group. However, the scarce and mainly qualitative research on LFS families suggests that people close to individuals with LFS (e.g., partners, spouses, kin, friends) are likely also burdened by this condition. Therefore, the aim of our study was to assess their unmet supportive care needs (uSCN) as well as the psychosocial burdens and challenges they face. For this convergent mixed-methods study, first, we used validated questionnaires: the Supportive Care Needs Survey

SUBMITTER: Kiermeier S 

PROVIDER: S-EPMC12662767 | biostudies-literature | 2025 Dec

REPOSITORIES: biostudies-literature