Preparing individuals to communicate genetic test results to their relatives: Report of a randomized control trial

Familial Cancer

Volumn 12, Issue 3, 2013, Pages 537-546

  Montgomery, Susan V ^a   Barsevick, Andrea M ^d   Egleston, Brian L ^a   Bingler, Ruth ^a   Ruth, Karen ^a   Miller, Suzanne M ^a   Malick, John ^b   Cescon, Terrence P ^c   Daly, Mary B ^a  

^a FOX CHASE CANCER CENTER   (United States)

^b American Infrastructure   (United States)

^c READING HOSPITAL AND MEDICAL CENTER   (United States)

^d THOMAS JEFFERSON UNIVERSITY   (United States)

Author keywords

BRCA1 2; Family communication; Genetic testing; Social pressure; Theory of planned behavior

Indexed keywords

BRCA1 PROTEIN; BRCA2 PROTEIN;

ADULT; ARTICLE; COMMUNICATION SKILL; CONTROLLED STUDY; FEMALE; FIRST DEGREE RELATIVE; GENETIC SCREENING; HUMAN; INTERPERSONAL COMMUNICATION; MAJOR CLINICAL STUDY; OUTCOME ASSESSMENT; PERCEPTION; PRIORITY JOURNAL; RANDOMIZED CONTROLLED TRIAL (TOPIC); SEX DIFFERENCE; SOCIAL PSYCHOLOGY; THEORY OF PLANNED BEHAVIOR;

BRCA1 PROTEIN; BRCA2 PROTEIN; BREAST NEOPLASMS; CASE-CONTROL STUDIES; COMMUNICATION; DISCLOSURE; FAMILY; FEMALE; FOLLOW-UP STUDIES; GENETIC COUNSELING; GENETIC PREDISPOSITION TO DISEASE; GENETIC TESTING; HUMANS; INTERVENTION STUDIES; MALE; MIDDLE AGED; MUTATION; OVARIAN NEOPLASMS; PROGNOSIS; QUESTIONNAIRES;

EID: 84885956359     PISSN: 13899600     EISSN: 15737292     Source Type: Journal    
DOI: 10.1007/s10689-013-9609-z     Document Type: Article

References (44)

1. American Society of Clinical Oncology (2003) Policy statement update: genetic testing for cancer susceptibility. J Clin Oncol 21:2397-2406
2. Patenaude AF, Dorval M, DiGianni LS, Schneider KA, Chittenden A, Garber JE (2006) Sharing BRCA1/2 test results with first-degree relatives: factors predicting who women tell. J Clin Oncol 24:700-706
3. Wilson BJ, Forrest K, van Teijlingen ER et al (2004) Family communication about genetic risk: the little that is known. Community Genet 7:15-24
4. McKinnon W, Naud S, Ashikaga T, Colletti R, Wood M (2007) Results of an intervention for individuals and families with BRCA mutations: a model for providing medical updates and psychosocial support following genetic testing. J Genet Couns 16:433-456
5. Smith KR, West JA, Croyle RT, Botkin JR (1999) Familial context of genetic testing for cancer susceptibility: moderating effect of siblings' test results on psychological distress one to two weeks after BRCA1 mutation testing. Cancer Epidemiol Biomarkers Prev 8:385-392
6. Green J, Richards M, Murton F, Statham H, Hallowell N (1997) Family communication and genetic counseling: the case of hereditary breast and ovarian cancer. J Genet Couns 6:45-60
7. Landsbergen K, Verhaak C, Kraaimaat F, Hoogerbrugge N (2005) Genetic uptake in BRCA-mutation families is related to emotional and behavioral communication characteristics of index patients. Fam Cancer 4:115-119
8. Hughes C, Lerman C, Schwartz M et al (2002) All in the family: evaluation of the process and content of sisters' communication about BRCA1 and BRCA2 genetic test results. Am J Med Genet 107:143-150
9. Julian-Reynier C, Eisinger F, Chabal F et al (2000) Disclosure to the family of breast/ovarian cancer genetic test results: patient's willingness and associated factors. Am J Med Genet 94:13-18
10. Tercyak KP, Lerman C, Peshkin BN et al (2001) Effects of coping style and BRCA1 and BRCA2 test results on anxiety among women participating in genetic counseling and testing for breast and ovarian cancer risk. Health Psychol 20:217-222
11. Kodl MM, Lee JW, Matthews AK, Cummings SA, Olopade OI (2006) Correlates of depressive symptoms among women seeking cancer genetic counseling and risk assessment at a high-risk cancer clinic. J Genet Couns 15:267-276
12. Koehly LM, Peterson SK, Watts BG, Kempf KK, Vernon SW, Gritz ER (2003) A social network analysis of communication about hereditary nonpolyposis colorectal cancer genetic testing and family functioning. Cancer Epidemiol Biomarkers Prev 12:304-313
13. Peterson SK (2005) The role of the family in genetic testing: theoretical perspectives, current knowledge, and future directions. Health Educ Behav 32:627-639
14. MacDonald DJ, Sarna L, Uman GC, Grant M, Weitzel JN (2006) Cancer screening and risk-reducing behaviors of women seeking genetic cancer risk assessment for breast and ovarian cancers. Oncol Nurs Forum 33:E27-E35
15. Barsevick AM, Montgomery SV, Ruth K et al (2008) Intention to communicate BRCA1/BRCA2 genetic test results to the family. J Fam Psychol 22:303-312
16. Buckman R (1992) How to break bad news, a guide for health care professionals. The John Hopkins University Press, Baltimore
17. Daly MB, Barsevick A, Miller SM et al (2001) Communicating genetic test results to the family: a six-step, skills-building strategy. Fam Community Health 24:13-26
18. Ajzen A, Fishbein M (1980) Understanding attitudes and predicting social behavior. Prentice-Hall, Englewood Cliffs
19. Ajzen I (2002) Perceived behavioral control, self-efficacy, focus of control, and the theory of planned behavior. J Appl Soc Psychol 32:665-683
20. Lierman LM, Young HM, Kasprzyk D, Benoliel JQ (1990) Predicting breast self-examination using the theory of reasoned action. Nurs Res 39:97-101
21. Park HS, Smith SW (2007) Distinctiveness and influence of subjective norms, personal descriptive and injunctive norms, and societal descriptive and injunctive norms on behavioral intent: a case of two behaviors critical to organ donation. Hum Commun Res 33:194-218
22. Weiss D, Marmar C (1997) Assessing psychological trauma and PTSD - the impact of event scale-revised. Guildford, New York
23. Miller SM (1987) Monitoring and blunting: validation of a questionnaire to assess styles of information seeking under threat. J Pers Soc Psychol 52:345-353
24. Eaton W, Smith C, Ybarra M, Muntaner C, Tien A (2004) The use of psychological testing for treatment planning and outcomes assessment, III edn. Lawrence Erlbaum Associates, Inc., Mahwah
25. Finlay E, Stopfer JE, Burlingame E et al (2008) Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genet Test 12:81-91
26. McGivern B, Everett J, Yager GG, Baumiller RC, Hafertepen A, Saal HM (2004) Family communication about positive BRCA1 and BRCA2 genetic test results. Genet Med 6:503-509
27. Roshanai AH, Rosenquist R, Lampic C, Nordin K (2009) Does enhanced information at cancer genetic counseling improve counselees' knowledge, risk percetion, satisfaction and negotiation of information to at-risk relatives? Acta Oncol 48:999-1009
28. Forrest LE, Curnow L, Delatycki MB, Skene L, Aitken MA (2008) Health first, genetics second: exploring families' experiences of communicating genetic information. Eur J Hum Genet 16:1329-1335
29. Nycum G, Avard D, Knoppers BM (2009) Factors influencing intrafamilial communication of hereditary breast and ovarian cancer genetic information. Eur J Hum Genet 17(7):872-880
30. Afifi WA, Morgan SE, Stephenson MT et al (2006) Examining the decision to talk with family about organ donation: applying theory of motivated information management. Commun Monogr 73:188-215
31. Jennings-Dozier K (1999) Predicting intentions to obtain a pap smear among African American and Latina women: testing the theory of planned behavior. Nurs Res 48:198-205
32. Jemmott LS, Jemmott JB III (1991) Applying the theory of reasoned action to AIDS risk behavior: condom use among black women. Nurs Res 40:228-234
33. Nordin K, Bjork J, Berglund G (2004) Factors influencing intention to obtain a genetic test for a hereditary disease in an affected group and in the general public. Prev Med 39:1107-1114
34. Johnston DW, Johnston M, Pollard B, Kinmonth AL, Mant D (2004) Motivation is not enough: prediction of risk behavior following diagnosis of coronary heart disease from the theory of planned behavior. Health Psychol 23:533-538
35. Tolma EL, Reininger BM, Ureda J, Evans A (2003) Cognitive motivations associated with screening mammography in Cyprus. Prev Med 36:363-373
36. Sheeran P, Conner M, Norman P (2001) Can the theory of planned behavior explain patterns of health behavior change? Health Psychol 20:12-19
37. Armitage CJ, Norman P, Conner M (2002) Can the theory of planned behaviour mediate the effects of age, gender and multidimensional health locus of control? Br J Health Psychol 7:299-316
38. Fishbein M, Ajzen I (2005) Theory-based behavior change interventions: comments on Hobbis and Sutton. J Health Psychol 10:27-31; discussion 7-43
39. Kuwabara SA, Van Voorhees BW, Gollan JK, Alexander GC (2007) A qualitative exploration of depression in emerging adulthood: disorder, development, and social context. Gen Hosp Psychiatry 29:317-324
40. Smith M, Calam R, Bolton C (2009) Psychological factors linked to self-reported depression symptoms in late adolescence. Behav Cogn Psychother 37:73-85
41. Daly MB (2009) The impact of social roles on the experience of men in BRCA1/2 families: implications for counseling. J Genet Couns 18:42-48
42. Cheung EL, Olson AD, Yu TM, Han PZ, Beattie MS (2010) Communication of BRCA results and family testing in 1,103 high-risk women. Cancer Epidemiol Biomarkers Prev 19(9):2211-2219
43. Finlay E, Stopfer JE, Burlingame E (2008) Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genet Test 12(1):91-92
44. Vos J, Jansen AM, Menko F, van Asperen CJ, Stiggelbout AM, Tibben A (2011) Family communication matters: the impact of telling relatives about unclassified variants and uninformative DNA-test results. Genet Med 13(4):333-341