Introduction
Germline TP53 mutation carriers have high risk of cancer. Effective management is an important issue. A whole-body (WB) MRI trial in adults with TP53 mutations has been established. The psychosocial impact of WB-MRI screening in these individuals is unknown.
Aim
This mixed methods study assesses the psychosocial effects of participation in a WB-MRI trial.
Methods
Participants (N = 18) completed psychological questionnaires including the Hospital Anxiety and Depression Scale (HADS), Cancer Worry Scale (CWS) and Impact of Events Scale (IES) at baseline and several time-points post WB-MRI. Linear mixed- modelling assessed short-term and long-term effects of WB-MRI. Two semi-structured interviews were also conducted with participants. Transcripts were analysed by thematic analysis.
Results
At baseline, 17/18 participants were below clinical cut offs for anxiety and depression and less than frequent cancer worry. Mean reduction in participants’ anxiety (HADS) from baseline to two weeks post WB-MRI was -0.93 (95% CI 0.01 to 1.85 p=0.048), depression (HADS) -0.43 (-2.25 to 0.55) and cancer worry (CWS) -0.36 (95% CI -2.55 to 1.52). Post WB-MRI scores showed cancer worry significantly reduced over time (p = 0.04). Qualitative themes show participants are emotionally contained by screening and that to them, ‘knowledge is power’ despite this currently being a baseless reassurance due to lack of evidence around efficacy of screening. Participants feel lucky to be participating and are motivated by their immediate concern of staying alive. Abandonment from research is concerning due to the emotional reassurance they receive from taking part. Screening is a burden to some and heightens the relentlessness nature of TP53.
Conclusion: Families with TP53 mutations need ongoing support due to the contagion of this mutation on the whole family system. WB screening may contain the condition by holding carriers emotionally despite the currently baseless reassurance of efficacy.