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Psychosocial Issues in Hereditary Colon Cancer Syndromes

    Table 13. Summary of Studies Evaluating Interest in or Intention to Have Genetic Counseling and Testing for Familial Colorectal Cancer (CRC)a

    Study PopulationNbInterest or Intention in GC or GTc
    FDR = first-degree relative; GC = genetic counseling; GT = genetic testing; HCCR = hereditary colon cancer registry.
    a All studies used a cross-sectional design, with the exception of one study, which used focus groups.[14]All studies were conducted in the United States, with the exception of one Canadian study.[3]
    b Indicates number of participants older than 18 y, unless otherwise specified.
    c Type of genetic test not specified.
    d Random Digit Dial Survey with general population samples.
    e Unaffected = no previous diagnosis of CRC.
    General population (Utah), RDDSd[1]40147% very interested in GT; 35% somewhat interested in GT
    General population (Utah), RDDS[2]38347% very interested in GT; 37% somewhat interested in GT
    Unaffectede FDRs of CRC patients from tumor registry[8]42646% GC intention; 26% definite GT intention
    Unaffected FDRs of CRC patients from HCCR[7]1,37377% definite GT intention if free; 15% probable
    CRC patients from an oncology center and community[12]9852% definite GT interest; 20% probable
    Unaffected FDRs of CRC patients from an oncology center and community[13]9584% GT interest
    Focus groups of CRC patients and unaffected FDRs from an oncology center and community[14]28 CRCsCRCs: 96% GT interest before group; 89% after group
    33 FDRsFDRs: 82% before group; 42% after group
    General population (Ontario, Canada), RDDS[3]50181% interested in GT if test is 80% predictive; 77% interested if test is 90% accurate; 67% interested if 1% of population inherits a familial CRC gene mutation
    General population (Vermont, New Hampshire, Maine), RDDS[4]1,836GT intention in next 6 months: 32% probably/definitely; 19% possibly
    GT intention in next month: 19% probably/definitely; 12% possibly

    Table 14. Summary of Studies Evaluating Interest in or Intention to Have Genetic Counseling and Testing for Lynch Syndrome (LS)a

    Study PopulationNbInterest or Intention in GC or GTc
    CRC = colorectal cancer; FDR = first-degree relative; GC = genetic counseling; GT = genetic testing; HCCR = hereditary colon cancer registry.
    a All studies used a cross-sectional design, with the exception of one study, which used focus groups.[9]All studies were conducted in the United States, with the exception of one German study.[15]
    b Indicates number of participants older than 18 y, unless otherwise specified.
    c Type of genetic test not specified.
    d Unaffected = no previous diagnosis of CRC.
    Unaffectedd FDRs of CRC patients undergoing treatment[11]4551% definite GT intention; 31% probable
    CRC patients and unaffected individuals undergoing LS GC[15]31 CRCs; 34 unaffectedPrecounseling: 100% (29). GT intention among CRCs who were aware of GT. 92% (30) GT intention among unaffected who were aware of GT
    Postcounseling: no one decided against testing, but 5 unaffected (18%); 1 CRC undecided
    CRC patients, unaffected FDRs, and age/gender-matched controls recruited from HCCR and driver's license/Medicare records[9]105If relative is a carrier: GT intention for 67% of CRCs; 75% of FDRs; 60% of controls
    If insurance covers cost: GT intention for 17% of CRCs; 75% of FDRs; 40% of controls
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