Journal of Genetic Counseling

, Volume 16, Issue 6, pp 693–712 | Cite as

Assessment of Psychosocial Outcomes in Genetic Counseling Research: An Overview of Available Measurement Scales

  • Nadine A. Kasparian
  • Claire E. Wakefield
  • Bettina Meiser
Professional Issues

Abstract

The aim of the present paper was to describe and evaluate many of the measurement scales currently used in genetic counseling outcomes research. A team of three researchers reviewed the available literature and selected a variety of validated instruments suitable for measurement of genetic counseling outcomes. There are numerous scales to assess each of the following outcomes among counselees: satisfaction with genetic counseling; knowledge; decision-making; psychological adjustment; coping; perceived personal control; perceptions of disease risk; and family communication about genetic risk. However, the strengths and limitations inherent to each instrument warrant careful consideration prior to implementation. In the genetic counseling context, scale selection should be undertaken with thought directed towards the characteristics of the research sample (e.g. levels of literacy, culture, medical condition), the practicalities of the research setting (e.g. available funding and resources, time restrictions, researcher expertise), the purpose of the research (i.e. the specific aspect of the genetic counseling experience to be studied), and the science underlying the scale (e.g. theoretical framework, psychometric properties).

Keywords

Genetic counseling Psychological outcomes Client satisfaction Decision-making Distress Perceived risk Family communication 

Notes

Acknowledgements

We gratefully acknowledge Dr. Clara Gaff, for her valuable input into the development of this manuscript. We are also grateful to Dr. Alison Rutstein, for administrative support. Nadine Kasparian is supported by a Program Grant for Excellence in Translational Research from the Cancer Institute NSW. Claire Wakefield is supported by a Cancer Council of NSW Strategic Research Partnership (STREP) Grant (ID SRP 06-X5). Bettina Meiser is supported by a Career Development Award from The National Health and Medical Research Council of Australia (ID 350989).

References

  1. Armeli, C., Robbins, S., & Eunpu, D. (2005). Comparing knowledge of β-thalassemia in samples of Italians, Italian-Americans, and non-Italian-Americans. Journal of Genetic Counseling, 14(5), 365–376.PubMedGoogle Scholar
  2. Armstrong, D., Michie, S., & Marteau, T. (1998). Revealed identity: A study of the process of genetic counseling. Social Science & Medicine, 47, 1653–1658.Google Scholar
  3. Aspinwall, L. G., & Taylor, S. E. (1992). Modeling cognitive adaptation: A longitudinal investigation of the impact of individual differences and coping on college adjustment and performance. Journal of Personality and Social Psychology, 63(6), 989–1003.PubMedGoogle Scholar
  4. Averill, J. (1973). Personal control over aversive stimuli and its relationship to stress. Psychological Bulletin, 80(4), 286–303.Google Scholar
  5. Beavers, W., Hampson, R., & Hulgus, Y. (1985). The Beavers approach to family assessment. Family Process, 24, 398–405.Google Scholar
  6. Ben-Zira, Z. (1976). The function of professionals’ affective behavior in client satisfaction: A revised approach to social interaction theory. Journal of Health and Social Behavior, 17, 3–11.Google Scholar
  7. Berkenstadt, M., Shiloh, S., Barkai, G., Katznelson, M. B., & Goldman, B. (1999). Perceived personal control (PPC): A new concept in measuring outcome of genetic counseling. American Journal of Medical Genetics, 82(1), 53–59.PubMedGoogle Scholar
  8. Biesecker, B. B. (2001). Goals of genetic counseling. Clinical Genetics, 60, 323–330.PubMedGoogle Scholar
  9. Biesecker, B. B., Ishibe, N., Hadley, D. W., Giambarresi, T. R., Kase, R. G., Lerman, C., et al. (2000). Psychosocial factors predicting BRCA1/BRCA2 testing decisions in members of hereditary breast and ovarian cancer families. American Journal of Medical Genetics, 93(4), 257–263.PubMedGoogle Scholar
  10. Biesecker, B. B., & Peters, K. F. (2001). Process studies in genetic counseling: Peering into the black box. American Journal of Medical Genetics, 106(3), 191–198.PubMedGoogle Scholar
  11. Bjelland, I., Dahl, A., Haug, T., & Neckelmann, D. (2002). The validity of the Hospital Anxiety and Depression Scale: An updated literature review. Journal of Psychosomatic Research, 52(2), 69–77.PubMedGoogle Scholar
  12. Bjorvatn, C., Eide, G., Hanestad, B., Oyen, N., Havik, O., Carlsson, A., et al. (2007). Risk perception, worry and satisfaction related to genetic counseling for hereditary cancer. Journal of Genetic Counseling, 16(2), 211–222.PubMedGoogle Scholar
  13. Blandy, C., Chabal, F., Stoppa-Lyonnet, D., & Julian-Reynier, C. (2003). Testing participation in BRCA1/2-positive families: Initiator role of index cases. Genet Test, 7(3), 225–233.PubMedGoogle Scholar
  14. Bowen, D. J., Bourcier, E., Press, N., Lewis, F. M., & Burke, W. (2004). Effects of individual and family functioning on interest in genetic testing. Community Genetics, 7(1), 25–32.PubMedGoogle Scholar
  15. Brain, K., Gray, J., Norman, P., France, E., Anglim, C., Barton, G., et al. (2000). Randomized trial of a specialist genetic assessment service for familial breast cancer.[see comment]. Journal of the National Cancer Institute, 92(16), 1345–1351.PubMedGoogle Scholar
  16. Brain, K., Norman, P., Gray, J., Rogers, C., Mansel, R., & Harper, P. (2002). A randomized trial of specialist genetic assessment: Psychological impact on women at different levels of familial breast cancer risk. British Journal of Cancer, 86, 233–238.PubMedGoogle Scholar
  17. Brehaut, J. C., O’Connor, A. M., Wood, T. J., Hack, T. F., Siminoff, L., Gordon, E., et al. (2003). Validation of a decision regret scale. Medical Decision Making, 23(4), 281–292.PubMedGoogle Scholar
  18. Bryman, A., & Cramer, D. (1994). Quantitative data analysis for social scientists. London: Routledge.Google Scholar
  19. Cappelli, M., Verma, S., Korneluk, Y., Hunter, A., Tomiak, E., Allanson, J., et al. (2005). Psychological and genetic counseling implications for adolescent daughters of mothers with breast cancer. Clinical Genetics, 67(6), 481–491.PubMedGoogle Scholar
  20. Carlsson, A. H., Bjorvatn, C., Engebretsen, L. F., Berglund, G., & Natvig, G. K. (2004). Psychosocial factors associated with quality of life among individuals attending genetic counseling for hereditary cancer. Journal of Genetic Counseling, 13(5), 425–445.PubMedGoogle Scholar
  21. Carver, C. S. (1997). You want to measure coping but your protocol’s too long: Consider the Brief COPE. International Journal of Behavioral Medicine, 4(1), 92–100.PubMedGoogle Scholar
  22. Carver, C. S., Scheier, M. F., & Weintraub, J. K. (1989). Assessing coping strategies: A theoretically based approach. Journal of Personality and Social Psychology, 56(2), 267–283.PubMedGoogle Scholar
  23. Cella, D., Hughes, C., Peterman, A., Chang, C., Peshkin, B., Schwartz, M., et al. (2002). A brief assessment of concerns associated with genetic testing for cancer: The Multidimensional Impact of Cancer Risk Assessment (MICRA) Questionnaire. Health Psychology, 21(6), 564–572.PubMedGoogle Scholar
  24. Cella, D., Mahon, S. M., & Donovan, M. (1990). Cancer recurrence as a traumatic event. Behavioral Medicine, 16, 15–22.PubMedCrossRefGoogle Scholar
  25. Chapman, E., & Bilton, D. (2004). Patients’ knowledge of cystic fibrosis: Genetic determinism and implications for treatment. Journal of Genetic Counseling, 13(5), 369–385.PubMedGoogle Scholar
  26. Christensen, A., Moran, P., Lawton, W., Stallman, D., & Voigts, A. (1997). Monitoring attentional style and medical regimen adherence in hemodialysis patients. Health Psychology, 16(3), 256–262.PubMedGoogle Scholar
  27. Claes, E., Evers-Kiebooms, G., Boogaerts, A., Decruyenaere, M., Denayer, L., & Legius, E. (2003). Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. American Journal of Medical Genetics, 116A, 11–19.PubMedGoogle Scholar
  28. Clarke, A., Parsons, E., & Williams, A. (1996). Outcomes and process in genetic counseling. Clinical Genetics, 50(6), 462–469.PubMedCrossRefGoogle Scholar
  29. Codori, A. M., Petersen, G. M., Miglioretti, D. L., & Boyd, P. (2001). Health beliefs and endoscopic screening for colorectal cancer: Potential for cancer prevention. Preventive Medicine, 33(2 Pt 1), 128–136.PubMedGoogle Scholar
  30. Collins, V., Halliday, J., Warren, R., & Williamson, R. (2000). Cancer worries, risk perceptions, and associations with interest in DNA testing and clinic satisfaction in a familial colorectal cancer clinic. Clinical Genetics, 58, 460–468.PubMedGoogle Scholar
  31. Cull, A., Anderson, E., Campbell, S., Mackay, J., Smyth, E., & Steel, M. (1999). The impact of genetic counselling about breast cancer risk on women’s risk perceptions and levels of distress. British Journal of Cancer, 79(3/4), 501–508.PubMedGoogle Scholar
  32. Davey, A., Rostant, K., Harrop, K., Goldblatt, J., & O’Leary, P. (2005). Evaluating genetic counseling: Client expectations, psychological adjustment and satisfaction with service. Journal of Genetic Counseling, 14(3), 197–206.PubMedGoogle Scholar
  33. Decruyenaere, M., Evers-Kiebooms, G., Cloostermans, T., Boogaerts, A., Demyttenaere, K., Dom, R., et al. (2003). Psychological distress in the 5-year period after predictive testing for Huntington’s disease. European Journal of Human Genetics, 11(1), 30–38.PubMedGoogle Scholar
  34. Decruyenaere, M., Evers-Kiebooms, G., Denayer, L., & Van den Berghe, H. (1992). Cystic fibrosis: Community knowledge and attitudes towards carrier screening and prenatal diagnosis. Clinical Genetics, 41, 189–196.PubMedCrossRefGoogle Scholar
  35. DeMarco, T., Peshkin, B., Mars, B., & Tercyak, K. (2004). Patient satisfaction with cancer genetic counseling: A psychometric analysis of the Genetic Counseling Satisfaction Scale. Journal of Genetic Counseling, 13(4), 293–304.PubMedGoogle Scholar
  36. Drake, H., Engler-Todd, L., O’Connor, A. M., Surh, L. C., & Hunter, A. (1999). Development and evaluation of a decision aid about prenatal testing for women of advanced maternal age. Journal of Genetic Counseling, 8(4), 217–233.Google Scholar
  37. DudokdeWit, A., Tibben, A., Frets, P., Meijers-Heijboer, E., Devilee, P., Klijn, J., et al. (1997). BRCA1 in the family: A case description of the psychological implications. American Journal of Medical Genetics, 71(1), 63–71.PubMedGoogle Scholar
  38. Epstein, S., Lin, T., Audrain, J., Stefanek, M., Rimer, B., & Lerman, C. (1997). Excessive breast self-examination among first-degree relatives of newly diagnosed breast cancer patients. Psychosomatics, 38(3), 253–261.PubMedGoogle Scholar
  39. Erblich, J., Bovbjerg, D., & Valdimarsdottir, H. (2000). Looking forward and back: Distress among women at familial risk for breast cancer. Annals of Behavioral Medicine, 22(1), 53–59.PubMedGoogle Scholar
  40. Erblich, J., Brown, K., Kim, Y., Valdimarsdottir, H. B., Livingston, B. E., & Bovbjerg, D. H. (2005). Development and validation of a Breast Cancer Genetic Counseling Knowledge Questionnaire. Patient Education and Counseling, 56(2), 182–191.PubMedGoogle Scholar
  41. Foster, C., Eeles, R., Ardern-Jones, A., Moynihan, C., & Watson, M. (2004). Juggling roles and expectations: Dilemmas faced by women talking to relatives about cancer and genetic testing. Psychology & Health, 19(4), 439–455.Google Scholar
  42. Frets, P. G., Verhage, F., & Niermeijer, M. F. (1991). Characteristics of the post-counseling reproductive decision-making process: An explorative study. American Journal of Medical Genetics, 40, 298–303.PubMedGoogle Scholar
  43. Gaff, C., Collins, V., Symes, T., & Halliday, J. (2005). Facilitating family communication about predictive genetic testing: Probands’ perceptions. Journal of Genetic Counseling, 14(2), 133–140.PubMedGoogle Scholar
  44. Goel, V., Glazier, R., Holzapfel, S., Pugh, P., Summers, A., Goel, V., et al. (1996). Evaluating patient’s knowledge of maternal serum screening. Prenatal Diagnosis, 16(5), 425–430.PubMedGoogle Scholar
  45. Gordon, C., Walpole, I., Zubrick, S., & Bower, C. (2003). Population screening for cystic fibrosis: Knowledge and emotional consequences 18 months later. American Journal of Medical Genetics, 120A, 199–208.PubMedGoogle Scholar
  46. Green, M. J., Peterson, S. K., Baker, M. W., Harper, G. R., Friedman, L. C., Rubinstein, W. S., et al. (2004). Effect of a computer-based decision aid on knowledge, perceptions, and intentions about genetic testing for breast cancer susceptibility: A randomized controlled trial. Journal of the American Medical Association, 292(4), 442–452.PubMedGoogle Scholar
  47. Green, J., Richards, M., Murton, F., Statham, H., & Hallowell, N. (1997). Family communication and genetic counseling: The case of hereditary breast and ovarian cancer. Journal of Genetic Counseling, 6(1), 45–60.Google Scholar
  48. Grody, W. W., Dunkel-Schetter, C., Tatsugawa, Z. H., Fox, M. A., Fang, C. Y., Cantor, R. M., et al. (1997). PCR-based screening for cystic fibrosis carrier mutations in an ethnically diverse pregnant population. American Journal of Human Genetics, 60(4), 935–947.PubMedGoogle Scholar
  49. Grosfeld, F. J., Lips, C. J., Beemer, F. A., Blijham, G. H., Quirijnen, J. M., Mastenbroek, M. P., et al. (2000). Distress in MEN 2 family members and partners prior to DNA test disclosure. American Journal of Medical Genetics, 91(1), 1–7.PubMedGoogle Scholar
  50. Hallowell, N., Ardern-Jones, A., Eeles, R., Foster, C., Lucassen, A., Moynihan, C., et al. (2005). Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: Patterns, priorities and problems. Clinical Genetics, 67(6), 492–502.PubMedGoogle Scholar
  51. Hamilton, R. J., Bowers, B. J., & Williams, J. K. (2005). Disclosing genetic test results to family members. Journal of Nursing Scholarship, 37(1), 18–24.PubMedGoogle Scholar
  52. Helder, D., Kaptein, A., van Kempen, G., Weinman, J., van Houwelingen, H., & Roos, R. (2002). Living with Huntington’s disease: Illness perceptions, coping mechanisms, and patients’ well-being. British Journal of Health Psychology, 7, 449–462.PubMedGoogle Scholar
  53. Holahan, C. J., & Moos, R. H. (1986). Personality, coping, and family resources in stress resistance: A longitudinal analysis. Journal of Personality and Social Psychology, 51(2), 389–395.PubMedGoogle Scholar
  54. Holmes-Rovner, M., Kroll, J., Schmitt, N., Rovner, D. R., Breer, M. L., Rothert, M. L., et al. (1996). Patient satisfaction with health care decisions: The satisfaction with decision scale. Medical Decision Making, 16(1), 58–64.PubMedGoogle Scholar
  55. Horowitz, M., Wilner, N., & Alvarez, W. (1979). The impact of event scale: A measure of subjective stress. Psychosomatic Medicine, 41, 209–218.PubMedGoogle Scholar
  56. Hudson, W. (1992). The WALMYR assessment scales scoring manual. Tempe, AZ: WLMYR Publishing Co.Google Scholar
  57. Hughes, C., Lerman, C., Schwartz, M., Peshkin, B., Wenzel, L., Narod, S., et al. (2002). All in the family: Evaluation of the process and content of sisters’ communication about BRCA1 and BRCA2 genetic test results. American Journal of Medical Genetics, 107, 143–150.PubMedGoogle Scholar
  58. Hughes, C., Lynch, H., Durham, C., Snyder, C., Lemon, S., Narod, S., et al. (1999). Communication of BRCA 1/2 test results in hereditary breast cancer families. Cancer Research, Therapy & Control, 8, 51–59.Google Scholar
  59. Huiart, L., Eisinger, F., Stoppa-Lyonnet, D., Lasset, C., Nogues, C., Vennin, P., et al. (2002). Effects of genetic consultation on perception of a family risk of breast/ovarian cancer and determinants of inaccurate perception after the consultation. Journal of Clinical Epidemiology, 55(7), 665–675.PubMedGoogle Scholar
  60. Hunter, A., Cappelli, M., Humphreys, L., Allanson, J., Chiu, T., Peeters, C., et al. (2005). A randomized trial comparing alternative approaches to prenatal diagnosis counseling in advanced maternal age patients. Clinical Genetics, 67, 303–313.PubMedGoogle Scholar
  61. Jaques, A. M., Sheffield, L. J., Halliday, J. L., Jaques, A. M., Sheffield, L. J., & Halliday, J. L. (2005). Informed choice in women attending private clinics to undergo first-trimester screening for Down syndrome. Prenatal Diagnosis, 25(8), 656–664.PubMedGoogle Scholar
  62. Julian-Reynier, C., Eisinger, F., Chabal, F., Aurran, Y., Bignon, Y.-J., Machelard-Roumagnac, M., et al. (1999). Cancer genetic consultation and anxiety in healthy consultees. Psychology & Health, 14, 379–390.Google Scholar
  63. Julian-Reynier, C., Eisinger, F., Chabal, F., Lasset, C., Nogues, C., Stoppa-Lyonnet, D., et al. (2000). Disclosure to the family of breast/ovarian cancer genetic test results: Patient’s willingness and associated factors. American Journal of Medical Genetics, 94(1), 13–18.PubMedGoogle Scholar
  64. Julian-Reynier, C., Eisinger, F., Vennin, P., Chabal, F., Aurran, Y., Nogues, C., et al. (1996). Attitudes towards cancer predictive testing and transmission of information to the family. Journal of Medical Genetics, 33, 731–736.PubMedGoogle Scholar
  65. Kaiser, A. S., Ferris, L. E., Pastuszak, A. L., Llewellyn-Thomas, H., Johnson, J. A., Conacher, S., et al. (2002). The effects of prenatal group genetic counseling on knowledge, anxiety and decisional conflict: Issues for nuchal translucency screening. Journal of Obstetrics and Gynaecology, 22(3), 246–255.PubMedGoogle Scholar
  66. Kash, K. M., Holland, J. C., Halper, M. S., & Miller, D. G. (1992). Psychological distress and surveillance behaviors of women with a family history of breast cancer. Journal of the National Cancer Institute, 84(1), 24–30.PubMedGoogle Scholar
  67. Keller, M., Jost, R., Haunstetter, C. M., Kienle, P., Knaebel, H. P., Gebert, J., et al. (2002). Comprehensive genetic counseling for families at risk for HNPCC: Impact on distress and perceptions. Genet Test, 6(4), 291–302.PubMedGoogle Scholar
  68. Kenen, R., Ardern-Jones, A., & Eeles, R. (2004). We are talking, but are they listening? Communication patterns in families with a history of breast/ovarian cancer. Psycho-Oncology, 13, 335–345.PubMedGoogle Scholar
  69. Kent, G., Howie, H., Fletcher, M., Newbury-Ecob, R., & Hosie, K. (2000). The relationship between perceived risk, thought intrusiveness and emotional well-being in women receiving counseling for breast cancer risk in a family history clinic. British Journal of Health Psychology, 5, 15–26.Google Scholar
  70. Killgore, W. D. (1999). The visual analogue mood scale: Can a single-item scale accurately classify depressive mood state? Psychological Reports, 85(3 Pt 2), 1238–1243.PubMedGoogle Scholar
  71. Koehly, L. M., Peterson, S. K., Watts, B. G., Kempf, K. K. G., Vernon, S. W., & Gritz, E. R. (2003). A social network analysis of communication about hereditary nonpolyposis colorectal cancer genetic testing and family functioning. Cancer Epidemiology, Biomarkers & Prevention, 12(4), 304–313.Google Scholar
  72. Lea, D. H. (1996). Emerging quality improvement measures in genetic counseling. Journal of Genetic Counseling, 5(3), 123–137.Google Scholar
  73. Leonard, K., Bartholomew, L., Swank, P., & Parcel, G. (1995). A comparison of two approaches to education about carrier testing for cystic fibrosis. Journal of Genetic Counseling, 4(5), 97–113.Google Scholar
  74. Lerman, C., Biesecker, B., Benkendorf, J., Kerner, J., Gomez-Caminero, A., Hughes, C., et al. (1997a). Controlled trial of pretest education approaches to enhance informed decision-making for BRCA1 gene testing. Journal of the National Cancer Institute, 89(2), 148–157.PubMedGoogle Scholar
  75. Lerman, C., Daly, M., Sands, C., Balshem, A., Lustbader, E., Heggan, T., et al. (1993). Mammography adherence and psychological distress among women at risk for breast cancer. Journal of the National Cancer Institute, 85(13), 1074–1080.PubMedGoogle Scholar
  76. Lerman, C., Gold, K., Audrain, J., Lin, T. H., Boyd, N. R., Orleans, C. T., et al. (1997b). Incorporating biomarkers of exposure and genetic susceptibility into smoking cessation treatment: Effects on smoking-related cognitions, emotions, and behavior change. Health Psychology, 16(1), 87–99.PubMedGoogle Scholar
  77. Lerman, C., Peshkin, B., Hughes, C., & Isaacs, C. (1998). Family disclosure in genetic testing for cancer susceptibility: Determinants and consequences. Journal of Health Care Law & Policy, 1, 353–372.Google Scholar
  78. Lerman, C., Seay, J., Balshem, A., & Audrain, J. (1995). Interest in genetic testing among first-degree relatives of breast cancer patients. American Journal of Medical Genetics, 57, 385–392.PubMedGoogle Scholar
  79. Lesser, Y., & Rabinowitz, J. (2001). Elective amniocentesis in low-risk pregnancies: Decision making in the era of information and uncertainty. American Journal of Public Health, 91(4), 639–641.PubMedGoogle Scholar
  80. Lloyd, S., Watson, M., Waites, B., Meyer, L., Eeles, R., Ebbs, S., et al. (1996). Familial breast cancer: A controlled study of risk perception, psychological morbidity and health beliefs in women attending for genetic counseling. British Journal of Cancer, 74(3), 482–487.PubMedGoogle Scholar
  81. Lobb, E. A., Butow, P. N., Meiser, B., Barratt, A., Gaff, C., Young, M. A., et al. (2002a). Tailoring communication in consultations with women from high risk breast cancer families. British Journal of Cancer, 87(5), 502–508.PubMedGoogle Scholar
  82. Lobb, E., Butow, P., Meiser, B., Barratt, A., Kirk, J., Gattas, M., et al. (2002b). The use of audiotapes in consultations with women from high-risk breast cancer families: A randomized trial. Journal of Medical Genetics, 39, 697–703.PubMedGoogle Scholar
  83. Lodder, L., Frets, P., Trijsburg, R., Meijers-Heijboer, E., Klijn, J., Duivenvoorden, H., et al. (2001). Psychological impact of receiving a BRCA1/BRCA2 test result. American Journal of Medical Genetics, 98(1), 15–24.PubMedGoogle Scholar
  84. Mancini, J., Nogues, C., Adenis, C., Berthet, P., Bonadona, V., Chompret, A., et al. (2006). Impact of an information booklet on satisfaction and decision-making about BRCA genetic testing. European Journal of Cancer, 42(7), 871–881.PubMedGoogle Scholar
  85. Marteau, T. M., & Bekker, H. (1992). The development of a six-item short form of the state scale of the Spielberger State-Trait Anxiety Inventory (STAI). British Journal of Clinical Psychology, 31, 301–306.PubMedGoogle Scholar
  86. Marteau, T., Johnston, M., Plenicar, M., Shaw, R. W., & Slack, J. (1988). Development of a self- administered questionnaire to measure women’s knowledge of prenatal screening and diagnostic tests. Journal of Psychosomatic Research, 32(4/5), 403–408.PubMedGoogle Scholar
  87. Marteau, T. M., Kidd, J., Cook, R., Michie, S., Johnston, M., Slack, J., et al. (1991). Perceived risk not actual risk predicts uptake of amniocentesis. British Journal of Obstetrics and Gynaecology, 98(3), 282–286.PubMedGoogle Scholar
  88. Matloff, E. T., Moyer, A., Shannon, K. M., Niendorf, K. B., Col, N. F., Matloff, E. T., et al. (2006). Healthy women with a family history of breast cancer: Impact of a tailored genetic counseling intervention on risk perception, knowledge, and menopausal therapy decision making. Journal of Women’s Health, 15(7), 843–856.PubMedGoogle Scholar
  89. McBride, C. M., Bepler, G., Lipkus, I. M., Lyna, P., Samsa, G., Albright, J., et al. (2002). Incorporating genetic susceptibility feedback into a smoking cessation program for African-American smokers with low income. Cancer Epidemiology, Biomarkers & Prevention, 11(6), 521–528.Google Scholar
  90. McCaul, K. D., Branstetter, A. D., O’Donnell, S. M., Jacobson, K., & Quinlan, K. B. (1998). A descriptive study of breast cancer worry. Journal of Behavioral Medicine, 21(6), 565–579.PubMedGoogle Scholar
  91. McCaul, K. D., Branstetter, A. D., Schroeder, D. M., & Glasgow, R. E. (1996). What is the relationship between breast cancer risk and mammography screening? A meta-analytic review. Health Psychology, 15(6), 423–429.PubMedGoogle Scholar
  92. McCormack, H. M., Horne, D. J., & Sheather, S. (1988). Clinical applications of visual analogue scales: A critical review. Psychological Medicine, 18(4), 1007–1019.PubMedCrossRefGoogle Scholar
  93. McDowell, I., & Newell, C. (1996). Measuring health: A guide to rating scales and questionnaires (2nd ed.). New York: Oxford University Press.Google Scholar
  94. McGivern, B., Everett, J., Yager, G. G., Baumiller, R. C., Hafertepen, A., & Saal, H. M. (2004). Family communication about positive BRCA1 and BRCA2 genetic test results. Genetics in Medicine, 6(6), 503–509.PubMedGoogle Scholar
  95. McInerney-Leo, A., Biesecker, B., Hadley, D., Kase, R., Giambarresi, T., Johnson, E., et al. (2005). BRCA1/2 testing in hereditary breast and ovarian cancer families II: Impact on relationships. American Journal of Medical Genetics, 133A(2), 165–169.Google Scholar
  96. Meiser, B., Butow, P., Schnieden, V., Gattas, M., Gaff, C., Harrop, K., et al. (2000). Psychological characteristics of women at increased risk of developing hereditary breast cancer. Psychology, Health & Medicine, 5(4), 377–388.Google Scholar
  97. Meiser, B., Dunn, S., Dixon, J., & Powell, L. W. (2005). Psychological adjustment and knowledge about hereditary hemochromatosis in a clinic-based sample: A prospective study. Journal of Genetic Counseling, 14(6), 453–463.PubMedGoogle Scholar
  98. Mesters, I., van den Borne, H., McCormick, L., Pruyn, J., de Boer, M., & Imbos, T. (1997). Openness to discuss cancer in the nuclear family: Scale, development, and validation. Psychosomatic Medicine, 59(3), 269–279.PubMedGoogle Scholar
  99. Michie, S., Dormandy, E., & Marteau, T. M. (2002). The multi-dimensional measure of informed choice: A validation study. Patient Education and Counseling, 48(1), 87–91.PubMedGoogle Scholar
  100. Michie, S., French, D., Allanson, A., Bobrow, M., & Marteau, T. M. (1997). Information recall in genetic counselling: A pilot study of its assessment. Patient Education and Counseling, 32(1–2), 93–100.PubMedGoogle Scholar
  101. Miller, S. (1987). Monitoring and blunting: Validation of a questionnaire to assess styles of information seeking under threat. Journal of Personality and Social Psychology, 52(2), 345–353.PubMedGoogle Scholar
  102. Miller, S. (1995). Monitoring versus blunting styles of coping with cancer influence the information patients want and need about their disease: Implications for cancer screening and management. Cancer, 76(2), 167–177.PubMedGoogle Scholar
  103. Miller, S. M. (1996). Monitoring and blunting of threatening information: Cognitive interference and facilitation in the coping process. In I. Sarason, G. Pierce, & B. Sarason (Eds.), Cognitive interference: Theories, methods, and findings (pp. 175–190). Hillsdale, NJ, England: Lawrence Erlbaum Associates.Google Scholar
  104. Miller, S., Brody, D., & Summerton, J. (1988). Styles of coping with threat: Implications for health. Journal of Personality and Social Psychology, 54(1), 142–148.PubMedGoogle Scholar
  105. Miller, M. D., & Ferris, D. G. (1993). Measurement of subjective phenomena in primary care research: The visual analogue scale. Family Practice Research Journal, 13(1), 15–24.PubMedGoogle Scholar
  106. Miller, S. M., Fleisher, L., Roussi, P., Buzaglo, J. S., Schnoll, R., Slater, E., et al. (2005a). Facilitating informed decision making about breast cancer risk and genetic counseling among women calling the NCI’s Cancer Information Service. Journal of Health Communication, 1, 119–136.Google Scholar
  107. Miller, S., & Mangan, C. (1983). Interacting effects of information and coping style in adapting to gynecologic stress: Should the doctor tell all? Journal of Personality and Social Psychology, 45(1), 223–236.PubMedGoogle Scholar
  108. Miller, S., Roussi, P., Buzaglo, J., Sherman, K., Godwin, A., Balshem, A., et al. (2005b). Enhanced counselling for women undergoing BRCA1/2 testing: Impact on subsequent decision making about risk reduction behaviours. Health Education & Behavior, 32(5), 654–667.Google Scholar
  109. Miller, D. W., & Starr, M. K. (1967). The structure of human decisions. Englewood Cliffs, New Jersey: Prentice-Hall.Google Scholar
  110. Myers, J. K., & Weissman, M. M. (1980). Use of a self-report symptom scale to detect depression in a community sample. American Journal of Psychiatry, 137(9), 1081–1084.PubMedGoogle Scholar
  111. Nagle, C., Lewis, S., Meiser, B., Metcalfe, S., Carlin, J. B., Bell, R., et al. (2006). Evaluation of a decision aid for prenatal testing of fetal abnormalities: A cluster randomized trial [ISRCTN22532458]. BMC Public Health, 6, 96.PubMedGoogle Scholar
  112. Nisselle, A. E., Delatycki, M. B., Collins, V., Metcalfe, S., Aitken, M. A., du Sart, D., et al. (2004). Implementation of HaemScreen, a workplace-based genetic screening program for hemochromatosis. Clinical Genetics, 65(5), 358–367.PubMedGoogle Scholar
  113. Nordin, K., Liden, A., Hansson, M., Rosenquist, R., & Berglund, G. (2002). Coping style, psychological distress, risk perception, and satisfaction in subjects attending genetic counselling for hereditary cancer. Journal of Medical Genetics, 39, 689–694.PubMedGoogle Scholar
  114. Nunnally, J. (1970). Introduction to psychological measurement. New York: McGraw-Hill.Google Scholar
  115. Nyenhuis, D. L., Stern, R. A., Yamamoto, C., Luchetta, T., & Arruda, J. E. (1997). Standardization and validation of the visual analog mood scales. Clinical Neuropsychologist, 11(4), 407–415.Google Scholar
  116. O’Connor, A. M. (1995). Validation of a decisional conflict scale. Medical Decision Making, 15(1), 25–30.PubMedGoogle Scholar
  117. O’Connor, A. (1997). Decisional conflict. In G. K. McFarland, & E. A. McFarlane (Eds.), Nursing diagnosis and intervention (3rd Ed. pp.486–496). Toronto: The C.V. Mosby Company.Google Scholar
  118. O’Connor, A. M., Stacey, D., Entwistle, V., Llewellyn-Thomas, H., Rovner, D., Holmes-Rovner, M., et al. (2006). Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews, 1, 1.Google Scholar
  119. O’Connor, A., Tugwell, P., Welles, G. A., Elmslie, T., Jolly, E., Hollingworth, G., et al. (1998). Randomized trial of a portable, self-administered decision aid for postmenopausal women considering long-term preventative hormone replacement therapy. Medical Decision Making, 18, 295–303.PubMedGoogle Scholar
  120. Olson, D., Portner, J., & Lavee, Y. (1985). Family Adaptability and Cohesion Evaluation Scale (FACES-III). St. Pail, MN: University of Minnesota.Google Scholar
  121. Ondrusek, N., Warner, E., Goel, V., Ondrusek, N., Warner, E., & Goel, V. (1999). Development of a knowledge scale about breast cancer and heredity (BCHK). Breast Cancer Research and Treatment, 53(1), 69–75.PubMedGoogle Scholar
  122. Peterson, S. K., Pentz, R. D., Blanco, A. M., Ward, P. A., Watts, B. G., Marani, S. K., et al. (2006). Evaluation of a decision aid for families considering p53 genetic counseling and testing. Genetics in Medicine, 8(4), 226–233.PubMedGoogle Scholar
  123. Peterson, S. K., Watts, B. G., Koehly, L. M., Vernon, S. W., Baile, W. F., Kohlmann, W. K., et al. (2003). How families communicate about HNPCC genetic testing: Findings from a qualitative study. American Journal of Medical Genetics, Part C, Seminars in Medical Genetics, 119(1), 78–86.Google Scholar
  124. Phipps, S., & Zinn, A. B. (1986). Psychological response to amniocentesis: II. Effects of coping style. American Journal of Medical Genetics, 25, 143–148.PubMedGoogle Scholar
  125. Pierce, P. F. (1993). Deciding on breast cancer treatment: A description of decision behavior. Nursing Research, 42(1), 22–28.PubMedGoogle Scholar
  126. Pieterse, A., van Dulmen, A., Beemer, F., Bensing, J., & Ausems, M. (2007). Cancer genetic counseling: Communication and counselees’ post-visit satisfaction, cognitions, anxiety, and needs fulfillment. Journal of Genetic Counseling, 16(1), 85–96.PubMedGoogle Scholar
  127. Radloff, L. (1977). The CES-D Scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385–401.Google Scholar
  128. Rapp, R. (1991). Communicating about the new reproductive technologies: Cultural, interpersonal, and linguistic determinants of understanding. In J. Rodin & A. Collins (Eds.), Women and new reproductive technologies: Medical, psychosocial, legal, and ethical dilemmas (pp. 135–152). Hillsdale, NJ, England: Lawrence Erlbaum Associates, Inc.Google Scholar
  129. Read, C., Perry, D., & Duffy, M. (2005). Design and psychometric evaluation of the psychological adaptation to genetic information scale. Journal of Nursing Scholarship, 37(3), 203–208.PubMedGoogle Scholar
  130. Redman, B. (2006). Review of measurement instruments in clinical and research ethics, 1999–2003. Journal of Medical Ethics, 32, 153–156.PubMedGoogle Scholar
  131. Rees, G., Fry, A., Cull, A., & Sutton, S. (2004). Illness perceptions and distress in women at increased risk of breast cancer. Psychology & Health, 19(6), 749–765.Google Scholar
  132. Reichelt, J., Heimdal, K., Moller, P., & Dahl, A. (2004). BRCA1 testing with definitive results: A prospective study of psychological distress in a large clinic-based sample. Family Cancer, 3, 21–28.Google Scholar
  133. Resta, R., Biesecker, B., Bennett, R., Blum, S., Estabrooks Hahn, S., Strecker, M., et al. (2006). A new definition of genetic counseling: National Society of Genetic Counselors’ Task Force Report. Journal of Genetic Counseling, 15(2), 77–83.PubMedGoogle Scholar
  134. Rostant, K., Steed, L., & O’Leary, P. (2003). Survey of the knowledge, attitudes and experiences of Western Australian women in relation to prenatal screening and diagnostic procedures. The Australian and New Zealand Journal of Obstetrics & Gynaecology, 43(2), 134–138.Google Scholar
  135. Roter, D. (1997). The Roter method of interaction process analysis. Baltimore: John Hopkins University.Google Scholar
  136. Rowe, H. J., Fisher, J. R., Quinlivan, J. A., Rowe, H. J., Fisher, J. R. W., & Quinlivan, J. A. (2006). Are pregnant Australian women well informed about prenatal genetic screening? A systematic investigation using the multidimensional measure of informed choice. The Australian and New Zealand Journal of Obstetrics & Gynaecology, 46(5), 433–439.Google Scholar
  137. Roy, C., & Andrews, H. (1999). The Roy adaptation model (2nd ed.). Stamford, CT: Appleton & Lange.Google Scholar
  138. Sainfort, F., & Booske, B. C. (2000). Measuring post-decision satisfaction. Medical Decision Making, 20(1), 51–61.PubMedGoogle Scholar
  139. Sarantakos, S. (1997). Social research. South Melbourne: Macmillan Education Australia.Google Scholar
  140. Scheier, M. F., & Carver, C. S. (1985). Optimism, coping, and health: Assessment and implications of generalized outcome expectancies. Health Psychology, 4(3), 219–247.PubMedGoogle Scholar
  141. Scheier, M. F., Carver, C. S., & Bridges, M. W. (1994). Distinguishing optimism from neuroticism (and trait anxiety, self-mastery, and self-esteem): A reevaluation of the Life Orientation Test. Journal of Personality and Social Psychology, 67(6), 1063–1078.PubMedGoogle Scholar
  142. Schwartz, M., Benkendorf, J. L., Lerman, C., Isaacs, C., Ryan-Roberston, A., & Johnson, L. (2001). Impact of educational print materials on knowledge, attitudes and interest in BRCA1/BRCA2 testing among Ashkenazi Jewish women. Cancer, 92(4), 932–940.PubMedGoogle Scholar
  143. Schwartz, M., Kaufman, E., Peshkin, B., Isaacs, C., Hughes, C., DeMarco, T., et al. (2003a). Bilateral prophylactic oophorectomy and ovarian cancer screening following BRCA1/BRCA2 mutation testing. Journal of Clinical Oncology, 21(21), 4034–4041.PubMedGoogle Scholar
  144. Schwartz, M., Taylor, K., & Willard, K. (2003b). Prospective association between distress and mammography utilisation among women with a family history of breast cancer. Journal of Behavioral Medicine, 26(2), 105–117.PubMedGoogle Scholar
  145. Shiloh, S., Avdor, O., & Goodman, R. M. (1990). Satisfaction with genetic counseling: Dimensions and measurement. American Journal of Medical Genetics, 37(4), 522–529.PubMedGoogle Scholar
  146. Shiloh, S., Rashuk-Rosenthal, D., & Benyamini, Y. (2002). Illness causal attributions: An exploratory study of their structure and associations with other illness cognitions and perceptions of control. Journal of Behavioral Medicine, 25(4), 373–394.PubMedGoogle Scholar
  147. Skinner, H., Steinhauer, P., & Santa-Barbara, J. (1995). The Family Assessment Measure-III (FAM-III). North Tonawanda, New York: Multi-Health Systems, Inc.Google Scholar
  148. Skirton, H. (2001). The client’s perspective of genetic counseling—A grounded theory study. Journal of Genetic Counseling, 10(4), 311–329.Google Scholar
  149. Skirton, H., Parsons, E., & Ewings, P. (2005). Development of an audit tool for genetic services. American Journal of Medical Genetics, 136A(2), 122–127.Google Scholar
  150. Smith, T. W., Pope, M. K., Rhodewalt, F., & Poulton, J. L. (1989). Optimism, neuroticism, coping, and symptom reports: An alternative interpretation of the Life Orientation Test. Journal of Personality and Social Psychology, 56(4), 640–648.PubMedGoogle Scholar
  151. Spielberger, C. (1983). State-Trait Anxiety Inventory STAI (Form Y). Palo Alto, CA: Mond Garden, Inc.Google Scholar
  152. Stalmeier, P. F., Roosmalen, M. S., Verhoef, L. C., Hoekstra-Weebers, J. E., Oosterwijk, J. C., Moog, U., et al. (2005). The decision evaluation scales. Patient Education and Counseling, 57(3), 286–293.PubMedGoogle Scholar
  153. Steptoe, A., & O’Sullivan, J. (1986). Monitoring and blunting coping styles in women prior to surgery. British Journal of Clinical Psychology, 25, 143–144.PubMedGoogle Scholar
  154. Streiner, D., & Norman, G. (1995). Health measurement scales. Oxford: Oxford University Press.Google Scholar
  155. Sujansky, E., Kreutzer, S. B., Johnson, A. M., Lezotte, D. C., Schrier, R. W., & Gabow, P. A. (1990). Attitudes of at-risk and affected individuals regarding presymptomatic testing for autosomal dominant polycystic kidney disease. American Journal of Medical Genetics, 35, 510–515.PubMedGoogle Scholar
  156. Taylor, S. E. (1983). Adjustment to threatening events: A theory of cognitive adaptation. American Psychologist, 38(11), 1161–1173.Google Scholar
  157. Tercyak, K., DeMarco, T., Mars, B., & Peshkin, B. (2004). Women’s satisfaction with genetic counseling for hereditary breast-ovarian cancer: Psychological aspects. American Journal of Medical Genetics, 131A, 36–41.Google Scholar
  158. Tercyak, K., Hughes, C., Main, D., Snyder, C., Lynch, J., Lynch, H., et al. (2001a). Parental communication of BRCA1/2 genetic test results to children. Patient Education and Counseling, 42(3), 213–224.PubMedGoogle Scholar
  159. Tercyak, K., Johnson, S., Roberts, S., & Cruz, A. (2001b). Psychological response to prenatal genetic counseling and amniocentesis. Patient Education and Counseling, 43, 73–84.PubMedGoogle Scholar
  160. Tercyak, K. P., Lerman, C., Peshkin, B. N., Hughes, C., Main, D., Isaacs, C., et al. (2001c). 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 Psychology, 20(3), 217–222.PubMedGoogle Scholar
  161. Tercyak, K., Peshkin, B., DeMarco, T., Brogan, B., & Lerman, C. (2002). Parent–child factors and their effect on communicating BRCA1/2 test results to children. Patient Education and Counseling, 47, 145–153.PubMedGoogle Scholar
  162. Thompson, S. C., Sobolew-Shubin, A., Galbraith, M. E., Schwankovsky, L., & Cruzen, D. (1993). Maintaining perceptions of control: Finding perceived control in low-control circumstances. Journal of Personality and Social Psychology, 64(2), 293–304.PubMedGoogle Scholar
  163. Tiller, K., Meiser, B., Gaff, C., Kirk, J., Dudding, T., Phillips, K. A., et al. (2006). A randomized controlled trial of a decision aid for women at increased risk of ovarian cancer. Medical Decision Making, 26(4), 360–372.PubMedGoogle Scholar
  164. Vadaparampil, S., Ropka, M., & Stefanek, M. (2005). Measurement of psychological factors associated with genetic testing for hereditary breast, ovarian, and colon cancers. Family Cancer, 4, 195–206.Google Scholar
  165. Valdimarsdottir, H., Bovbjerg, D. H., Kash, K., Holland, J., Osborne, M., & Miller, D. (1995). Psychological distress in women with a familial risk of breast cancer. Psycho-Oncology, 4, 133–141.Google Scholar
  166. van Oostrom, I., Meijers-Heijboer, H., Duivenvoorden, H. J., Brocker-Vriends, A. H. J. T., van Asperen, C. J., Sijmons, R. H., et al. (2007a). 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 Education and Counseling, 65(1), 58–68.PubMedGoogle Scholar
  167. van Oostrom, I., Meijers-Heijboer, H., Duivenvoorden, H. J., Brocker-Vriends, A. H. J. T., van Asperen, C. J., Sijmons, R. H., et al. (2007b). Family system characteristics and psychological adjustment to cancer susceptibility genetic testing: A prospective study. Clinical Genetics, 71(1), 35–42.PubMedGoogle Scholar
  168. van Oostrom, I., Meijers-Heijboer, H., Lodder, L., Duivenvoorden, H., van Gool, A., Seynaeve, C., et al. (2003). Long-term psychological impact of carrying a BRCA1/2 mutation and prophylactic surgery: A 5-year follow-up study. Journal of Clinical Oncology, 21(20), 3867–3874.PubMedGoogle Scholar
  169. van Zuuren, F. (1993). Coping style and anxiety during prenatal diagnosis. Journal of Reproductive and Infant Psychology, 11, 57–59.Google Scholar
  170. van Zuuren, F. J., van Schie, E. C., & van Baaren, N. K. (1997). Uncertainty in the information provided during genetic counseling. Patient Education and Counseling, 32(1–2), 129–139.PubMedCrossRefGoogle Scholar
  171. Verdier-Taillefer, M. H., Gourlet, V., Fuhrer, R., & Alperovitch, A. (2001). Psychometric properties of the Center for Epidemiologic Studies—Depression scale in multiple sclerosis. Neuroepidemiology, 20(4), 262–267.PubMedGoogle Scholar
  172. Wakefield, C., Meiser, B., Homewood, J., Peate, M., Taylor, A., Lobb, E., et al. (2007). A randomized controlled trial of a decision aid for women considering genetic testing for breast and ovarian cancer risk. Breast Cancer Research and Treatment (in press). DOI  10.1007/s10549-007-9539-2.
  173. Warner, E., Carroll, J. C., Heisey, R. E., Goel, V., Meschino, W. S., Lickley, H. L. A., et al. (2003). Educating women about breast cancer—An intervention for women with a family history of breast cancer. Canadian Family Physician, 49, 56–63.PubMedGoogle Scholar
  174. Watson, M., Duvivier, V., Wade Walsh, M., Ashley, S., Davidson, J., Papaikonomou, M., et al. (1998). Family history of breast cancer: What do women understand and recall about their genetic risk? Clinical Genetics, 35, 731–738.Google Scholar
  175. Watson, M., Lloyd, S., Davidson, J., Meyer, L., Eeles, R., Ebbs, S., et al. (1999). The impact of genetic counselling on risk perception and mental health in women with a family history of breast cancer. British Journal of Cancer, 79(5–6), 868–874.PubMedGoogle Scholar
  176. Weissman, M. M., Sholomskas, D., Pottenger, M., Prusoff, B. A., & Locke, B. Z. (1977). Assessing depressive symptoms in five psychiatric populations: A validation study. American Journal of Epidemiology, 106(3), 203–214.PubMedGoogle Scholar
  177. Wewers, M. E., & Lowe, N. K. (1990). A critical review of visual analogue scales in the measurement of clinical phenomena. Research in Nursing & Health, 13(4), 227–236.Google Scholar
  178. Williams, J. K., Skirton, H., Reed, D., Johnson, M., Maas, M., & Daack-Hirsch, S. (2001). Genetic counseling outcomes validation by genetics nurses in the UK and US. Journal of Nursing Scholarship, 33(4), 369–374.PubMedGoogle Scholar
  179. Wilson, B. J., Forrest, K., van Teijlingen, E. R., McKee, L., Haites, N., Matthews, E., et al. (2004). Family communication about genetic risk: The little that is known. Community Genetics, 7(1), 15–24.PubMedGoogle Scholar
  180. Zakowski, S. G., Valdimarsdottir, H. B., Bovbjerg, D. H., Borgen, P., Holland, J., Kash, K., et al. (1997). Predictors of intrusive thoughts and avoidance in women with family histories of breast cancer. Annals of Behavioral Medicine, 19(4), 362–369.PubMedCrossRefGoogle Scholar
  181. Zigmond, A., & Snaith, R. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67(6), 361–370.PubMedGoogle Scholar
  182. Zilberg, N., Weiss, D., & Horowitz, M. (1982). Impact of event scale: A cross-sectional validation study and some empirical evidence supporting a conceptual model of stress response syndromes. Journal of Consulting and Clinical Psychology, 50, 407–414.PubMedGoogle Scholar

Copyright information

© National Society of Genetic Counselors, Inc. 2007

Authors and Affiliations

  • Nadine A. Kasparian
    • 1
    • 2
  • Claire E. Wakefield
    • 1
    • 2
  • Bettina Meiser
    • 1
    • 2
  1. 1.Psychosocial Research Group, Department of Medical OncologyPrince of Wales HospitalRandwickAustralia
  2. 2.School of PsychiatryUniversity of NSWRandwickAustralia

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