Outcome
Type |
Measure |
Description |
Time frame |
Safety issue |
Primary |
Uptake of disclosure invitation |
The primary outcome is: relative proportions of individuals who, when offered genetic results of a deceased family member who participated in a biobank study, will decide to learn those results. Uptake will be a binary outcome (Yes/No). We will enumerate the number of invited participants who choose to learn results and who choose not to learn results. |
6 months |
|
Secondary |
Frequency and duration of physical activity |
We will measure and compare changes between baseline and 6 months following genetic test disclosure: number of self-reported days per week and exercise duration(minutes). |
6 months |
|
Secondary |
Frequency and duration of alcohol use |
We will measure and compare changes between baseline and 6 months following genetic test disclosure: number of drinks containing alcohol taken per week over previous six months; frequency drinking 6 or more drinks in one occasion in past 6 months (Never; Less than monthly; Monthly; 2 to 3 times per week; 4 or more times per week) |
6 months |
|
Secondary |
Current cigarette smoking status |
We will measure and compare changes between baseline and 6 months following genetic test disclosure: Current cigarette smoker (Yes/No) |
6 months |
|
Secondary |
Quality and amount of sleep |
We will measure and compare changes between baseline and 6 months following genetic test disclosure: Quality of sleep (Very good; Fairly good; Fairly bad; Very bad); Number of hours of sleep in a 24 hour period (hours and minutes) |
6 months |
|
Secondary |
Frequency of fruit and vegetable consumption |
We will measure and compare changes between baseline and 6 months following genetic test disclosure: Number of servings eaten in a typical day (None; 1 or less; 2; 3; 4; 5 or more) |
6 months |
|
Secondary |
Frequency of red meat consumption |
We will measure and compare changes between baseline and 6 months following genetic test disclosure: Number of times consumed per typical week (0; 1 to 5; 6 to 10; 11 to 15; 16 to 20; 21 or more). |
6 months |
|
Secondary |
Uptake of genetic testing |
The relative proportion of individuals who request and obtain genetic testing on their own by 6 months |
6 months |
|
Secondary |
Quality of life |
Changes in self-reported quality of life on a scale of 0(a bad as it can be) to 10 (as good as it can be) |
6 months |
|
Secondary |
Perceived cancer risk/worry |
Changes in self-reported worry of developing cancer on a scale of 1 (not at all or rarely to 4 (almost all the time) |
6 months |
|
Secondary |
Decision regret |
Self-reported rating of regret to learn/not learn their relative's genetic research result using a 5-item scale rating (Strongly agree to Strongly disagree). |
6 months |
|