Development of the Informing Relatives Inventory (IRI): Assessing Index Patients’ Knowledge, Motivation and Self-Efficacy Regarding the Disclosure of Hereditary Cancer Risk Information to Relatives

International Journal of Behavioral Medicine

Volumn 22, Issue 4, 2015, Pages 551-560

  de Geus, Eveline ^a   Aalfs, Cora M ^a   Menko, Fred H ^b   Sijmons, Rolf H ^c   Verdam, Mathilde G E ^a   de Haes, Hanneke C J M ^a   Smets, Ellen M A ^a  

^a UNIVERSITY OF AMSTERDAM   (Netherlands)

^b VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^c UNIVERSITY MEDICAL CENTER GRONINGEN   (Netherlands)

Author keywords

Family communication; Genetic counseling; Hereditary cancer; Psychometrics

Indexed keywords

ADOLESCENT; ADULT; AGED; ATTITUDE TO HEALTH; FEMALE; GENETICS; HUMAN; INTERPERSONAL COMMUNICATION; MALE; MIDDLE AGED; MOTIVATION; NEOPLASM; PSYCHOMETRY; REPRODUCIBILITY; RISK; SELF CONCEPT; VERY ELDERLY; YOUNG ADULT;

ADOLESCENT; ADULT; AGED; AGED, 80 AND OVER; FEMALE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; MALE; MIDDLE AGED; MOTIVATION; NEOPLASMS; PSYCHOMETRICS; REPRODUCIBILITY OF RESULTS; RISK; SELF EFFICACY; TRUTH DISCLOSURE; YOUNG ADULT;

EID: 84939185918     PISSN: 10705503     EISSN: None     Source Type: Journal    
DOI: 10.1007/s12529-014-9455-x     Document Type: Article

References (43)

1. Godard B, Hurlimann T, Letendre M, Egalite N. Guidelines for disclosing genetic information to family members: from development to use. Fam Cancer. 2006;5:103–16.
2. Stichting Opsporing Erfelijke Tumoren, Vereniging Klinische Genetica Nederland. Erfelijke tumoren, richtlijnen voor diagnostiek en preventie 2010. 2010.
3. Vink GR, van Asperen CJ, Devilee P, Breuning MH, Bakker E. Unclassified variants in disease-causing genes: nonuniformity of genetic testing and counselling, a proposal for guidelines. Eur J Hum Genet. 2005;13:525–7.
4. Dancyger C, Wiseman M, Jacobs C, Smith JA, Wallace M, Michie S. Communicating BRCA1/2 genetic test results within the family: a qualitative analysis. Psychol Health. 2011;26:1018–35. doi:10.1080/08870446.2010.525640.
5. Hughes C, Lerman C, Schwartz M, et al. All in the family: evaluation of the process and content of sisters’ communication about BRCA1 and BRCA2 genetic test results. Am J Med Genet. 2002;107:143–50.
6. McGivern B, Everett J, Yager GG, Baumiller RC, Hafertepen A, Saal HM. Family communication about positive BRCA1 and BRCA2 genetic test results. Genet Med. 2004;6:503–9.
7. Wiseman M, Dancyger C, Michie S. Communicating genetic risk information within families: a review. Fam Cancer. 2010;9:691–703. doi:10.1007/s10689-010-9380-3.
8. Falk MJ, Dugan RB, O’Riordan MA, Matthews AL, Robin NH. Medical geneticist’ duty to warn at-risk relatives for genetic disease. Am J Med Genet. 2003;120A:374–80.
9. Dugan RB, Wiesner GL, Juengst ET, O’Riordan MA, Matthews AL, Robin NH. Duty to warn at-risk relatives for genetic disease. Am J Med Genet. 2003;119C:27–34.
10. Peterson SK, Watts BG, Koehly LM, et al. How families communicate about HNPCC genetic testing: findings from a qualitative study. Am J Med Genet. 2003;119C:78–86.
11. Claes E, Evers-Kiebooms G, Boogaerts A, Decruyenaere M, Denayer L, Legius E. Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. Am J Med Genet A. 2003;116:11–9.
12. MacDonald DJ, Sarna L, van Servellen G, Bastani R, Giger JN, Weitzel JN. Selection of family members for communication of cancer risk and barriers to this communication before and after genetic cancer risk assessment. Genet Med. 2007;9:275–82.
13. Wilson BJ, Forrest K, van Teijlingen ER, McKee L, Haites N, Matthews E. Family communication about genetic risk: the little that is known. Community Genet. 2004;7:24.
14. Suthers GK, Armstrong J, McCormack J, Trott D. Letting the family know: balancing ethics and effectiveness when notifying relatives about genetic testing for a familial disorder. J Med Genet. 2006;43:665–70.
15. Chivers SK, Addington-Hall J, Lucassen AM, Foster CL. What facilitates or impedes family communication following genetic testing for cancer risk? A systematic review and meta-synthesis of primary qualitative research. J Genet Couns. 2010;19:330–42.
16. Dancyger C, Smith JA, Jacobs C, Wallace M, Michie S. Comparing family members’ motivations and attitudes towards genetic testing for hereditary breast and ovarian cancer: a qualitative analysis. Eur J Hum Genet. 2010;18:1289–95. doi:10.1038/ejhg.2010.114.
17. McCann S, MacAuley D, Barnett Y, et al. Family communication, genetic predisposition, genetic testing and colonoscopy screening in hereditary non-polyposis colon cancer: a qualitative study. Psycho-Oncology. 2009;18:1208–15.
18. van den Nieuwenhoff HWP, Mesters I, Gielen C, de Vries NK. Family communication regarding inherited high cholesterol: why and how do patients disclose genetic risk? Soc Sci Med. 2007;65:1025–37.
19. Mesters I, Ausems M, Eichhorn S, Vasen H. Informing one’s family about genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a retrospective exploratory study. Fam Cancer. 2005;4:163–7.
20. van Dussen L. Colon cancer screening in HNPCC families; evaluation of the uptake of DNA-testing and genetic counseling within HNPCC families, problems relating to disclosure and views on alternative ways of disclosing information. Werkstuk Geneeskunde. 2006.
21. Croyle RT, Lerman C. Risk communication in genetic testing for cancer susceptibility. J Natl Cancer Inst Monogr. 1999;59–66.
22. McAllister M. Personal theories of inheritance, coping strategies, risk perception and engagement in hereditary non-polyposis colon cancer families offered genetic testing. Clin Genet. 2003;64:179–89.
23. Vos J, Menko F, Jansen AM, van Asperen CJ, Stiggelbout AM, Tibben A. A whisper-game perspective on the family communication of DNA-test results: a retrospective study on the communication process of BRCA1/2-test results between proband and relatives. Fam Cancer. 2011;10:87–96.
24. Ponz de Leon M, Benatti P, DiGeorgio C, Losi L, Genuardi M. Genetic testing among high-risk individuals in families with hereditary nonpolyposis colorectal cancer. Br J Cancer. 2004;90:882–7.
25. Pieterse AH, Ausems MG, van Dulmen AM, Beemer FA, Bensing JM. Initial cancer genetic counseling consultation: change in counselees’ cognitions and anxiety, and association with addressing their needs and preferences. Am J Med Genet A. 2005;137:27–35.
26. Erblich J, Brown K, Kim Y, Valdimarsdottir HB, Livingston BE, Bovbjerg DH. Development and validation of a Breast Cancer Genetic Counseling Knowledge Questionnaire. Patient Educ Couns. 2005;56:182–91. doi:10.1016/j.pec.2004.02.007.
27. Mellon S, Janisse J, Gold R, et al. Predictors of decision making in families at risk for inherited breast/ovarian cancer. Health Psychol. 2009;28:38–47. doi:10.1037/a0012714.
28. Finlay E, Stopfer JE, Burlingame E, et al. Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations. Genet Test. 2008;12:81–91.
29. Bjorvatn C, Eide GE, Hanestad BR, Hamang A, Havik OE. Intrusion and avoidance in subjects undergoing genetic investigation and counseling for hereditary cancer. Support Care Cancer. 2009;17:1371–81. doi:10.1007/s00520-009-0594-6.
30. Scholz U, Dona BG, Sud S, Schwarzer R. Is general self-efficacy a universal construct? Psychometric findings from 25 countries. Eur J Psychol Assess. 2002;18:242–51.
31. Richtlijn VKGN. Het informeren van familieleden bij erfelijke aanleg voor familieleden. 2012.
32. Bandura A. Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev. 1977;84:191–215.
33. Wolf MS, Chang CH, Davis T, Makoul G. Development and validation of the Communication and Attitudinal Self-Efficacy scale for cancer (CASE-cancer). Patient Educ Couns. 2005;57:333–41.
34. Bjorvatn C, Eide GE, Hanestad BR, Havik OE. Anxiety and depression among subjects attending genetic counseling for hereditary cancer. Patient Educ Couns. 2008;71:234–43. doi:10.1016/j.pec.2008.01.008.
35. Teeuw B, Schwarzer R, Jerusalem M. Dutch adaptation of the general self-efficacy scale. 1994.
36. Smith-McLallen A, Fishbein M. Predictors of intentions to perform six cancer-related behaviours: roles for injunctive and descriptive norms. Psychol Health Med. 2008;13:389–401.
37. Squires JE, Hayduk L, Hutchinson AM, et al. A protocol for advanced psychometric assessment of surveys. Nurs Res Pract. 2012;2013:156782.
38. Browne MW. Alternative ways of assessing model fit. In: Bollen KA, Long JS, editors. Testing structural equation models. Beverly Hills: Sage; 1993. p. 136–62.
39. Clark LA, Watson D. Constructing validity: basic issues in objective scale development. Psychol Assess. 1995;7:309–19.
40. Field AP. Discovering statistics using SPSS. SAGE, 2009.
41. Gaff CL, Clarke AJ, Atkinson P, et al. Process and outcome in communication of genetic information within families: a systematic review. Eur J Hum Genet. 2007;15:999–1011.
42. Cheung EL, Olson AD, Yu TM, Han PZ, Beattie MS. Communication of BRCA results and family testing in 1,103 high-risk women. Cancer Epidemiol Biomarkers Prev. 2010;19:2211–9. doi:10.1158/1055-9965.EPI-10-0325.
43. Albada A, van Dulmen S, Bensing JM, Ausems MG. Effects of a pre-visit educational website on information recall and needs fulfillment in breast cancer genetic counselling, a randomized controlled trial. Breast Cancer Res. 2012;14:R37.