The Psychological Impact of a Pilot Whole-Body Screening Trial (SMOC) on individuals with Li –Fraumeni Syndrome — ASN Events
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The Psychological Impact of a Pilot Whole-Body Screening Trial (SMOC) on individuals with Li –Fraumeni Syndrome (#329)

Kate A McBride 1 2 , Mary-Anne Young 3 , Timothy E Schlub 1 , Mandy L Ballinger 4 , Judy Kirk 5 , Martin H Tattersall 2 , David M Thomas 6 , Gillian Mitchell 7
  1. Sydney School of Pubic Health, Sydney, NSW
  2. The Chris O'Brien Lifehouse, Sydney Medical School, Sydney, NSW
  3. Familial Cancer Service, Peter MacCallum Cancer Centre, Melbourne, VIC
  4. Research Division, Peter MacCallum Cancer Centre, Melbourne, VIC
  5. The Crown Princess Mary Cancer Centre, Centre for Cancer Research, Westmead, Westmead, NSW
  6. The Kinghorn Cancer Centre, Garvan Institute for Medical Research, Darlinghurst, NSW
  7. Familial Cancer Service, Peter MacCallum Cancer Centre, Melbourne, VIC

Individuals who have a germline TP53 mutation have Li-Fraumeni Syndrome (LFS) and a high risk of cancer-related morbidity and mortality. Effective cancer risk management is an important issue. A whole-body (WB) surveillance trial (SMOC) in adults with TP53 mutations has been established to estimate the prevalence and incidence of investigable lesions in these carriers.  The psychosocial impact of using WB MRI in individuals with LFS is unknown. 

To assess the psychosocial effects of participation in a WB screening program.

Fourteen individuals with germline TP53 mutations are enrolled. Participants have completed psychological questionnaires at baseline, and several time points post WB-MRI. They are also take part in two in-depth semi-structured interviews. The interviews explore factors influencing participants’ decisions to take part and evaluates their hopes for screening.. Interview recruitment will be ceased when data saturation is reached. The content of the transcripts are being analysed by thematic analysis, which is informed by grounded theory methodology.

48/54 (89%) of questionnaires have so far been completed by 12 participants. Hospital and Anxiety Depression Scales data indicates reductions in anxiety and depression from baseline. One participant scored highly on the scale at baseline, was found to have metastatic sarcoma on MRI and was withdrawn from the trial. Cancer Worry Scale scores either reduced slightly or remained the same. No participants had frequent cancer worry post-MRI, though two participants scored highly initially. Emerging themes from the interviews (N=16) indicate that the trial gives some TP53 carriers a sense of control and the reassurance that ‘something is being done’. However, participants are still realistic about their chances of being diagnosed with cancer. Conversely, some feel overwhelmed by the screening intensity.

Preliminary data suggest that the surveillance program is not adding to the psychological burden experienced by individuals with a TP53 mutation. Furthermore, the WB-MRI screening appears to be giving participants a sense of control though all participants are still realistic about their cancer risk.

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