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

Familial Cancer

Volumn 16, Issue 3, 2017, Pages 423-432

  McBride, Kate A ^a,b   Ballinger, Mandy L ^c   Schlub, Timothy E ^b   Young, Mary Anne ^d   Tattersall, Martin H N ^e   Kirk, Judy ^f   Eeles, Ros ^g   Killick, Emma ^h   Walker, Leslie G ⁱ   Shanley, Sue ^d   Thomas, David M ^c   Mitchell, Gillian ^d,j  

^a UNIVERSITY OF WESTERN SYDNEY   (Australia)

^b UNIVERSITY OF SYDNEY   (Australia)

^c GARVAN INSTITUTE OF MEDICAL RESEARCH   (Australia)

^d PETER MACCALLUM CANCER CENTRE   (Australia)

^e UNIVERSITY OF SYDNEY   (Australia)

^f Crown Princess Mary Cancer Centre   (Australia)

^g INSTITUTE OF CANCER RESEARCH   (United Kingdom)

^h UNIVERSITY HOSPITAL SOUTHAMPTON NHS FOUNDATION TRUST   (United Kingdom)

ⁱ UNIVERSITY OF HULL   (United Kingdom)

^j UNIVERSITY OF MELBOURNE   (Australia)

more..

Author keywords

Hereditary cancer; Li Fraumeni syndrome; Mixed methods; Psychosocial; Screening; TP53

Indexed keywords

PROTEIN P53; TP53 PROTEIN, HUMAN;

ADULT; AGED; ANXIETY; ARTICLE; CANCER EPIDEMIOLOGY; CANCER RISK; CANCER SCREENING; CLINICAL ARTICLE; DEPRESSION; EMOTION; FEMALE; GERMLINE MUTATION; HETEROZYGOTE; HOSPITAL ANXIETY AND DEPRESSION SCALE; HUMAN; IMPACT OF EVENTS SCALE; LI-FRAUMENI SYNDROME; LIPOSARCOMA; MALE; METASTASIS; MORBIDITY; MULTIPLE CANCER; PATIENT WORRY; PRIMARY TUMOR; PRIORITY JOURNAL; PROSTATE CANCER; PSYCHOSOCIAL CARE; PSYCHOSOCIAL DISORDER; RECURRENT DISEASE; SCREENING TEST; WHOLE BODY MRI; CLINICAL TRIAL; GENETIC PREDISPOSITION; GENETICS; MASS SCREENING; MIDDLE AGED; MUTATION; PSYCHOLOGY; YOUNG ADULT;

ADULT; AGED; FEMALE; GENETIC PREDISPOSITION TO DISEASE; HETEROZYGOTE; HUMANS; MALE; MASS SCREENING; MIDDLE AGED; MUTATION; TUMOR SUPPRESSOR PROTEIN P53; YOUNG ADULT;

EID: 85010726029     PISSN: 13899600     EISSN: 15737292     Source Type: Journal    
DOI: 10.1007/s10689-016-9964-7     Document Type: Article

References (42)

1. Malkin D (2011) Li-fraumeni syndrome. Genes cancer 2(4):475–484
2. Kamihara J, Rana HQ, Garber JE (2014) Germline TP53 Mutations and the Changing Landscape of Li-Fraumeni Syndrome. Hum Mutat 35(6):654–662. doi:10.1002/humu.22559
3. McBride KA, Ballinger ML, Killick E et al (2014) Li-Fraumeni syndrome: cancer risk assessment and clinical management. Nature Reviews. Clin Oncol 11(5):260–271. doi:10.1038/nrclinonc.2014.41
4. Li FP, Fraumeni JF, Mulvihill JJ, et al. (1988) A cancer family syndrome in 24 kindreds. Cancer Research 48(18): 5358–5362
5. Ruijs MWG, Verhoef S, Rookus MA et al (2010) TP53 germline mutation testing in 180 families suspected of Li-Fraumeni syndrome: mutation detection rate and relative frequency of cancers in different familial phenotypes. J Med Genet 47(6):421–428. doi:10.1136/jmg.2009.073429
6. Bougeard G, Renaux-Petel M, Flama J-M, et al. (2015) Revisiting Li-Fraumeni Syndrome from TP53 mutation carriers. Journal of Clinical Oncology Published ahead of print: doi: 10.1200/JCO.2014.59.5728
7. Hwang SJ, Lozano G, Amos CI, Strong LC (2003) Germline p53 mutations in a cohort with childhood sarcoma: Sex differences in cancer risk. Am J Hum Genet 72(4):975–983
8. Lustbader ED, Williams WR, Bondy ML, Strom S, Strong LC (1992) Segregation analysis of cancer in families of childhood soft-tissue-sarcoma patients. Am J Hum Genet 51(2):344–356
9. Limacher JM, Frebourg T, Natarajan-Ame S, Bergerat JP (2001) Two metachronous tumors in the radiotherapy fields of a patient with Li-Fraumeni syndrome. Int J Cancer 96(4):238–242. doi:10.1002/ijc.1021
10. Chadaz T, Hobbs SK, Son H (2013) Chest Wall Sarcoma F-18-FDG PET/CT in a Patient With Li-Fraumeni Syndrome. Clin Nucl Med 38(10):818–820
11. Peters J, Kene R, Bremer R, Givens S, Savage S, Mai P (2015) Easing the Burden: Describing the Role of Social, Emotional and Spiritual Support in Research Families with Li-Fraumeni Syndrome. Journal of Genetic Counseling
12. Evans DG, Lunt P, Clancy T, Eeles R (2010) Childhood predictive genetic testing for Li-Fraumeni syndrome. Familial Cancer 9(1):65–69. doi:10.1007/s10689-009-9245-9
13. Australia New Zealand Clinical Trials Registry (2013 September 4) A pilot surveillance study investigating whole body magnetic resonance imaging and other diagnostic procedures in people at high risk of cancer (SMOC) ACTRN12613000987763. http://www.ANZCTR.org.au/ACTRN12613000987763.aspx. Sydney (NSW), NHMRC Clinical Trials Centre, University of Sydney (Australia)
14. ClinicalTrials.gov (2011 October 31) LIFSCREEN: Evaluation of Whole Body MRI for Early Detection of Cancers in Subjects With P53 Mutation (Li-Fraumeni Syndrome) NCT01464086. Bethsheda (MD), National Library of Medicine (US)
15. Clinicaltrials.gov (2012 27 November) Magnetic Resonance Imaging Screening in Li Fraumeni Syndrome (SIGNIFY)NCT01737255. In (US) NLoM (ed). vol. 28 January. Bethsheda (MD)
16. Patenaude AF, Schneider KA, Kieffer SA et al (1996) Acceptance of invitations for p53 and BRCA1 predisposition testing: Factors influencing potential utilization of cancer genetic testing. Psycho-Oncology 5(3):241–250. doi:10.1002/(sici)1099-1611(199609)5:3 3.3.co;2-y
17. Lammens CRM, Bleiker EMA, Aaronson NK et al (2010) Regular surveillance for Li-fraumeni syndrome: advice, adherence and perceived benefits. Familial Cancer 9(4):647–654. doi:10.1007/s10689-010-9368-z
18. Maheu C, Vodermaier A, Rothenmund H et al (2010) Pancreatic cancer risk counselling and screening: impact on perceived risk and psychological functioning. Familial Cancer 9(4):617–624. doi:10.1007/s10689-010-9354-5
19. Hutton J, Walker LG, Gilbert FJ et al (2011) Psychological impact and acceptability of magnetic resonance imaging and X-ray mammography: the MARIBS Study. Br J Cancer 104(4):578–586. doi:10.1038/bjc.2011.1
20. Gopie JP, Vasen HFA, Tibben A (2012) Surveillance for hereditary cancer: Does the benefit outweigh the psychological burden?-A systematic review. Critical Reviews in Oncology Hematology 83(3): doi:10.1016/j.critrevonc.2012.01.004
21. Teddlie C, Tashakkori A (2009) The foundations of mixed methods research: Integrating quantitative and qualitative techniques in the social and behavioural sciences. Sage, Thousand Oaks, CA
22. Tashakkori A, Teddlie C (2010) Sage Handbook of Mixed Methods in Social & Behavioral Research, 2nd edn. Sage, Thousand Oaks
23. Creswell JW (1994) Research design: Qualitative and quantitative approaches. Thousand Oaks, CA
24. Patton MQ (2002) Qualitative Research and evaluation methods. Sage, Thousand Oaks
25. Zigmond AS, Snaith RP (1983) The Hospital Anxiety and depression scale. Acta Psychiatr Scand 67(6):361–370. doi:10.1111/j.1600-0447.1983.tb09716.x
26. Horowitz M, Wilner N, Alvarez W (1979) Impact of event scale—measure of subjective stress. Psychosom Med 41(3):209–218
27. Lerman C, Narod S, Schulman K, et al. (1996) BRCA1 testing in families with hereditary breast-ovarian cancer - A prospective study of patient decision making and outcomes. Jama-Journal of the American Medical Association 275(24): 1885–92 doi:10.1001/jama.275.24.1885
28. Lerman C, Trock B, Rimer BK, Jepson C, Brody D, Boyce A (1991) Psychological side-effects of breast cancer screening. Health Psychol 10(4):259–267. doi:10.1037/0278-6133.10.4.259
29. Douma KFL, Aaronson NK, Vasen HFA et al (2010) Psychological distress and use of psychosocial support in familial adenomatous polyposis. Psycho-Oncology 19(3):289–298. doi:10.1002/pon.1570
30. IBM Corp (2012) IBM SPSS Statistics for Windows, Version 21.0, IBM Corp., Armonk, NY
31. Custers JAE, van den Berg SW, van Laarhoven HWM, Bleiker EMA, Gielissen MFM, Prins JB (2014) The cancer worry scale detecting fear of recurrence in breast cancer survivors. Cancer Nurs 37(1):E44–E50. doi:10.1097/NCC.0b013e3182813a17
32. Lammens CRM, Aaronson NK, Wagner A et al (2010) Genetic testing in li-fraumeni syndrome: uptake and psychosocial consequences. J Clin Oncol 28(18):3008–3014. doi:10.1200/jco.2009.27.2112
33. Peterson SK, Pentz RD, Marani SK et al (2008) Psychological functioning in persons considering genetic counseling and testing for Li-Fraumeni syndrome. Psycho-Oncology 17(8):783–789. doi:10.1002/pon.1352
34. Dewey M, Schink T, Dewey CF (2007) Claustrophobia during magnetic resonance imaging: Cohort study in over 55,000 patients. J Magn Reson Imaging 26(5):1322–1327. doi:10.1002/jmri.21147
35. Tazegul G, Etcioglu E, Yildiz F, Yildiz R, Tuney D (2015) Can MRI related patient anxiety be prevented? Magn Reson Imaging 33(1):180–183. doi:10.1016/j.mri.2014.08.024
36. Caruso A, Bongiorno L, Vallini I, Russo P, Tomao F, Grandinetti ML (2006) Breast cancer and distress resulting from magnetic resonance imaging (MRI): the impact of a psychological intervention of emotional and informative support. J Exp Clin Cancer Res 25(4):499–505
37. Townsend A, Cox SM (2013) Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada. Bmc Med Ethics 14: doi:10.1186/1472-6939-14-40
38. Power TE, Robinson JW, Bridge P, Bernier FP, Gilchrist DM (2011) Distress and psychosocial needs of a heterogeneous high risk familial cancer population. J Genet Couns 20(3):249–269. doi:10.1007/s10897-010-9344-7
39. Brennan ME, Robinson K, Brand A, Kirk J (2008) A multidisciplinary risk management clinic for women at high genetic risk of breast and ovarian cancer - Experience and evaluation. Breast 17(2):206–207. doi:10.1016/j.breast.2007.11.021
40. White VM, Young M-A, Farrelly A et al (2014) Randomized Controlled Trial of a Telephone-Based Peer-Support Program for Women Carrying a BRCA1 or BRCA2 Mutation: Impact on Psychological Distress. J Clin Oncol 32(36):4073–4285. doi:10.1200/jco.2013.54.1607
41. Iredale R, Mundy L, Hilgart J (2011) An online resource of digital stories about cancer genetics: qualitative study of patient preferences and information needs. J Med Internet Res 13(3): doi:10.2196/jmir.1735
42. Landsbergen KM, Brunner HG, Manders P, Hoogerbrugge N, Prins JB (2010) Educational-support groups for BRCA mutation carriers satisfy the need for information but do not affect emotional distress. Genet Couns 21(4):423–437