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@ARTICLE{Kiermeier:310298,
author = {S. Kiermeier and C. Sauer and M. Helaß and J. Nees and M.
Keymling$^*$ and F. Silchmüller and C. M. Dutzmann and C.
P. Kratz and S. Schott and I. Maatouk},
title = {{A} brief feasibility report on an online psychosocial
support intervention for adults with {L}i-{F}raumeni
syndrome.},
journal = {Frontiers in psychology},
volume = {16},
issn = {1664-1078},
address = {Lausanne},
publisher = {Frontiers Research Foundation},
reportid = {DKFZ-2026-00521},
pages = {1688050},
year = {2026},
abstract = {Li-Fraumeni syndrome (LFS) is a rare autosomal dominant
cancer predisposition syndrome characterized by a markedly
elevated lifetime cancer risk. Despite the substantial
psychological burden associated with LFS, tailored
psychosocial interventions remain unavailable. Acceptance
and commitment therapy (ACT) and cognitive behavioral
therapy (CBT) are evidence-based approaches widely applied
in psycho-oncological care; however, no intervention has
been specifically adapted for individuals with LFS.
Consequently, we developed OnLiFe, an online self-management
program designed to meet the unique needs of this population
and investigated its acceptability and practicality in a
small adult cohort.OnLiFe comprises six modules focusing on
psychoeducation about emotions, mindfulness practices, and
resource activation. Acceptability and practicality were
assessed in terms of comprehension and satisfaction with
content, usefulness, simplicity, and integrability for each
module and content element. Qualitative feedback was
collected through open-ended questions and analyzed using
qualitative content analysis.Nine female participants (mean
age 46.0 ± 7.1 years) enrolled, of whom four completed all
modules. Participant satisfaction with OnLiFe was rated
moderate to high, while perceived helpfulness of the content
showed relatively lower ratings. Qualitative data indicated
that the intervention was perceived as too lengthy and that
participants' busy schedules limited full engagement.Given
the distinct challenges of LFS, tailored psychosocial
support is required. Despite careful theoretical
considerations, OnLiFe showed mixed results regarding
acceptability and practicality. Addressing time constraints
will be essential, and future studies are warranted to
optimize and determine the efficacy of an adapted version of
OnLiFe.},
keywords = {Li–Fraumeni syndrome (Other) / cancer (Other) / cancer
predisposition syndrome (Other) / eHealth (Other) /
psychooncology (Other)},
cin = {E010},
ddc = {150},
cid = {I:(DE-He78)E010-20160331},
pnm = {315 - Bildgebung und Radioonkologie (POF4-315)},
pid = {G:(DE-HGF)POF4-315},
typ = {PUB:(DE-HGF)16},
pubmed = {pmid:41778070},
pmc = {pmc:PMC12951781},
doi = {10.3389/fpsyg.2025.1688050},
url = {https://inrepo02.dkfz.de/record/310298},
}