Genetic counseling does not fulfill the counselees' need for certainty in hereditary breast/ovarian cancer families: an explorative assessment. Issue 5 (9th July 2012)

• Record Type: Journal Article
• Authors: Vos, Joël; Menko, Fred H.; Oosterwijk, Jan C.; van, Christi J.; Stiggelbout, Anne M.; Tibben, Aad
• Is Part Of: Psycho-oncology. Volume 22:Issue 5(2013)
• Page Start: 1167
• Page End: 1176
• Publication Date: 2012-07-09
• Subjects: Cancer -- Psychological aspects -- Periodicals; Cancer -- Social aspects -- Periodicals; Neoplasms -- psychology -- Periodicals; 616.9940019
• DOI: 10.1002/pon.3125
• Languages: English
• ISSNs: 1057-9249

Abstract

<abstract abstract-type="main"> <title>Abstract</title> <sec id="pon3125-sec-0025" sec-type="section"> <title>Background</title> <p>Many cancer‐patients undergo DNA testing in the <italic>BRCA</italic>1/2 genes to receive information about the likelihood that cancer is heritable. Previous nonsystematic studies suggested that DNA testing often does not fulfill the counselees' needs for certainty. We explored the balance between the counselees' need for certainty and perceived certainty (NfC‐PC, i.e., level of fulfillment of NfC) regarding the specific domains of DNA test result, heredity and cancer. We also examined relationships of NfC‐PC with coping styles and distress.</p> </sec> <sec id="pon3125-sec-0026" sec-type="section"> <title>Method</title> <p>Before disclosure of <italic>BRCA</italic>1/2 test results for hereditary breast/ovarian cancer (T1), questionnaires were filled in by 467 cancer‐patients. Another questionnaire (T2) was filled in after disclosure of pathogenic mutation results (<italic>n</italic> = 30), uninformative results (<italic>n</italic> = 202) or unclassified‐variants (<italic>n</italic> = 16).</p> </sec> <sec id="pon3125-sec-0027" sec-type="section"> <title>Results</title> <p>Before and after DNA test result disclosure, overall 58–94% of all counselees experienced unfulfilled NfC regarding the DNA test result, heredity and cancer. Compared with T1, the communication of pathogenic mutations (T2) caused more fulfillment of the NfC about the DNA test result, but less about cancer and heredity (<italic>p</italic> < .01). Compared with T1, unclassified variants (T2) did not significantly change the extent of fulfillment of all counselees' needs for certainty (NfC > PC). Compared with T1, uninformative results (T2) caused more fulfillments of all needs than before disclosure (<italic>p</italic> < 0.01). Counselees differentiated NfC and PC between the domains of DNA‐test result, heredity and cancer ( <italic>p</italic> < 0.01). The unfulfilled needs for certainty (NfC‐PC) were uncorrelated with cognitive understanding of the DNA test result.</p> </sec> <sec id="pon3125-sec-0028" sec-type="section"> <title>Conclusion</title> <p>The counselees' NfC needs more attention in research and practice, for example, when the potential uncertainties of testing are discussed. The counselees' NfC may be assessed and used in tailored, mutual communication of DNA test results. Copyright © 2012 John Wiley & Sons, Ltd.</p> </sec> </abstract>