Table 3 TSC-Associated Neuropsychiatric Disorders (TAND) features reported in TOSCA at baseline
From: TuberOus SClerosis registry to increase disease Awareness (TOSCA) – baseline data on 2093 patients
TAND features | Patients with manifestation, n/patients with available data (%) | Patients with available data, n/2093 (%) | Missing data, n/2093 (%) |
|---|---|---|---|
Behavioral difficulties | |||
Overactivity | 317 (20.7) | 1533 (73.2) | 560 (26.8) |
Sleep difficulties | 301 (19.5) | 1540 (73.6) | 553 (26.4) |
Impulsivity | 297 (19.4) | 1533 (73.2) | 560 (26.8) |
Anxiety | 205 (13.7) | 1498 (71.6) | 595 (28.4) |
Mood swings | 201 (13.4) | 1499 (71.6) | 594 (28.4) |
Severe aggression | 168 (10.8) | 1559 (74.5) | 534 (25.5) |
Depression mood | 124 (8.3) | 1500 (71.7) | 593 (28.3) |
Self-injury | 106 (6.8) | 1555 (74.3) | 538 (25.7) |
Obsession | 92 (6.1) | 1505 (71.9) | 588 (28.1) |
Psychosis | 34 (2.3) | 1514 (72.3) | 579 (27.7) |
Hallucination | 23 (1.5) | 1512 (72.2) | 581 (27.8) |
Psychiatric disorders | |||
ASD | 291 (20.7) | 1406 (67.1) | 687 (32.8) |
ADHD | 260 (19.6) | 1329 (63.4) | 764 (36.5) |
Anxiety | 118 (9.1) | 1294 (61.8) | 799 (38.2) |
Depression | 80 (6.1) | 1301 (62.1) | 792 (37.8) |
Intellectual Abilitya | |||
Normal | 371 (45.1) | NA | NA |
Mild ID | 232 (28.2) | NA | NA |
Moderate ID | 123 (15.0) | NA | NA |
Severe ID | 75 (9.1) | NA | NA |
Profound ID | 21 (2.6) | NA | NA |
Academic difficulties | |||
Patients ever had difficulties in academic performance | 682 (57.8) | 1179 (56.3) | 914 (43.7) |
Patients assessed for academic difficulties | 332 (48.6% of those with reported difficulties) | 332 (15.9) | NA |
Neuropsychological difficulties | |||
Patients ever had any neuropsychological skill assessed | 510 (40.1) | 1270 (60.6) | 823 (39.3) |
Patients with performance < 5th percentile | 281 (55% of those who had neuropsychological assessment) | 281 (13.4) | NA |