Table 2.
Mean scores (+SD) of the raw data for knowledge, internalized stigma, and perceived control, as well as numbers and percentages of participants reporting ‘accurate’ RRs, overestimated RRs, and underestimated RRs by group (GC, EB, WL) at each time point (T1, T2, T3).
| T1 | T2 | T3 | |
|---|---|---|---|
| Knowledgea | Mean Scores (SD) | ||
|
| |||
| GC | 2.8 (1.9) | 4.6 (2.1) | 4.8 (1.2) |
| EB | 3.2 (1.9) | 4.1 (2.0) | 4.4 (1.8) |
| WL | 3.3 (1.6) | n/a | 3.4 (1.8) |
|
| |||
| Risk Perception | Number (Percentage) | ||
|
| |||
| GC – Accurate | 12 (50.0) | 20 (80.0) | 17 (85.0) |
| EB – Accurate | 3 (8.6)b | 17 (48.6) | 8 (29.6) |
| WL – Accurate | 5 (21.7) | n/a | 7 (31.8) |
| GC – Overestimate | 11 (45.8) | 3 (12.0) | 1 (5.0) |
| EB – Overestimate | 30 (85.7) | 14 (40.0) | 14 (51.9) |
| WL – Overestimate | 16 (69.6) | n/a | 14 (63.6) |
| GC – Underestimate | 1 (4.2) | 2 (8.0) | 2 (10.0) |
| EB – Underestimate | 2 (5.7) | 4 (11.4) | 5 (18.5) |
| WL – Underestimate | 2 (8.7) | n/a | 1 (4.5) |
|
| |||
| Internalized Stigmac | Mean Scores (SD) | ||
|
| |||
| GC | 59.2 (14.8) | 57.6 (15.4) | 56.8 (14.3) |
| EB | 60.3 (15.2) | 58.7 (14.8) | 61.4 (15.9) |
| WL | 61.2 (17.5) | n/a | 62.7 (17.8) |
|
| |||
| Perceived Control | Mean Scores (SD) | ||
|
| |||
| Consequences subscaled | |||
| GC | 37.5 (6.9) | 34.6 (7.8) | 34.6 (7.8) |
| EB | 39.8 (7.9) | 39.7 (10.2) | 40.4 (5.9) |
| WL | 39.4 (7.9) | n/a | 39.1 (8.6) |
| Personal control subscalee | |||
| GC | 16.9 (3.4) | 16.3 (3.2) | 17.3 (2.9) |
| EB | 16.4 (2.5) | 17.1 (2.9) | 16.6 (3.3) |
| WL | 16.5 (2.9) | n/a | 17.2 (2.0) |
| Treatment control subscalee | |||
| GC | 19.0 (3.5) | 19.9 (3.5) | 19.6 (3.1) |
| EB | 18.6 (3.5) | 19.9 (3.5) | 18.2 (4.2) |
| WL | 19.0 (3.4) | n/a | 19.2 (3.5) |
| Illness coherence subscalee | |||
| GC | 10.3 (3.2) | 9.4 (3.0) | 9.3 (3.1) |
| EB | 10.1 (3.1) | 9.6 (3.2) | 9.5 (3.5) |
| WL | 11.3 (4.0) | n/a | 10.3 (3.9) |
| Emotional representation subscaled | |||
| GC | 29.1 (7.8) | 28.3 (8.2) | 27.5 (8.0) |
| EB | 29.2 (8.1) | 28.1 (8.0) | 31.4 (6.1) |
| WL | 29.0 (7.6) | n/a | 28.8 (8.4) |
High knowledge scores reflect a greater number of questions answered correctly.
“Accurate” responses for each group were as follows: for the GC group, if they fell within the range provided in the GC session; for the EB group, if they fell within the range quoted in the booklet; for the WL group, if they fell within the range determined by consensus of the three BC/EGCs (CH, AI, JA) based on family history analysis. It was more difficult to achieve an ‘accurate’ rating at baseline for the EB group because the risk range (10–15%) was typically narrower than for those that were personalized to the family history (for the GC and WL groups).
High scores reflect high levels of internalized stigma.
High scores on the consequences and emotional representation subscales represent strongly held beliefs about the negative consequences of the illness, and a strong negative emotional response to the illness, respectively.
High scores on the personal control, treatment control and illness coherence subscales represent positive beliefs about the controllability of the illness and a personal understanding of the condition.