Table 3.
TAND Features According to Age Bands (Based on Age at Consent)
| TAND Features | Age at Registry Consent, Years | ||||||
|---|---|---|---|---|---|---|---|
| ≤ 2 | > 2to ≤ 5 | > 5 to ≤ 9 | > 9 to ≤ 14 | > 14 to ≤ 18 | > 18 to ≤ 40 | > 40 | |
| n = 283 | n = 301 | n = 335 | n = 307 | n = 184 | n = 579 | n = 227 | |
| Behavioural levela | |||||||
| Overactivity | 21 (53.8) | 77 (65.3) | 94 (60.6) | 67 (47.5) | 31 (40.8) | 41 (23.7) | 6 (12.8) |
| Sleep difficulties | 24 (64.9) | 43 (38.4) | 61 (40.7) | 68 (48.6) | 29 (36.3) | 70 (38.5) | 36 (67.9) |
| Impulsivity | 12 (31.6) | 54 (47.4) | 79 (52.0) | 70 (49.3) | 29 (38.2) | 67 (38.3) | 6 (13.3) |
| Anxiety | 2 (5.6) | 24 (21.2) | 33 (22.9) | 45 (33.3) | 26 (34.2) | 74 (44.6) | 36 (72) |
| Mood swings | 5 (13.5) | 18 (16.1) | 39 (25.8) | 36 (27.1) | 30 (40.5) | 77 (46.4) | 9 (20) |
| Severe aggression | 2 (5.4) | 15 (13.0) | 45 (29.2) | 40 (27.8) | 19 (24.4) | 57 (31.7) | 5 (10.9) |
| Depression mood | 0 | 0 | 10 (6.9) | 17 (12.7) | 14 (18.7) | 68 (40.2) | 30 (55.6) |
| Self-injury | 3 (7.9) | 9 (7.8) | 28 (18.7) | 23 (16.1) | 10 (12.7) | 37 (20.6) | 7 (14.3) |
| Obsessions | 2 (5.6) | 7 (6.3) | 15 (10.3) | 22 (16.3) | 13 (17.6) | 33 (19.9) | 8 (17.0) |
| Psychosis | 0 | 2 (1.8) | 4 (2.8) | 7 (5.2) | 2 (2.6) | 22 (12.6) | 3 (6.3) |
| Hallucinations | 0 | 0 | 0 | 3 (2.3) | 0 | 21 (11.9) | 2 (4.3) |
| Psychiatric levela | |||||||
| ASD | 18 (10.8) | 49 (22.9) | 73 (26.2) | 68 (26.3) | 38 (26) | 65 (18.6) | 3 (4.2) |
| ADHD | 11 (7.1) | 50 (24.2) | 82 (31.1) | 61 (24.5) | 23 (16.7) | 39 (12.1) | 2 (2.9) |
| Anxiety disorder | 1 (0.6) | 8 (3.9) | 15 (5.9) | 31 (13.1) | 13 (10.4) | 51 (16.1) | 14 (19.7) |
| Depressive disorder | 0 | 3 (1.4) | 2 (0.8) | 8 (3.4) | 8 (6.3) | 44 (14.2) | 19 (25) |
| Intellectual levelb | |||||||
| Normal IQ | 37 (56.1) | 72 (52.9) | 74 (39.8) | 64 (37.9) | 36 (38.3) | 82 (42.7) | 28 (66.7) |
| Mild ID | 18 (27.3) | 38 (27.9) | 58 (31.2) | 56 (33.1) | 32 (34.0) | 43 (22.4) | 4 (9.5) |
| Moderate ID | 9 (13.6) | 17 (12.5) | 36 (19.4) | 25 (14.8) | 14 (14.9) | 30 (15.6) | 3 (7.1) |
| Severe ID | 1 (1.5) | 9 (6.6) | 13 (7.0) | 18 (10.7) | 10 (10.6) | 27 (14.1) | 4 (9.5) |
| Profound ID | 1 (1.5) | 0 | 5 (2.7) | 6 (3.6) | 2 (2.1) | 10 (5.2) | 3 (7.1) |
| Academic level | |||||||
| Individuals ever had difficulties in academic performancea | 1 (1.3) | 48 (36.9) | 167 (69.3) | 193 (75.7) | 97 (73.5) | 195 (59.6) | 34 (37.4) |
| Individuals assessed for academic difficultiesc | 0 | 20 (41.7) | 93 (55.7) | 103 (53.4) | 57 (58.8) | 77 (39.5) | 9 (26.5) |
| Neuropsychological level | |||||||
| Individuals ever had any neuropsychological skill assesseda | 31 (20.4) | 69 (32.4) | 121 (48.2) | 124 (53.2) | 69 (55.2) | 129 (42.7) | 21 (26.6) |
| Individuals with performance <5th percentiled | 12 (38.7) | 35 (50.7) | 69 (57.0) | 78 (62.9) | 41 (59.4) | 72 (55.8) | 7 (33.3) |
ASD autism spectrum disorder, ADHD attention deficit hyperactivity disorder, IQ intelligence quotient, ID intellectual disability, TAND TSC-associated neuropsychiatric disorders. Values are expressed as n (%)
aPercentages calculated considering only available data and excluding missing data
bPercentages calculated considering individuals with IQ assessment available in each age group: ≤ 2 years (n = 66); > 2 to ≤5 years (n = 136); > 5 to ≤9 (n = 186); > 9 to ≤14 (n = 169); > 14 to ≤18 (n = 94); > 18 to ≤40 (n = 192); > 40 (n = 42)
cPercentages calculated based on the number of individuals with reported academic difficulties as denominator
dPercentages calculated based on the number of individuals who had neuropsychological skill assessed as denominator