A brief feasibility report on an online psychosocial support intervention for adults with Li-Fraumeni syndrome

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.