Table 1.
Survey measures
| Measure | Purpose | Scoring | Interpretation |
|---|---|---|---|
| Multidimensional Measure of Informed Consent [26] | Measures informed decision-making | Scores from three subscales, knowledge, attitudes and uptake, combined. Uptake was 100% for this sample as all women received BRCA1/2 testing. | Informed choice = good knowledge + positive attitude + uptake of test OR good knowledge + negative attitude + no test. Remaining combinations = uninformed. |
| Knowledge | Assesses knowledge of hereditary breast and ovarian cancer syndromes.a | Seven multiple choice questions with each correct answer scoring 1 point. Number of correct scores summed (range 0–7). | Cut off for good knowledge was ≥ 5 points. Poor knowledge was considered < 5. |
| Attitude | Measures attitude towards a topic. Participants responded to the statement: “For me, having genetic testing to determine my BRCA1/2 mutation status was…” | 4 statements dichotomised as positive or negative (e.g. beneficial/harmful). Participants responded to each using a 7 point Likert scale. Scores summed (range 4–28) and average calculated. | Lower scores indicated most positive attitudes. Positive attitude was considered a score of ≤ 16. |
| Decision Regret Scale [27] | Measures regret regarding a decision. Participants responded to the statement: “Please think about the decision you made about whether or not to have BRCA1/2 testing.” | 5 items with response options on 5 point Likert scales (strongly agree = 1; strongly disagree = 5). Items 2 and 5 reverse coded. Raw scores were converted to a score out of 100 by subtracting 1 and multiplying by 25. A final score was obtained by summing and averaging the 5 converted scores. | Higher scores indicating greater regret (where 0 = no regret at all). |
| Impact of Events Scale [28] | Measures cancer-specific psychological distress. | Participants asked to rate the frequency of intrusive (8 items) and avoidant (7 items) thoughts using a 4 point Likert scale (not at all = 1; often = 4). Subscales summed for total stress score (range 0–60). | Higher scores indicating more distress; 0–8 = subclinical, range, 9–25 = mild range, 26–43 = moderate range, 44 + = severe range |
| Multidimensional Impact of Cancer Risk Assessment [24] | Measures the psychological impact of receiving genetic test results. | Participants asked to indicate frequency of 6 negative and 4 positive internal eventsb using 4 point response options (not at all = 1; often = 4). Total score and subscale scores obtained. | Higher scores suggest greater distress (range 0–24) and greater positive experiences (range 0–16). |
| Measure adapted from Elliott et al. [29] | Assesses satisfaction with the competency, directiveness and respectfulness of the genetic counsellor. | 12-item measure when participants responded either; disagree, neutral, agree and not applicable. Items 3, 7, 9 and 12 were reverse worded. Percentages calculated. | Skewed distribution of percentages towards ‘agree’ or ‘disagree’ indicate stronger feelings towards an item, |
| Genetic Counselling Satisfaction Scale [30] | Measures satisfaction with the genetic counsellor interaction.c | 6 items relating to satisfaction with the genetic counsellor. Participants asked response using 5 point Likert scales (strongly disagree = 1; strongly agree = 5). Score for each item summed to a total score (range 0–30). | High scores indicated greater satisfaction. |
aAdapted from Wang [31] Ten of the original 17 questions were removed due to lack of relevance (e.g., questions regarding risk management strategies and those only referring to breast cancer) with the remaining 7 questions modified, where necessary, to suit an Australian context
bA third subscale, uncertainty, was removed from this measure as it related primarily to risk management strategies and concerns not relevant to end-of-life patients
cAdditional questions adapted from an existing genetic services evaluation study used to indirectly assess satisfaction by eliciting participants’ perspectives about specific components of the TGC experience (e.g., participants were asked if they felt that they had sufficient time to make a decision regarding genetic testing) [32]