Table 1.

Description of quantitative study measures and assessment time points.

Measure	Baseline (T0)	3-month follow-up (T1)	12-month follow-up (T2)
Demographic characteristics included age, sex, marital status, socio-economic status (SES) and accessibility/remoteness (ARIA) determined by postcode, educational level, country of birth, language spoken at home, number of biological children, smoking status, alcohol consumption, occupation.	X
Clinical characteristics included personal cancer history (diagnosis and date of diagnosis), family history of cancer, prior attendance at a family cancer clinic, prior experience with genetic testing, and treatment history.	X
Perceived importance of genome sequencing was measured using five items adapted from Hay et al. (2012), e.g., How important is it to you to learn about gene variants that may increase your chances of getting (another) cancer? Responses were scored on a Likert-scale from “not at all important” (1) to “very important” (5). Scores were averaged.Cronbach's alpha = 0.59	X
Knowledge of genomics was measured using seven multiple choice study-developed questions assessing knowledge of the purpose of genome sequencing, likely frequency of informative results, cancers in which informative results are likely to be found, and utility of genome sequencing results. The number of correct responses was summed, with “Don't know” responses scored as incorrect, and an overall score (0–100%) calculated from the seven items.	X
Perceived ability to cope with results was measured with four Likert-scale items adapted from Rosenberg et al. (2013), assessing perceived ability to cope with: a germline cancer gene variant result; a variant of uncertain significance; no cancer gene variants being found, and communicating germline results. E.g., I am confident I would be able to cope if a gene variant indicating that I and my family are at risk of some cancer, was found. Response options ranged from “strongly disagree” (1) to “strongly agree” (5). Scores were averaged across the four items, with higher scores indicating greater perceived ability to cope with results.Cronbach's alpha = 0.87	X
Intention to change behavior if a gene variant indicating cancer risk found was measured with study developed Likert-scale items, e.g., If I knew I had inherited genes which increase my risk of cancer, I would be more careful with my diet. Response options ranged from “strongly disagree” (1) to “strongly agree” (5). Scores were averaged across the items, with higher scores indicating stronger intention to change behavior.Cronbach's alpha = 0.89	X
Fear of cancer recurrence. The Concerns About Recurrence Questionnaire (CAR-Q) (Thewes et al., 2015) measured fear of cancer recurrence. Responses ranged from “none of the time/not at all” (0) to “all of the time/a great deal” (10). Scores were summed and averaged across the three questions, with higher scores indicating greater fear of cancer recurrence.Cronbach's alpha = 0.93	X	X	X
Perceived susceptibility of (another) cancer was measured with three items adapted from Kasparian et al. (2009). Participants self-rated their chances of developing another cancer from “much lower” (0) to “much higher” (4), and on a visual analogue scale from “no chance” (0%) to “will definitely” (100%). Participants also self-rated their chances of having a gene variant that increased their risk of cancer from “much lower” (0) to “much higher” (4). Likert-scale scores were multiplied by 25, then scores for all three items were averaged. Higher scores indicated greater perceived susceptibility of cancer.Cronbach's alpha = 0.66	X	X	X
Attitude towards uncertainty: The seven-item Attitude towards Uncertainty Scale (Braithwaite et al., 2002) measured attitude towards uncertainty in genome sequencing. Participants rated items on a Likert-scale from “strongly disagree” (1) to “strongly agree” (5). Scores were averaged across the items, with higher score indicating a negative attitude towards uncertainty.Cronbach's alpha = 0.87	X
Satisfaction with decision to have genome sequencing. The six-item Satisfaction with Decision (SWD) scale (Holmes-Rovner et al., 1996) measured satisfaction with decision to have genome sequencing. Response options range from “strongly disagree” (1) to “strongly agree” (5). Scores were summed, with higher scores indicating greater satisfaction with decision.Cronbach's alpha = 0.92	X	X	X
Genome sequencing related distress, positive experience and uncertainty. The adapted Multidimensional Impact of Cancer Risk Assessment (MICRA) scale (Cella et al., 2002) measured distress, uncertainty and positive experiences specifically in the context of genome sequencing. Response options ranged from “never” (0) to “often” (5). The positive experience items were reverse coded, and item scores summed; thus, higher scores indicate greater distress, uncertainty, or positive experiences.
Cronbach's alpha (distress) = 0.92 Cronbach's alpha (positive experience) = 0.88 Cronbach's alpha (family support) = 0.92 Cronbach's alpha (uncertainty) = 0.87		X	X
Genome sequencing specific anxiety. Impact of Events Scale (IES) (Horowitz et al., 1979; Thewes et al., 2001) measured genome sequencing specific anxiety. The scale measures the frequency of intrusions (unbidden thoughts, images, feelings) and avoidance (blunted sensation, behavioral inhibition, emotional numbness) Responses ranged from “not at all” (0) to “often” (5). A total score was obtained by summing the 15 Likert-scale items, with a higher score indicating greater anxiety about genome sequencing.Cronbach's alpha = 0.91		X	X
Anxiety and depression. The 14 item Hospital Anxiety and Depression Scale (HADS) (Zigmond and Snaith, 1983) measured general anxiety and depression. A total scale score was obtained by summing each item (range 0–42), with a higher score indicating greater anxiety and depression.Cronbach's alpha = 0.91		X	X
Hope. The 12 item Herth Hope Index (HHI) (Herth, 1992) measures hope and sense of meaning across three subscales: temporality and future, positive readiness and expectancy, and inter-connectedness. Responses range from “strongly disagree” (1) to “strongly agree” (4). Item scores are summed, with higher scores indicating greater hope.Cronbach's alpha = 0.88		X	X