Table 5.
Quantitative results of 5-point Likert scale of the impact inventory interview for parents
| Question | N | Not at all % (n) | Not very % (n) | Neutral % (n) | Somewhat % (n) | Very % (n) | Median3 | Mean (SD) |
|---|---|---|---|---|---|---|---|---|
| PARENTS | ||||||||
| Stress from first symptoms to diagnosis | 78 | 1.3% (1) | 7.7% (6) | 2.6% (2) | 14.1% (11) | 74.4% (58) | 4 | 3.5 (1.0) |
| Well-informed after diagnosis | 77 | 20.8% (16) | 32.5% (25) | 6.5% (5) | 16.9% (13) | 23.4% (18) | 1 | 1.9 (1.5) |
| Satisfied with diagnosis communication | 78 | 12.8% (10) | 11.5% (9) | 19.5% (15) | 30.8% (24) | 25.6% (20) | 3 | 2.5 (1.3) |
| Stress after diagnosis | 78 | 0.0% (0) | 1.3% (1) | 3.8% (3) | 11.5% (9) | 83.3% (65) | 4 | 3.8 (0.6) |
| Hope for finding a cure | 78 | 10.3% (8) | 7.7% (6) | 7.7% (6) | 28.2% (22) | 46.1% (36) | 3 | 2.9 (1.3) |
| Worried about acute deterioration | 76 | 2.6% (2) | 4.0% (3) | 7.9% (6) | 29.0% (22) | 56.6% (43) | 4 | 3.3 (1.0) |
| Frequency of worry about deterioration | 78 | 1.3% (1) | 6.4% (5) | 15.4% (12) | 32.1% (25) | 44.9% (35) | 3 | 3.1 (1.0) |
| Impact preventive measures on family life | 77 | 1.3% (1) | 5.2%(4) | 9.1% (7) | 36.4% (28) | 48.1% (37) | 3 | 3.3 (0.9) |
| Burden of caregiving1 | 78 | 19.2% (15) | 6.4%(5) | 23.1% (18) | 34.6% (27) | 16.7% (13) | 3 | 2.2 (1.4) |
| Career satisfaction | 77 | 9.1% (7) | 7.9% (6) | 24.7% (19) | 27.3% (21) | 31.2%(24) | 3 | 2.6 (1.3) |
| Concerned about finances | 78 | 11.5% (9) | 29.5% (23) | 12.8% (10) | 33.3% (26) | 12.8% (10) | 2 | 2.1 (1.3) |
| Social acceptance of VWM | 78 | 2.6% (2) | 12.8% (10) | 29.5% (23) | 38.5% (30) | 16.7% (13) | 3 | 2.5 (1.0) |
| Current knowledge of VWM | 77 | 0.0% (0) | 5.2% (4) | 3.9% (3) | 40.3% (31) | 50.7% (39) | 4 | 3.4 (0.8) |
| Know more than healthcare professionals2 | 78 | 6.4% (5) | 10.3% (8) | 19.2% (15) | 30.8% (24) | 33.3% (26) | 3 | 2.7 (1.2) |
| PARTNERS | ||||||||
| Stress from first symptoms to diagnosis | 6 | 0.0% (0) | 16.7% (1) | 16.7% (1) | 67.7% (4) | 0.00% (0) | 3 | 2.5 (0.8) |
| Well-informed after diagnosis | 6 | 0.0% (0) | 16.7% (1) | 0.0% (0) | 67.7% (4) | 16.7% (1) | 3 | 2.8 (1.0) |
| Satisfied with diagnosis communication | 6 | 0.0% (0) | 0.0% (0) | 0.0% (0) | 67.7% (4) | 33.3% (2) | 3 | 3.3 (0.5) |
| Stress after diagnosis | 6 | 0.0% (0) | 16.7% (1) | 0.0% (1) | 33.3% (2) | 50.0% (3) | 3.5 | 3.2 (1.2) |
| Hope for finding a cure | 6 | 33.3 (2) | 33.3 (2) | 0.0% (0) | 16.7 (1) | 16.7 (1) | 1 | 1.5 (1.6) |
| Worried about acute deterioration | 6 | 0.0% (0) | 16.7% (1) | 0.0% (0) | 50.0% (3) | 33.3% (2) | 3 | 3.0 (1.1) |
| Frequency of worry about deterioration | 6 | 0.0% (0) | 16.7% (1) | 0.0% (0) | 67.7% (4) | 16.7% (1) | 3 | 2.8 (1.0) |
| Impact preventive measures on family life | 6 | 0.0% (0) | 0.0% (0) | 16.7% (1) | 50.0% (3) | 33.3% (2) | 3 | 3.2 (0.8) |
| Burden of caregiving1 | 6 | 0.0% (0) | 0.0% (0) | 33.3% (2) | 16.7% (1) | 50.0% (3) | 3.5 | 3.2 (1.0) |
| Career satisfaction | 6 | 0.0% (0) | 16.7% (1) | 16.7% (1) | 16.7% (1) | 50.0% (3) | 3.5 | 3.0 (1.3) |
| Concerned about finances | 6 | 33.3% (2) | 0.0% (0) | 33.3% (2) | 33.3% (2) | 0.0% (0) | 2 | 1.7 (1.4) |
| Social acceptance of VWM | 6 | 0.0% (0) | 50.0 (3) | 16.7% (1) | 0.00% (0) | 33.3% (2) | 1.5 | 2.2 (1.5) |
| Current knowledge of VWM | 6 | 0.0% (0) | 16.7% (1) | 0.0% (0) | 67.7% (4) | 16.7% (2) | 3 | 2.8 (1.0) |
| Know more than healthcare professionals2 | 6 | 0.0% (0) | 0.0% (0) | 33.3% (2) | 33.3% (2) | 33.3% (2) | 3 | 3.0 (0.8) |
| Question | n | Not at all % (n) | Rarely % (n) | Neutral % (n) | Often % (n) | Almost always % (n) | Median3 | Mean (SD) |
|---|---|---|---|---|---|---|---|---|
| SIBLINGS | ||||||||
| Thinks about sibling having VWM | 13 | 0.0% (0) | 0.0% (0) | 23.1% (3) | 69.2% (9) | 7.7% (1) | 3 | 2.9 (0.6) |
| Talks about it with friends | 13 | 15.4% (2) | 7.7% (1) | 61.5% (8) | 15.4% (2) | 0.0% (0) | 2 | 1.8 (0.9) |
| Talks about it with parents | 13 | 15.4% (2) | 15.4% (2) | 38.5% (5) | 15.4% (2) | 15.4% (2) | 2 | 2.0 (1.3) |
| Talks about it with someone else | 13 | 23.1% (3) | 15.4% (2) | 46.2 (6) | 15.4% (2) | 0.0% (0) | 2 | 1.5 (1.0) |
| Helps taking care of sibling | 13 | 0.0% (0) | 0.0% (0) | 38.5% (5) | 46.2% (6) | 15.4% (2) | 3 | 2.8 (0.7) |
| Misses school or work | 13 | 53.9% (7) | 38.5% (5) | 7.7% (1) | 0.0% (0) | 0.0% (0) | 0 | 0.5 (0.7) |
1Scale: “absolutely not burdensome”, “not burdensome”, “neutral”, “burdensome”, “very burdensome”. 2Scale: “know absolutely less”, “know less”, “neutral”, “know more”, “know absolutely more”. 3Range of the median is for all questions 0–4. Notable items are marked in bold
N, total number; n, number