Table 2.
Mean scores for each item and domain. The mean score was based on averaging scored responses (strongly agree = 2, agree = 1, neither agree nor disagree = 0, disagree = −1, strongly disagree = −2, not applicable = 0). If any item in a domain was missing data, the entire domain was excluded when calculating a domain score
| I currently wish to know more about… | Strongly agree (%) | Agree (%) | Neither agree nor disagree (%) | Disagree (%) | Strongly disagree (%) | N/A (%) | Missing (%) | Mean score (SD) |
|---|---|---|---|---|---|---|---|---|
| Cancer domain | 406 (36.2) | 341 (30.4) | 157 (14.0) | 56 (5.0) | 30 (2.7) | 76 (6.8) | 56 (5.0) | 0.97 (0.93) |
| The type of cancer | 70 (37.4) | 41 (21.9) | 40 (21.4) | 13 (7) | 5 (2.7) | 10 (5.3) | 8 (4.3) | 0.88 (1.10) |
| The cause of the cancer | 74 (39.6) | 57 (30.5) | 21 (11.2) | 11 (5.9) | 4 (2.1) | 12 (6.4) | 8 (4.3) | 1.04 (1.02) |
| The physical effects of the cancer | 74 (39.6) | 63 (33.7) | 18 (9.6) | 7 (3.7) | 5 (2.7) | 11 (5.9) | 9 (4.8) | 1.09 (1.00) |
| The symptoms of the cancer | 63 (33.7) | 60 (32.1) | 29 (15.5) | 8 (4.3) | 5 (2.7) | 12 (6.4) | 10 (5.3) | 0.95 (1.01) |
| How to manage the symptoms of the cancer | 69 (36.9) | 62 (33.2) | 17 (9.1) | 7 (3.7) | 5 (2.7) | 16 (8.6) | 11 (5.9) | 0.95 (1.01) |
| Where to get more information about my cancer diagnosis | 56 (29.9) | 58 (31.0) | 32 (17.1) | 10 (5.3) | 6 (3.2) | 15 (8.0) | 10 (5.3) | 0.84 (1.05) |
| Prognosis domain | 288 (51.3) | 159 (28.3) | 37 (6.6) | 18 (3.2) | 10 (1.8) | 27 (4.8) | 22 (3.9) | 1.29 (0.89) |
| The chance that my cancer will come back in the future | 97 (51.9) | 51 (27.3) | 12 (6.4) | 6 (3.2) | 3 (1.6) | 11 (5.9) | 7 (3.7) | 1.29 (0.93) |
| How the cancer will affect my health in the future | 97 (51.9) | 55 (29.4) | 14 (7.5) | 5 (2.7) | 3 (1.6) | 6 (3.2) | 7 (3.7) | 1.32 (0.90) |
| The chances of my cancer spreading | 94 (50.3) | 53 (28.3) | 11 (5.9) | 7 (3.7) | 4 (2.1) | 10 (5.3) | 8 (4.3) | 1.26 (0.97) |
| Rehabilitation domain | 281 (37.6) | 224 (29.9) | 73 (9.8) | 8 (1.1) | 6 (0.8) | 93 (12.4) | 63 (8.4) | 1.11 (0.75) |
| Self-care or home care during recovery | 56 (29.9) | 51 (27.3) | 29 (16.0) | 3 (1.6) | 1 (0.5) | 27 (14.4) | 20 (10.7) | 0.95 (0.89) |
| My diet during recovery | 53 (28.3) | 64 (34.2) | 19 (10.1) | 2 (1.1) | 1 (0.5) | 32 (17.1) | 16 (8.6) | 0.97 (0.84) |
| Long-term side-effects of the cancer or its treatment | 89 (47.6) | 58 (31.0) | 10 (5.3) | 2 (1.1) | 2 (1.1) | 15 (8.0) | 11 (5.9) | 1.31 (0.84) |
| Preventing complications following treatment | 83 (44.4) | 51 (27.3) | 15 (8.0) | 1 (0.5) | 2 (1.1) | 19 (10.2) | 16 (8.6) | 1.24 (0.87) |
| Social/family domain | 144 (25.7) | 148 (26.4) | 90 (16.0) | 16 (2.9) | 6 (1.1) | 115 (20.5) | 42 (7.5) | 0.79 (0.74) |
| How my social life may be affected | 38 (20.3) | 49 (26.2) | 44 (23.5) | 7 (3.7) | 2 (1.1) | 31 (16.6) | 16 (8.6) | 0.67 (0.91) |
| The risk of disease for family members | 74 (39.6) | 54 (28.9) | 18 (9.6) | 4 (2.1) | 2 (1.1) | 23 (12.3) | 12 (6.4) | 1.11 (0.92) |
| How my diagnosis may affect my work life | 32 (17.1) | 45 (24.1) | 28 (15.0) | 5 (2.7) | 2 (1.1) | 61 (32.6) | 14 (7.5) | 0.58 (0.86) |
| Treatment domain | 651 (31.6) | 526 (25.6) | 173 (8.4) | 62 (3.0) | 21 (1.0) | 440 (21.4) | 184 (8.9) | 0.91(0.82) |
| Available treatment options | 68 (36.4) | 49 (26.2) | 12 (6.4) | 6 (3.2) | 2 (1.1) | 34 (18.2) | 16 (8.6) | 1.02 (0.96) |
| When treatment will start | 43 (23.0) | 43 (23.0) | 17 (9.1) | 4 (2.1) | 1 (0.5) | 59 (31.6) | 20 (10.7) | 0.74 (0.89) |
| Where treatment will take place | 39 (20.9) | 50 (26.7) | 16 (8.6) | 6 (3.2) | 2 (1.1) | 54 (28.9) | 20 (10.7) | 0.71 (0.91) |
| How long treatment will last | 56 (29.9) | 46 (24.6) | 14 (7.5) | 4 (2.1) | 1 (0.5) | 48 (25.7) | 18 (9.6) | 0.90 (0.92) |
| Tests and procedures involved in the treatment process | 61 (32.6) | 49 (26.2) | 13 (7.0) | 5 (2.7) | 2 (1.2) | 41 (21.9) | 16 (8.6) | 0.95 (0.95) |
| Reducing side-effects of treatment | 73 (39.0) | 48 (25.7) | 12 (6.4) | 3 (1.6) | 2 (1.1) | 34 (18.2) | 15 (8.0) | 1.09 (0.93) |
| How the treatment works | 58 (31.0) | 60 (32.1) | 15 (8.0) | 5 (2.7) | 2 (1.1) | 32 (17.1) | 15 (8.0) | 0.97 (0.91) |
| How successful treatment is | 80 (42.8) | 48 (25.7) | 7 (3.7) | 5 (2.7) | 1 (0.5) | 32 (17.1) | 14 (7.5) | 1.16 (0.91) |
| Entry into clinical trials | 48 (25.7) | 30 (16.0) | 38 (20.3) | 10 (5.3) | 2 (1.1) | 42 (22.5) | 17 (9.1) | 066 (0.99) |
| The purpose of the treatment | 63 (33.7) | 51 (27.3) | 15 (8.0) | 7 (3.7) | 2 (1.1) | 33 (17.6) | 16 (8.6) | 0.97 (0.96) |
| How experienced the staff treating me are | 62 (33.2) | 52 (27.8) | 14 (7.5) | 7 (3.7) | 4 (2.1) | 31 (16.6) | 17 (9.1) | 0.94 (1.00) |
| Psychological/spiritual domain | 142 (19.0) | 160 (21.4) | 221 (29.5) | 36 (4.8) | 15 (2.0) | 107 (14.3) | 67 (9.0) | 0.54 (0.80) |
| Emotionally coping with cancer | 51 (27.3) | 48 (25.7) | 44 (23.5) | 6 (3.2) | 3 (1.6) | 21 (11.2) | 14 (7.5) | 0.80 (0.96) |
| Community counselling or support | 32 (17.1) | 47 (25.1) | 55 (29.4) | 8 (4.3) | 2 (1.1) | 27 (14.4) | 16 (8.6) | 0.58 (0.89) |
| Support groups for cancer | 38 (20.3) | 43 (23.0) | 52 (27.8) | 11 (5.9) | 3 (1.6) | 22 (11.8) | 18 (9.6) | 0.60 (0.97) |
| Spiritual support | 21 (11.2) | 22 (11.8) | 70 (37.4) | 11 (5.9) | 7 (3.7) | 37 (19.8) | 19 (10.2) | 0.23 (0.90) |
| Body image/sexuality domain | 154 (20.6) | 164 (21.9) | 175 (23.4) | 40 (5.3) | 9 (1.2) | 148 (19.8) | 58 (7.8) | 0.59 (0.81) |
| How the diagnosis may affect my physical appearance | 46 (24.6) | 48 (25.7) | 41 (21.9) | 7 (3.7) | 2 (1.1) | 31 (16.6) | 12 (6.4) | 074 (0.93) |
| How treatment may affect my physical appearance | 49 (26.2) | 52 (27.8) | 33 (17.6) | 7 (3.7) | 3 (1.6) | 31 (16.6) | 12 (6.4) | 0.78 (0.96) |
| How the diagnosis may affect my sex life | 29 (15.5) | 31 (16.6) | 52 (27.8) | 13 (7.0) | 2 (1.1) | 43 (23.0) | 17 (9.1) | 0.42 (0.90) |
| How treatment may affect my sex life | 30 (16.0) | 33 (17.6) | 49 (26.2) | 13 (7.0) | 2 (1.1) | 43 (23.0) | 17 (9.1) | 0.45 (0.91) |
| All items | 2066 (31.6) | 1722 (26.3) | 926 (14.1) | 236 (3.6) | 97 (1.5) | 1006 (15.4) | 492 (7.5) | 0.86 (0.70) |