The HADS questionnaire is a 14-item scale comprised of seven questions for anxiety and seven questions for depression. Each item is scored from 0-3. The total scoring is as follows: 8-10 = Mild, 11-14 = Moderate, 15-21 = Severe. Scoring for anxiety and depression are to be completed separately. For both scales, a total score of less than 7 indicates non-cases. Total range is 0 (lowest anxiety) - 21 (most severe anxiety).

Participants who have completed the survey at each follow-up time.

The HADS questionnaire is a 14-item scale comprised of seven questions for anxiety and seven questions for depression. Each item is scored from 0-3. The total scoring is as follows: 8-10 = Mild, 11-14 = Moderate, 15-21 = Severe. Scoring for anxiety and depression are to be completed separately. For both scales, a total score of less than 7 indicates non-cases. Total range is 0 (lowest) - 21 (most severe).

Participants who have completed the survey at each follow-up time.

The GF12 subscale is made up of 12 items, six items that reflect healthy family functioning and the other six items reflecting unhealthy functioning. Scoring is on a 4-point scale (from 1 for strongly agree to 4 for strongly disagree) with the scale for the negatively worded items reversed. The total score is then divided by the number of items on the subscale giving a total score ranging from 1.0 (best functioning) to 4.0 (worse functioning)

Participants who have completed the survey at each follow-up time.

Healthy days are the positive complementary form of unhealthy days. Healthy days estimates the number of recent days when a person's physical and mental health was good (or better) and is calculated by subtracting the number of unhealthy days from 30 days.

Unhealthy days are an estimate of the overall number of days during the previous 30 days when the respondent felt that either his or her physical or mental health was not good. To obtain this estimate, responses to questions 2 and 3 are combined to calculate a summary index of overall unhealthy days, with a logical maximum of 30 unhealthy days. For example, a person who reports 4 physically unhealthy days and 2 mentally unhealthy days is assigned a value of 6 unhealthy days, and someone who reports 30 physically unhealthy days and 30 mentally unhealthy days is assigned the maximum of 30 unhealthy days. Here we report the number and % of participants who reported fair or poor HRQoL.

Collapse score 4-5 to 'Fair to Poor'

The Decision Regret Scale is made up of 5 items that address the notion of regret in a variety of ways. Scoring on a 4-point scale (from 1 for strongly agree to 4 for strongly disagree) with the scale for the negatively worded items. The total score is taken from the mean of the 5 items, and then converted to a 0-100 scale by subtracting 1 from each item then multiply by 25. A score of 0 means no regret; a score of 100 means high regret.

Participants who have completed the survey at each follow-up time.

Initiation of risk reduction behavior (yes/no) among children with familial gene variant. Not that this is among children of all ages (not just adolescents). Counts are of participants who initiated a risk reduction behavior. Data were collected via chart review for pre-selected risk reduction procedures specific to each genetic condition. Time in months from results disclosure date to date of risk reduction behavior was tracked.

Analysis only conducted for participants with a pathogenic/likely pathogenic variant in gene of interest (children who tested negative for a relevant genetic variant were not evaluated for initiation of risk reduction procedures). Children of all ages were included in the analysis.

The HADS questionnaire is a 14-item scale comprised of seven questions for anxiety and seven questions for depression. Each item is scored from 0-3. The total scoring is as follows: 8-10 = Mild, 11-14 = Moderate, 15-21 = Severe. Scoring for anxiety and depression are to be completed separately. For both scales, a total score of less than 7 indicates non-cases.Total range is 0 (lowest anxiety) - 21 (most severe anxiety).

The HADS questionnaire is a 14-item scale comprised of seven questions for anxiety and seven questions for depression. Each item is scored from 0-3. The total scoring is as follows: 8-10 = Mild, 11-14 = Moderate, 15-21 = Severe. Scoring for anxiety and depression are to be completed separately. For both scales, a total score of less than 7 indicates non-cases. Total range is 0 (lowest anxiety) - 21 (most severe anxiety).

The HADS questionnaire is a 14-item scale comprised of seven questions for anxiety and seven questions for depression. Each item is scored from 0-3. The total scoring is as follows: 8-10 = Mild, 11-14 = Moderate, 15-21 = Severe. Scoring for anxiety and depression are to be completed separately. For both scales, a total score of less than 7 indicates non-cases. Total range is 0 (lowest anxiety) - 21 (most severe anxiety).

The HADS questionnaire is a 14-item scale comprised of seven questions for anxiety and seven questions for depression. Each item is scored from 0-3. The total scoring is as follows: 8-10 = Mild, 11-14 = Moderate, 15-21 = Severe. Scoring for anxiety and depression are to be completed separately. For both scales, a total score of less than 7 indicates non-cases. Total range is 0 (lowest) - 21 (most severe).

Participants who have completed the survey at each follow-up time.

The HADS questionnaire is a 14-item scale comprised of seven questions for anxiety and seven questions for depression. Each item is scored from 0-3. The total scoring is as follows: 8-10 = Mild, 11-14 = Moderate, 15-21 = Severe. Scoring for anxiety and depression are to be completed separately. For both scales, a total score of less than 7 indicates non-cases. Total range is 0 (lowest) - 21 (most severe).

Participants who have completed the survey at each follow-up time.

The HADS questionnaire is a 14-item scale comprised of seven questions for anxiety and seven questions for depression. Each item is scored from 0-3. The total scoring is as follows: 8-10 = Mild, 11-14 = Moderate, 15-21 = Severe. Scoring for anxiety and depression are to be completed separately. For both scales, a total score of less than 7 indicates non-cases. Total range is 0 (lowest) - 21 (most severe).

Participants who have completed the survey at each follow-up time.

The GF12 subscale is made up of 12 items, six items that reflect healthy family functioning and the other six items reflecting unhealthy functioning. Scoring is on a 4-point scale (from 1 for strongly agree to 4 for strongly disagree) with the scale for the negatively worded items reversed. The total score is then divided by the number of items on the subscale giving a total score ranging from 1.0 (best functioning) to 4.0 (worse functioning)

Participants who have completed the survey at each follow-up time.

The GF12 subscale is made up of 12 items, six items that reflect healthy family functioning and the other six items reflecting unhealthy functioning. Scoring is on a 4-point scale (from 1 for strongly agree to 4 for strongly disagree) with the scale for the negatively worded items reversed. The total score is then divided by the number of items on the subscale giving a total score ranging from 1.0 (best functioning) to 4.0 (worse functioning)

Participants who have completed the survey at each follow-up time.

The GF12 subscale is made up of 12 items, six items that reflect healthy family functioning and the other six items reflecting unhealthy functioning. Scoring is on a 4-point scale (from 1 for strongly agree to 4 for strongly disagree) with the scale for the negatively worded items reversed. The total score is then divided by the number of items on the subscale giving a total score ranging from 1.0 (best functioning) to 4.0 (worse functioning)

Participants who have completed the survey at each follow-up time.

Healthy days are the positive complementary form of unhealthy days. Healthy days estimates the number of recent days when a person's physical and mental health was good (or better) and is calculated by subtracting the number of unhealthy days from 30 days.

Unhealthy days are an estimate of the overall number of days during the previous 30 days when the respondent felt that either his or her physical or mental health was not good. To obtain this estimate, responses to questions 2 and 3 are combined to calculate a summary index of overall unhealthy days, with a logical maximum of 30 unhealthy days. For example, a person who reports 4 physically unhealthy days and 2 mentally unhealthy days is assigned a value of 6 unhealthy days, and someone who reports 30 physically unhealthy days and 30 mentally unhealthy days is assigned the maximum of 30 unhealthy days. Here we report the number and % of participants who reported fair or poor HRQoL.

Collapse score 4-5 to report 'Fair to Poor'

Healthy days are the positive complementary form of unhealthy days. Healthy days estimates the number of recent days when a person's physical and mental health was good (or better) and is calculated by subtracting the number of unhealthy days from 30 days.

Unhealthy days are an estimate of the overall number of days during the previous 30 days when the respondent felt that either his or her physical or mental health was not good. To obtain this estimate, responses to questions 2 and 3 are combined to calculate a summary index of overall unhealthy days, with a logical maximum of 30 unhealthy days. For example, a person who reports 4 physically unhealthy days and 2 mentally unhealthy days is assigned a value of 6 unhealthy days, and someone who reports 30 physically unhealthy days and 30 mentally unhealthy days is assigned the maximum of 30 unhealthy days. Here we report the number and % of participants who reported fair or poor HRQoL.

Collapse score 4-5 to 'Fair to Poor'

Healthy days are the positive complementary form of unhealthy days. Healthy days estimates the number of recent days when a person's physical and mental health was good (or better) and is calculated by subtracting the number of unhealthy days from 30 days.

Unhealthy days are an estimate of the overall number of days during the previous 30 days when the respondent felt that either his or her physical or mental health was not good. To obtain this estimate, responses to questions 2 and 3 are combined to calculate a summary index of overall unhealthy days, with a logical maximum of 30 unhealthy days. For example, a person who reports 4 physically unhealthy days and 2 mentally unhealthy days is assigned a value of 6 unhealthy days, and someone who reports 30 physically unhealthy days and 30 mentally unhealthy days is assigned the maximum of 30 unhealthy days. Here we report the number and % of participants who reported fair or poor HRQoL.

Collapse score 4-5 to 'Fair to Poor'

The Decision Regret Scale is made up of 5 items that address the notion of regret in a variety of ways. Scoring on a 4-point scale (from 1 for strongly agree to 4 for strongly disagree) with the scale for the negatively worded items. The total score is taken from the mean of the 5 items, and then converted to a 0-100 scale by subtracting 1 from each item then multiply by 25. A score of 0 means no regret; a score of 100 means high regret.

Participants who have completed the survey at each follow-up time.

Anxiety subscale of the brief (25-item) version of Revised Children's Anxiety and Depression Scale. Items are scored from 0 (never) to 3 (always) and cumulative scores are converted to T scores per measure guidelines based on participants' school grade and sex. RCADS raw scores were converted to age- and sex-normed T-scores, where a T-score of 48 represents the population mean and the standard deviation is 14 at baseline. T score of greater than or equal to 70 exceeds the clinical threshold (i.e., higher T score = higher anxiety).

Anxiety subscale of the brief (25-item) version of Revised Children's Anxiety and Depression Scale. Items are scored from 0 (never) to 3 (always) and cumulative scores are converted to T scores per measure guidelines based on participants' school grade and sex. RCADS raw scores were converted to age- and sex-normed T-scores, where a T-score of 48 represents the population mean and the standard deviation is 14 at baseline. T score of greater than or equal to 70 exceeds the clinical threshold (i.e., higher T score = higher anxiety).

Anxiety subscale of the brief (25-item) version of Revised Children's Anxiety and Depression Scale. Items are scored from 0 (never) to 3 (always) and cumulative scores are converted to T scores per measure guidelines based on participants' school grade and sex. RCADS raw scores were converted to age- and sex-normed T-scores, where a T-score of 48 represents the population mean and the standard deviation is 14 at baseline. T score of greater than or equal to 70 exceeds the clinical threshold (i.e., higher T score = higher anxiety).

Anxiety subscale of the brief (25-item) version of Revised Children's Anxiety and Depression Scale. Items are scored from 0 (never) to 3 (always) and cumulative scores are converted to T scores per measure guidelines based on participants' school grade and sex. RCADS raw scores were converted to age- and sex-normed T-scores, where a T-score of 48 represents the population mean and the standard deviation is 14 at baseline. T score of greater than or equal to 70 exceeds the clinical threshold (i.e., higher T score = higher anxiety).

Depression subscale of the brief (25-item) version of Revised Children's Anxiety and Depression Scale. Items are scored from 0 (never) to 3 (always) and cumulative scores are converted to T scores per measure guidelines based on participants' school grade and sex. RCADS raw scores were converted to age- and sex-normed T-scores, where a T-score of 48 represents the population mean and the standard deviation is 14 at baseline. T score of greater than or equal to 70 exceeds the clinical threshold (i.e., higher T score = higher depression).

Depression subscale of the brief (25-item) version of Revised Children's Anxiety and Depression Scale. Items are scored from 0 (never) to 3 (always) and cumulative scores are converted to T scores per measure guidelines based on participants' school grade and sex. RCADS raw scores were converted to age- and sex-normed T-scores, where a T-score of 48 represents the population mean and the standard deviation is 14 at baseline. T score of greater than or equal to 70 exceeds the clinical threshold (i.e., higher T score = higher depression).

Depression subscale of the brief (25-item) version of Revised Children's Anxiety and Depression Scale. Items are scored from 0 (never) to 3 (always) and cumulative scores are converted to T scores per measure guidelines based on participants' school grade and sex. RCADS raw scores were converted to age- and sex-normed T-scores, where a T-score of 48 represents the population mean and the standard deviation is 14 at baseline. T score of greater than or equal to 70 exceeds the clinical threshold (i.e., higher T score = higher depression).

Depression subscale of the brief (25-item) version of Revised Children's Anxiety and Depression Scale. Items are scored from 0 (never) to 3 (always) and cumulative scores are converted to T scores per measure guidelines based on participants' school grade and sex. RCADS raw scores were converted to age- and sex-normed T-scores, where a T-score of 48 represents the population mean and the standard deviation is 14 at baseline. T score of greater than or equal to 70 exceeds the clinical threshold (i.e., higher T score = higher depression).

The GF12 subscale is made up of 12 items, six items that reflect healthy family functioning and the other six items reflecting unhealthy functioning. Scoring is on a 4-point scale (from 1 for strongly agree to 4 for strongly disagree) with the scale for the negatively worded items reversed. The total score is then divided by the number of items on the subscale giving a total score ranging from 1.0 (best functioning) to 4.0 (worse functioning)

The GF12 subscale is made up of 12 items, six items that reflect healthy family functioning and the other six items reflecting unhealthy functioning. Scoring is on a 4-point scale (from 1 for strongly agree to 4 for strongly disagree) with the scale for the negatively worded items reversed. The total score is then divided by the number of items on the subscale giving a total score ranging from 1.0 (best functioning) to 4.0 (worse functioning)

The GF12 subscale is made up of 12 items, six items that reflect healthy family functioning and the other six items reflecting unhealthy functioning. Scoring is on a 4-point scale (from 1 for strongly agree to 4 for strongly disagree) with the scale for the negatively worded items reversed. The total score is then divided by the number of items on the subscale giving a total score ranging from 1.0 (best functioning) to 4.0 (worse functioning)

The GF12 subscale is made up of 12 items, six items that reflect healthy family functioning and the other six items reflecting unhealthy functioning. Scoring is on a 4-point scale (from 1 for strongly agree to 4 for strongly disagree) with the scale for the negatively worded items reversed. The total score is then divided by the number of items on the subscale giving a total score ranging from 1.0 (best functioning) to 4.0 (worse functioning)

Healthy days are the positive complementary form of unhealthy days. Healthy days estimates the number of recent days when a person's physical and mental health was good (or better) and is calculated by subtracting the number of unhealthy days from 30 days.

Unhealthy days are an estimate of the overall number of days during the previous 30 days when the respondent felt that either his or her physical or mental health was not good. To obtain this estimate, responses to questions 2 and 3 are combined to calculate a summary index of overall unhealthy days, with a logical maximum of 30 unhealthy days. For example, a person who reports 4 physically unhealthy days and 2 mentally unhealthy days is assigned a value of 6 unhealthy days, and someone who reports 30 physically unhealthy days and 30 mentally unhealthy days is assigned the maximum of 30 unhealthy days. Here we report the number and % of participants who reported fair or poor HRQoL.

Healthy days are the positive complementary form of unhealthy days. Healthy days estimates the number of recent days when a person's physical and mental health was good (or better) and is calculated by subtracting the number of unhealthy days from 30 days.

Unhealthy days are an estimate of the overall number of days during the previous 30 days when the respondent felt that either his or her physical or mental health was not good. To obtain this estimate, responses to questions 2 and 3 are combined to calculate a summary index of overall unhealthy days, with a logical maximum of 30 unhealthy days. For example, a person who reports 4 physically unhealthy days and 2 mentally unhealthy days is assigned a value of 6 unhealthy days, and someone who reports 30 physically unhealthy days and 30 mentally unhealthy days is assigned the maximum of 30 unhealthy days. Here we report the number and % of participants who reported fair or poor HRQoL.

Healthy days are the positive complementary form of unhealthy days. Healthy days estimates the number of recent days when a person's physical and mental health was good (or better) and is calculated by subtracting the number of unhealthy days from 30 days.

Unhealthy days are an estimate of the overall number of days during the previous 30 days when the respondent felt that either his or her physical or mental health was not good. To obtain this estimate, responses to questions 2 and 3 are combined to calculate a summary index of overall unhealthy days, with a logical maximum of 30 unhealthy days. For example, a person who reports 4 physically unhealthy days and 2 mentally unhealthy days is assigned a value of 6 unhealthy days, and someone who reports 30 physically unhealthy days and 30 mentally unhealthy days is assigned the maximum of 30 unhealthy days. Here we report the number and % of participants who reported fair or poor HRQoL.

Healthy days are the positive complementary form of unhealthy days. Healthy days estimates the number of recent days when a person's physical and mental health was good (or better) and is calculated by subtracting the number of unhealthy days from 30 days.

Unhealthy days are an estimate of the overall number of days during the previous 30 days when the respondent felt that either his or her physical or mental health was not good. To obtain this estimate, responses to questions 2 and 3 are combined to calculate a summary index of overall unhealthy days, with a logical maximum of 30 unhealthy days. For example, a person who reports 4 physically unhealthy days and 2 mentally unhealthy days is assigned a value of 6 unhealthy days, and someone who reports 30 physically unhealthy days and 30 mentally unhealthy days is assigned the maximum of 30 unhealthy days. Here we report the number and % of participants who reported fair or poor HRQoL.