Prognostic Factors for Distress After Genetic Testing for Hereditary Cancer

Jan S. Voorwinden*, Jan P C Jaspers

*Corresponding author for this work

    Research output: Contribution to journalArticleAcademicpeer-review

    19 Citations (Scopus)
    263 Downloads (Pure)


    The psychological impact of an unfavorable genetic test result for counselees at risk for hereditary cancer seems to be limited: only 10-20 % of counselees have psychological problems after testing positive for a known familial mutation. The objective of this study was to find prognostic factors that can predict which counselees are most likely to develop psychological problems after presymptomatic genetic testing. Counselees with a 50 % risk of BRCA1/2 or Lynch syndrome completed questionnaires at three time-points: after receiving a written invitation for a genetic counseling intake (T1), 2-3 days after receiving their DNA test result (T2), and 4-6 weeks later (T3). The psychological impact of the genetic test result was examined shortly and 4-6 weeks after learning their test result. Subsequently, the influence of various potentially prognostic factors on psychological impact were examined in the whole group. Data from 165 counselees were analyzed. Counselees with an unfavorable outcome did not have more emotional distress, but showed significantly more cancer worries 4-6 weeks after learning their test result. Prognostic factors for cancer worries after genetic testing were pre-existing cancer worries, being single, a high risk perception of getting cancer, and an unfavorable test result. Emotional distress was best predicted by pre-existing cancer worries and pre-existing emotional distress. The psychological impact of an unfavorable genetic test result appears considerable if it is measured as "worries about cancer." Genetic counselors should provide additional guidance to counselees with many cancer worries, emotional distress, a high risk perception or a weak social network.

    Original languageEnglish
    Pages (from-to)495-503
    Number of pages9
    JournalJournal of genetic counseling
    Issue number3
    Early online date16-Oct-2015
    Publication statusPublished - Jun-2016


    • Genetic testing
    • Hereditary cancer
    • BRCA
    • Lynch syndrome
    • Distress
    • Cancer worry
    • Prognostic factors
    • RISK
    • BRCA1/2
    • WOMEN

    Cite this