Familial Cancer

, Volume 16, Issue 3, pp 423–432 | Cite as

Psychosocial morbidity in TP53 mutation carriers: is whole-body cancer screening beneficial?

  • Kate A. McBrideEmail author
  • Mandy L. Ballinger
  • Timothy E. Schlub
  • Mary-Anne Young
  • Martin H. N. Tattersall
  • Judy Kirk
  • Ros Eeles
  • Emma Killick
  • Leslie G. Walker
  • Sue Shanley
  • David M. Thomas
  • Gillian Mitchell
Original Article


Germline TP53 mutation carriers are at high risk of developing a range of cancers. Effective cancer risk management is an important issue for these individuals. We assessed the psychosocial impact in TP53 mutation carriers of WB-MRI screening as part of the Surveillance in Multi-Organ Cancer (SMOC+) protocol, measuring their unmet needs, anxiety and depression levels as well as cancer worry using psychological questionnaires and in-depth interviews about their experiences of screening. We present preliminary psychosocial findings from 17 participants during their first 12 months on the trial. We found a significant reduction in participants’ mean anxiety from baseline to two weeks post WB-MRI (1.2, 95% CI 0.17 to 2.23 p = 0.025), indicative of some benefit. Emerging qualitative themes show most participants are emotionally supported and contained by the screening program and are motivated by their immediate concern about staying alive, despite being informed about the current lack of evidence around efficacy of screening for people with TP53 mutations in terms of cancer morbidity or mortality. For those that do gain emotional reassurance from participating in the screening study, feelings of abandonment by the research team are a risk when the study ends. For others, screening was seen as a burden, consistent with the relentless nature of cancer risk associated with Li-Fraumeni syndrome, though these patients still declared they wished to participate due to their concern with staying alive. Families with TP53 mutations need ongoing support due to the impact on the whole family system. These findings suggest a comprehensive multi-organ screening program for people with TP53 mutations provides psychological benefit independent of an impact on cancer morbidity and mortality associated with the syndrome. The benefits of a multi-organ screening program will be greater still if the screening tests additionally reduce the cancer morbidity and mortality associated with the syndrome. These findings may also inform the care of individuals and families with other multi-organ cancer predisposition syndromes.


Li-Fraumeni syndrome TP53 Screening Hereditary cancer Psychosocial Mixed methods 

Supplementary material

10689_2016_9964_MOESM1_ESM.doc (812 kb)
Supplementary material 1 (DOC 811 KB)


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Copyright information

© Springer Science+Business Media Dordrecht 2017

Authors and Affiliations

  • Kate A. McBride
    • 1
    • 2
    Email author
  • Mandy L. Ballinger
    • 3
  • Timothy E. Schlub
    • 2
  • Mary-Anne Young
    • 4
  • Martin H. N. Tattersall
    • 5
  • Judy Kirk
    • 6
  • Ros Eeles
    • 7
  • Emma Killick
    • 8
  • Leslie G. Walker
    • 9
  • Sue Shanley
    • 4
  • David M. Thomas
    • 3
  • Gillian Mitchell
    • 4
    • 10
  1. 1.School of Science and Health and Centre for Health ResearchWestern Sydney UniversityCampbelltownAustralia
  2. 2.Sydney School of Public HealthCamperdownAustralia
  3. 3.The Kinghorn Cancer CentreGarvan Institute of Medical ResearchDarlinghurstAustralia
  4. 4.Familial Cancer ClinicPeter MacCallum Cancer CentreE. MelbourneAustralia
  5. 5.Department of Cancer Medicine, The Chris O’Brien LifehouseSydney Medical SchoolCamperdownAustralia
  6. 6.The Familial Cancer ServiceCrown Princess Mary Cancer CentreWestmeadAustralia
  7. 7.OncogeneticsThe Institute of Cancer ResearchLondonUK
  8. 8.Medical Oncology UnitUniversity Hospital Southampton NHS Foundation TrustSouthamptonUK
  9. 9.University of HullKingston upon HullUK
  10. 10.Sir Peter MacCallum Dept. of OncologyUniversity of MelbourneParkvilleAustralia

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