Skip to main content

Table 3 TAND Features According to Age Bands (Based on Age at Consent)

From: TSC-associated neuropsychiatric disorders (TAND): findings from the TOSCA natural history study

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)
  1. 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 (%)
  2. aPercentages calculated considering only available data and excluding missing data
  3. 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)
  4. cPercentages calculated based on the number of individuals with reported academic difficulties as denominator
  5. dPercentages calculated based on the number of individuals who had neuropsychological skill assessed as denominator