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. Author manuscript; available in PMC: 2020 Nov 1.
Published in final edited form as: West J Nurs Res. 2018 Dec 12;41(11):1576–1601. doi: 10.1177/0193945918817039

Table 2.

Categorical Demographic & Diagnostic Characteristics of Participants & Affected Children of Proxy Probands

Participant Characteristic (53 adult participants) n (%)
Gender n = 53
    Male 19 (36)
    Female 34 (64)
Highest Education Completed n = 48
    Less than high school 1 (2)
    High school or GED 9 (19)
    Some college 6 (13)
    2-year degree 14 (29)
    4-year degree 12 (25)
    Master’s degree 6 (13)
Race/ Ethnicity n = 53
    Hispanic White 2 (4)
    Non-Hispanic White 51 (96)

Disease Characteristics (48 adult probands and 5 affected children of the proxy probands) n (%)

Cardiac Diagnosis* n = 53
    Hypertrophic cardiomyopathy 30 (57)
    Long QT syndrome 23 (43)
Genetic Test Status* n = 53
    Positive 30 (57)
    Negative 1 (2)
    Variant of uncertain significance 1 (2)
    Currently awaiting genetic test results 5 (9)
    No genetic testing done 14 (27)
    Did not personally test, but identical twin tested positive 1 (2)
    Blood drawn but testing not completed because of billing discrepancy 1 (2)
*

indicates the sample included the characteristics of the affected child for the 5 proxy probands.