title: Psychosocial morbidity in TP53 mutation carriers: is whole-body cancer screening beneficial?
abstract: 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.
authors.affiliation: School of Science and Health and Centre for Health Research, Western Sydney University, Building 3, Centre for Health Research, Campbelltown, NSW, 2560, Australia. k.mcbride@westernsydney.edu.au.|Sydney School of Public Health, Camperdown, NSW, 2006, Australia. k.mcbride@westernsydney.edu.au.
authors.forename: Kate A
authors.initials: KA
authors.lastname: McBride
authors.affiliation: The Kinghorn Cancer Centre, Garvan Institute of Medical Research, Darlinghurst, NSW, 2010, Australia.
authors.forename: Mandy L
authors.initials: ML
authors.lastname: Ballinger
authors.affiliation: Sydney School of Public Health, Camperdown, NSW, 2006, Australia.
authors.forename: Timothy E
authors.initials: TE
authors.lastname: Schlub
authors.affiliation: Familial Cancer Clinic, Peter MacCallum Cancer Centre, E. Melbourne, VIC, 3002, Australia.
authors.forename: Mary-Anne
authors.initials: MA
authors.lastname: Young
authors.affiliation: Department of Cancer Medicine, The Chris O'Brien Lifehouse, Sydney Medical School, Camperdown, NSW, 2006, Australia.
authors.forename: Martin H N
authors.initials: MHN
authors.lastname: Tattersall
authors.affiliation: The Familial Cancer Service, Crown Princess Mary Cancer Centre, Westmead, NSW, 2145, Australia.
authors.forename: Judy
authors.initials: J
authors.lastname: Kirk
authors.affiliation: Oncogenetics, The Institute of Cancer Research, London, UK.
authors.forename: Ros
authors.initials: R
authors.lastname: Eeles
authors.affiliation: Medical Oncology Unit, University Hospital Southampton NHS Foundation Trust, Southampton, UK.
authors.forename: Emma
authors.initials: E
authors.lastname: Killick
authors.affiliation: University of Hull, Kingston upon Hull, UK.
authors.forename: Leslie G
authors.initials: LG
authors.lastname: Walker
authors.affiliation: Familial Cancer Clinic, Peter MacCallum Cancer Centre, E. Melbourne, VIC, 3002, Australia.
authors.forename: Sue
authors.initials: S
authors.lastname: Shanley
authors.affiliation: The Kinghorn Cancer Centre, Garvan Institute of Medical Research, Darlinghurst, NSW, 2010, Australia.
authors.forename: David M
authors.initials: DM
authors.lastname: Thomas
authors.affiliation: Familial Cancer Clinic, Peter MacCallum Cancer Centre, E. Melbourne, VIC, 3002, Australia.|Sir Peter MacCallum Dept. of Oncology, University of Melbourne, Parkville, VIC, Australia.
authors.forename: Gillian
authors.initials: G
authors.lastname: Mitchell
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D020022:Genetic Predisposition to Disease / Q000235:genetics; D006579:Heterozygote; D006801:Humans; D008297:Male; D008403:Mass Screening / Q000523:psychology*; D008875:Middle Aged; D009154:Mutation; D016159:Tumor Suppressor Protein p53 / Q000235:genetics*; D055815:Young Adult
chemical_list: C495901:TP53 protein, human; D016159:Tumor Suppressor Protein p53
keywords: Hereditary cancer; Li-Fraumeni syndrome; Mixed methods; Psychosocial; Screening; TP53