Understanding of BRCA1/2 genetic tests results: The importance of objective and subjective numeracy

Psycho-Oncology

Volumn 23, Issue 10, 2014, Pages 1142-1148

  Hanoch, Yaniv ^a   Miron Shatz, Talya ^b   Rolison, Jonathan J ^c   Ozanne, Elissa ^d  

^a UNIVERSITY OF PLYMOUTH   (United Kingdom)

^b ONO ACADEMIC COLLEGE   (Israel)

^c QUEEN'S UNIVERSITY BELFAST   (United Kingdom)

^d DARTMOUTH INSTITUTE FOR HEALTH POLICY AND CLINICAL PRACTICE   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

BRCA1 PROTEIN; BRCA2 PROTEIN;

ADULT; ARTICLE; BREAST CANCER; CANCER RISK; CANCER SCREENING; COMPREHENSION; DISEASE ASSOCIATION; FALSE NEGATIVE RESULT; FALSE POSITIVE RESULT; FEMALE; GENE MUTATION; GENETIC SCREENING; HIGH RISK POPULATION; HUMAN; MATHEMATICAL PHENOMENA; NAMED INVENTORIES, QUESTIONNAIRES AND RATING SCALES; OBJECTIVE NUMERACY SCALE; OVARY CANCER; PATIENT ATTITUDE; PATIENT EDUCATION; RISK ASSESSMENT; SUBJECTIVE NUMERACY SCALE; ATTITUDE TO HEALTH; BREAST NEOPLASMS; GENETIC COUNSELING; GENETIC PREDISPOSITION; GENETICS; HEALTH SURVEY; INTERNET; MENTAL STRESS; MIDDLE AGED; MUTATION; PERCEPTION; PSYCHOLOGY; REGRESSION ANALYSIS; SOCIOECONOMICS; TUMOR SUPPRESSOR GENE; UNCERTAINTY;

ADULT; ATTITUDE TO HEALTH; BREAST NEOPLASMS; FEMALE; GENES, BRCA1; GENES, BRCA2; GENETIC COUNSELING; GENETIC PREDISPOSITION TO DISEASE; GENETIC TESTING; HEALTH SURVEYS; HUMANS; INTERNET; MIDDLE AGED; MUTATION; PERCEPTION; REGRESSION ANALYSIS; RISK ASSESSMENT; SOCIOECONOMIC FACTORS; STRESS, PSYCHOLOGICAL; UNCERTAINTY;

EID: 84907930370     PISSN: 10579249     EISSN: 10991611     Source Type: Journal    
DOI: 10.1002/pon.3537     Document Type: Article

References (37)

1. Vos J, Gomez-Garcia EB, Oosterwijk JC, et al. Opening the psychological black box in genetic counseling. The psychological impact of DNA-testing is predicted by the counsellees' perception, the medical impact by the pathogenic or uninformative BRCA1/2-result. Psycho-Oncology 2012;21:29-42.
2. O'Neill SC, Rini C, Goldsmith RE, et al. Distress among women receiving uninformative BRCA1/2 results: 12-month outcomes. Psyco-Oncology 2009;18:1088-1096.
3. van Asperen CJ, van Dijk S, Zoeteweij MW, et al. What do women really want to know? Motives for attending familial breast cancer clinics. J Med Gen 2002;39:410-414.
4. Cypowyj C, Eisinger F, Huiart L, et al. Subjective interpretation of inconclusive BRCA1/2 cancer genetic test results and transmission of information to the relatives. Psycho-Oncology 2009:18, 209-215.
5. Dorval M, Gauthier G, Maunsell E, et al. No evidence of false reassurance among women with an inconclusive BRCA1/2 genetic test result. Can Epidol and Biomarkers Prev 2005;14:2862-2867.
6. Ardern-Jones A, Kenen R, Lynch E, et al. Is no news good news? Inconclusive genetic test results in BRCA1 and BRCA2 from patients and professionals' perspectives. Hered Can Clinical Prac 2010;8:1-8.
7. Hallowell N, Foster C, Ardern-Jones A, et al. Genetic testing for women previously diagnosed with breast/ovarian cancer: examining the impact of BRCA1 and BRCA2 mutation searching. Genet Test 2002;6:79-87.
8. Maheu C, Thorne S. Receiving inconclusive genetic test results: an interpretive description of the BRCA1/2 experience. Res Nurs Heal 2008;31:553-562.
9. van Dijk S, Otten W, Tollenaar RA, et al. Putting it all behind: long-term psychological impact of an inconclusive DNA test result for breast cancer. Genet Medic 2008;10:745-750.
10. van Dijk S, Timmermans DR, Meijers-Heijboer H, et al. Clinical characteristics affect the impact of an uninformative DNA test result: the course of worry and distress experienced by women who apply for genetic testing for breast cancer. J Clinic Oncolog 2006;4:3672-3677.
11. Hanoch Y, Miron-Shatz T, Himmelstein M. Genetic testing and risk interpretation: how do women understand lifetime risk results? Judgm Decis Mak 2010;5:116-123.
12. Vos J, Otten W, van Asperen C, et al. The counselees' view of an unclassified variant in BRCA1/2: recall, interpretation, and impact on life. Psyco-Oncology 2008;17:822-830.
13. Klein WMP, Stefanek ME. Cancer risk elicitation and communication: lessons from the psychology of risk perception. CA Cancer J Clin 2007;57:147-167.
14. Sivell S, Elwyn G, Gaff CL, et al. How risk is perceived, constructed and interpreted by clients in clinical genetics, and the effects on decision making: systematic review. J Genet Counsel 2008;17:30-63.
15. Vos J, Stiggelbout AM, Oosterwijk J, et al. A counselee-oriented perspective on risk communication in genetic counselling: explaining the inaccuracy of the counselees' risk perception shortly after BRCA1/2 test results disclosure. Genetic Medicine 2011;13:800-811.
16. Schwartz LM, Woloshin S, Black WC, Welch HG. The role of numeracy in understanding the benefit of screening mammography. Ann Inter Med 1997;127:966-972.
17. Gigerenzer G, Gaissmaier W, Kurz-Milcke E, Schwartz LM, Woloshin S. Helping doctors and patients make sense of health statistics. Psycho Sci Pub Inter 2007;8:53-96.
18. Reyna VF, Nelson WL, Han PK, Dieckmann NF. How numeracy influences risk comprehension and medical decision making. Psychol Bull 2009;135:943-973.
19. Rolison JJ, Hanoch Y, Miron-Shatz T. What do men understand about lifetime risk following genetic testing? The effect of context and numeracy. Health Psychol 2012;3:530-533.
20. Wood S, Hanoch Y, Barnes A, Cummings J, Rice T. Choosing the right Medicare drug plan: the effects of age, choice size, and numeracy. Psycho Aging 2011;26:295-307.
21. Rudd RE, Colton T, Schacht R. An Overview of Medical and Public Health Literature Addressing Literacy Issues: An Annotated Bibliography (NCSALL Report No. 14). National Center for the Study of Adult Learning and Literacy: Cambridge, MA, 2000.
22. Baker DW, Parker RM, Williams MV, Clark WS. Health literacy and the risk of hospital admission. J Gene Inter Med 1998;13:791-798.
23. Baker DW, Parker RM, Williams MV, Clark WS, Nurss J. The relationship of patient reading ability to self-reported health and use of health services. Amer J Pub Heal 1997;87:1027-1030.
24. Gazmararian JA, Williams MV, Peel J, Baker DW. Health literacy and knowledge of chronic disease. Pat Educ Couns 2003;51:267-275.
25. Schillinger D, Grumbach K, Piette J, et al. Association of health literacy with diabetes outcomes. JAMA 2002;288:475-482.
26. Wolf MS, Gazmararian JA, Baker DW. Health literacy and functional health status among older adults. Arch Inter Med 2005;165:1946-1952.
27. Ziogas A, Horick NK, Kinney AY, et al. Clinically relevant changes in family history of cancer over time. 2011 JAMA;13:172-178
28. Lipkus M, Samsa G, Rimer BK. General performance on a numeracy scale among highly educated samples. Med Decis Mak 2001;21:37-44.
29. Galesic M, Garcia-Retamero R. Do low-numeracy people avoid shared decision making? Health Psychol 2011;30:336-341.
30. Fagerlin A, Zikmund-Fisher BJ, Ubel PA, Jankovic A, Derry HA, Smith DM. Measuring numeracy without a math test: development of the Subjective Numeracy Scale. Med Decis Mak 2007;7:672-680.
31. Zikmund-Fisher BJ, Smith DM, Ubel PA, Fagerlin A. Validation of the Subjective Numeracy Scale: effects of low numeracy on comprehension of risk communications and utility elicitations. Med Decis Mak 2007;27:663-671.
32. Rolison JJ, Wood S, Hanoch Y, Liu PJ. Subjective Numeracy Scale as a tool for assessing statistical numeracy in older adult populations. Gerontology 2013;59:283-288.
33. Murray ML, Cerrato F, Bennett RL, Jarvik GP. Follow-up of carriers of BRCA1 and BRCA2 variants of unknown significance: variant reclassification and surgical decisions. Genetic Medicine 2011;13:998-1005.
34. Vos J, Menko FH, Oosterwijk JC, van Asperen CJ, Stiggelbout AM, Tibben A. Genetic counseling does not fulfill the counselees' need for certainty in hereditary breast/ovarian cancer families: an explorative assessment. Psycho-Oncology 2013;22:1167-1176.
35. O'Neill SC, DeMarco T, Peshkin BN, et al. Tolerance for uncertainty and perceived risk among women receiving uninformative BRCA1/2 test results. Am J Med Gen C Sem Med Gen 2006;142C:251-259
36. Culver J, Brinkerhoff C, Clague J, Yang K, Singh KE, Sand SR, Weitzel JN. Variants of uncertain significance in BRCA testing: evaluation of surgical decisions, risk perception, and cancer distress. Clin Genet 2013;84(5):464-472. doi:10.1111/cge.12097.
37. Vos J, van Asperen CJ, Wijnen JT, Stiggelbout AM, Tibben A. Disentangling the Babylonian speech confusion in genetic counseling: an analysis of the reliability and validity of the nomenclature for BRCA1/2 DNA-test results other than pathogenic. Gen Medic 2009;11:742-749.