Can we test for hereditary cancer at 18 years when we start surveillance at 25? Patient reported outcomes

Familial Cancer

Volumn 12, Issue 4, 2013, Pages 675-682

  Sie, Aisha S ^a   Prins, Judith B ^a   Spruijt, Liesbeth ^a   Kets, C Marleen ^a   Hoogerbrugge, Nicoline ^a  

^a RADBOUD UNIVERSITY MEDICAL CENTER   (Netherlands)

Author keywords

BRCA; Cancer; Decision making; Hereditary; Lynch syndrome; Young adult

Indexed keywords

BRCA1 PROTEIN; BRCA2 PROTEIN;

ADULT; ARTICLE; BREAST CANCER; CANCER EPIDEMIOLOGY; CANCER RISK; CANCER SCREENING; COLON CANCER; CONFLICT; CONSULTATION; CONTROLLED STUDY; COPING BEHAVIOR; DECISION SUPPORT SYSTEM; DISEASE SEVERITY; DNA DETERMINATION; FAMILY HISTORY; FEMALE; GENETIC COUNSELING; GENETIC RISK; GENETIC SCREENING; HEREDITARY NONPOLYPOSIS COLORECTAL CANCER; HUMAN; MAJOR CLINICAL STUDY; MALE; MISMATCH REPAIR; MUTATIONAL ANALYSIS; PATIENT DECISION MAKING; PEDIGREE ANALYSIS; PRIORITY JOURNAL; QUALITY OF LIFE; QUESTIONNAIRE; RETROSPECTIVE STUDY; SELF REPORT;

ADOLESCENT; ADULT; DECISION MAKING; DNA REPAIR ENZYMES; FEMALE; FOLLOW-UP STUDIES; GENES, BRCA1; GENES, BRCA2; GENETIC COUNSELING; GENETIC PREDISPOSITION TO DISEASE; GENETIC TESTING; HETEROZYGOTE; HUMANS; MALE; MUTATION; NEOPLASTIC SYNDROMES, HEREDITARY; PROGNOSIS; QUALITY OF LIFE; RETROSPECTIVE STUDIES; SURVIVAL RATE; YOUNG ADULT;

EID: 84888205005     PISSN: 13899600     EISSN: 15737292     Source Type: Journal    
DOI: 10.1007/s10689-013-9644-9     Document Type: Article

References (34)

1. Trepanier A, Ahrens M, McKinnon W, Peters J, Stopfer J, Grumet SC, Manley S, Culver JO, Acton R, Larsen-Haidle J, Correia LA, Bennett R, Pettersen B, Ferlita TD, Costalas JW, Hunt K, Donlon S, Skrzynia C, Farrell C, Callif-Daley F, Vockley CW, National Society of Genetic C (2004) Genetic cancer risk assessment and counseling: recommendations of the national society of genetic counselors. J Genet Couns 13 (2):83-114. doi: 10.1023/B:JOGC.0000018821.48330.77
2. Comprehensive Cancer Centres the Netherlands (2010) Oncoline Guideline: Hereditary breast/ovarian cancer. http://www.oncoline.nl/hereditair-mamma- ovariumcarcinoom
3. Comprehensive Cancer Centres the Netherlands (2008) Oncoline Guideline: Hereditary colorectal cancer
4. Hamilton R, Williams JK, Bowers BJ, Calzone K (2009) Life trajectories, genetic testing, and risk reduction decisions in 18-39 year old women at risk for hereditary breast and ovarian cancer. J Genet Couns 18(2):147-159
5. Steinberg L (2005) Cognitive and affective development in adolescence. Trends Cogn Sci 9(2):69-74
6. Gazendam-Donofrio SM, Hoekstra HJ, van der Graaf WT, van de Wiel HB, Visser A, Huizinga GA, Hoekstra-Weebers JE (2007) Family functioning and adolescents' emotional and behavioral problems: when a parent has cancer. Ann Oncol 18(12):1951-1956
7. Huizinga GA, Visser A, van der Graaf WT, Hoekstra HJ, Stewart RE, Hoekstra-Weebers JE (2010) Family-oriented multilevel study on the psychological functioning of adolescent children having a mother with cancer. Psychooncology 20(7):730-737
8. Visser A, Huizinga GA, van der Graaf WT, Hoekstra HJ, Hoekstra-Weebers JE (2004) The impact of parental cancer on children and the family: a review of the literature. Cancer Treat Rev 30(8):683-694
9. van Oostrom I, Meijers-Heijboer H, Duivenvoorden HJ, Brocker-Vriends AH, van Asperen CJ, Sijmons RH, Seynaeve C, Van Gool AR, Klijn JG, Tibben A (2006) Experience of parental cancer in childhood is a risk factor for psychological distress during genetic cancer susceptibility testing. Ann Oncol 17(7):1090-1095
10. Andrews L, Mireskandari S, Jessen J, Thewes B, Solomon M, Macrae F, Meiser B (2006) Impact of familial adenomatous polyposis on young adults: attitudes toward genetic testing, support, and information needs. Genet Med 8(11):697-703. doi: 10.109701.gim.0000245574.75877.b9
11. Andrews L, Mireskandari S, Jessen J, Thewes B, Solomon M, Macrae F, Meiser B (2007) Impact of familial adenomatous polyposis on young adults: quality of life outcomes. Dis Colon Rectum 50(9):1306-1315. doi: 10.1007/s10350-007-0259-9
12. Johnson SB, Blum RW, Giedd JN (2009) Adolescent maturity and the brain: the promise and pitfalls of neuroscience research in adolescent health policy. J Adolesc Health 45(3):216-221
13. Steinberg L, Graham S, O'Brien L, Woolard J, Cauffman E, Banich M (2009) Age differences in future orientation and delay discounting. Child Dev 80(1):28-44
14. Byrnes JP (2002) The development of decision-making. J Adolesc Health 31(6 Suppl):208-215
15. Gaff CL, Lynch E, Spencer L (2006) Predictive testing of eighteen year olds: counseling challenges. J Genet Couns 15(4):245-251
16. Werner-Lin A, Hoskins LM, Doyle MH, Greene MH (2012) 'Cancer doesn't have an age': genetic testing and cancer risk management in BRCA1/2 mutation-positive women aged 18-24. Health (Lond). doi: 10.1177/1363459312442420
17. O'Connor AM (2010) User Manual - decisional conflict scale (16 item statement format). http://decisionaid.ohri.ca/docs/develop/User-Manuals/UM- Decisional-Conflict.pdf
18. O'Connor AM (1995) Validation of a decisional conflict scale. Med Decis Making 15(1):25-30
19. Sivell S, Elwyn G, Gaff CL, Clarke AJ, Iredale R, Shaw C, Dundon J, Thornton H, Edwards A (2008) How risk is perceived, constructed and interpreted by clients in clinical genetics, and the effects on decision making: systematic review. J Genet Couns 17(1):30-63. doi: 10.1007/s10897-007-9132-1
20. Wakefield CE, Homewood J, Mahmut M, Taylor A, Meiser B (2007) Usefulness of the Threatening Medical Situations Inventory in individuals considering genetic testing for cancer risk. Patient Educ Couns 69(1-3):29-38
21. Shiloh S, Koehly L, Jenkins J, Martin J, Hadley D (2008) Monitoring coping style moderates emotional reactions to genetic testing for hereditary nonpolyposis colorectal cancer: a longitudinal study. Psychooncology 17(8):746-755. doi: 10.1002/pon.1338
22. van Oostrom I, Meijers-Heijboer H, Duivenvoorden HJ, Brocker-Vriends AH, van Asperen CJ, Sijmons RH, Seynaeve C, Van Gool AR, Klijn JG, Tibben A (2007) Comparison of individuals opting for BRCA1/2 or HNPCC genetic susceptibility testing with regard to coping, illness perceptions, illness experiences, family system characteristics and hereditary cancer distress. Patient Educ Couns 65(1):58-68. doi: 10.1016/j.pec.2006.05.006
23. Koedoot N, Molenaar S, Oosterveld P, Bakker P, de Graeff A, Nooy M, Varekamp I, de Haes H (2001) The decisional conflict scale: further validation in two samples of Dutch oncology patients. Patient Educ Couns 45(3):187-193
24. Bottomley A, Aaronson NK (2007) International perspective on health-related quality-of-life research in cancer clinical trials: the European Organisation for Research and Treatment of Cancer experience. J Clin Oncol 25(32):5082-5086. doi: 10.1200/JCO.2007.11.3183
25. van Zuuren FJ, de Groot KI, Mulder NL, Muris P (1996) Coping with medical threat: an evaluation of the Threatening Medical Situations Inventory (TMSI). Pers Indiv Differ 21(1):21-31
26. Ong LM, Visser MR, van Zuuren FJ, Rietbroek RC, Lammes FB, de Haes JC (1999) Cancer patients' coping styles and doctor-patient communication. Psychooncology 8(2):155-166
27. Timmermans LM, van Zuuren FJ, van der Maazen RW, Leer JW, Kraaimaat FW (2007) Monitoring and blunting in palliative and curative radiotherapy consultations. Psychooncology 16(12):1111-1120
28. Cella D, Hughes C, Peterman A, Chang CH, Peshkin BN, Schwartz MD, Wenzel L, Lemke A, Marcus AC, Lerman C (2002) A brief assessment of concerns associated with genetic testing for cancer: the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire. Health Psychol 21(6):564-572
29. Pieterse A, van Dulmen S, Ausems M, Schoemaker A, Beemer F, Bensing J (2005) QUOTE-gene(ca): development of a counselee-centered instrument to measure needs and preferences in genetic counseling for hereditary cancer. Psychooncology 14(5):361-375. doi: 10.1002/pon.853
30. Salemink S, Dekker N, Kets CM, van der Looij E, van Zelst-Stams WA, Hoogerbrugge N (2012) Focusing on patient needs and preferences may improve genetic counseling for colorectal cancer. J Genet Couns. doi: 10.1007/s10897-012-9519-5
31. Trouillet R, Doan-Van-Hay LM, Launay M, Martin S (2011) Impact of age, and cognitive and coping resources on coping. Can J Aging 30(4):541-550. doi: 10.1017/S0714980811000456
32. Ozanne EM, O'Connell A, Bouzan C, Bosinoff P, Rourke T, Dowd D, Drohan B, Millham F, Griffin P, Halpern EF, Semine A, Hughes KS (2012) Bias in the Reporting of Family History: implications for Clinical Care. J Genet Couns. doi: 10.1007/s10897-011-9470-x
33. Galea S, Tracy M (2007) Participation rates in epidemiologic studies. Ann Epidemiol 17(9):643-653. doi: 10.1016/j.annepidem.2007.03.013
34. Redelmeier DA, Dickinson VM (2011) Determining whether a patient is feeling better: pitfalls from the science of human perception. J Gen Intern Med 26(8):900-906. doi: 10.1007/s11606-011-1655-3