TABLE 4.
Category | Overall | By age at consent, years | |||
---|---|---|---|---|---|
N = 179 | ≤2 N = 7 | >2 to ≤9 N = 27 | >9 to <18 N = 27 | ≥18 N = 118 | |
Common behavioral problems in TSC | |||||
Patients with at least one behavioral problem a | 88 (49.2) | 6 (85.7) | 21 (77.8) | 19 (70.4) | 42 (35.6) |
Sleep difficulties | |||||
Yes | 42 (47.7) | 4 (66.7) | 14 (66.7) | 9 (47.4) | 15 (35.7) |
No | 32 (36.4) | 2 (33.3) | 6 (28.6) | 8 (42.1) | 16 (38.1) |
Unknown | 14 (15.9) | 0 | 1 (4.8) | 2 (10.5) | 11 (26.2) |
Severe aggression | |||||
Yes | 21 (23.9) | 3 (50.0) | 5 (23.8) | 6 (31.6) | 7 (16.7) |
No | 52 (59.1) | 3 (50.0) | 15 (71.4) | 13 (68.4) | 21 (50.0) |
Unknown | 15 (17.0) | 0 | 1 (4.8) | 0 | 14 (33.3) |
Self-injury | |||||
Yes | 15 (17.0) | 1 (16.7) | 11 (52.4) | 1 (5.3) | 2 (4.8) |
No | 56 (63.6) | 5 (83.3) | 10 (47.6) | 17 (89.5) | 24 (57.1) |
Unknown | 17 (19.3) | 0 | 0 | 1 (5.3) | 16 (38.1) |
Impulsivity | |||||
Yes | 27 (30.7) | 3 (50.0) | 8 (38.1) | 8 (42.1) | 8 (19.0) |
No | 44 (50.0) | 3 (50.0) | 12 (57.1) | 11 (57.9) | 18 (42.9) |
Unknown | 17 (19.3) | 0 | 1 (4.8) | 0 | 16 (38.1) |
Overactivity | |||||
Yes | 20 (22.7) | 3 (50.0) | 7 (33.3) | 4 (21.1) | 6 (14.3) |
No | 51 (58.0) | 3 (50.0) | 14 (66.7) | 14 (73.7) | 20 (47.6) |
Unknown | 17 (19.3) | 0 | 0 | 1 (5.3) | 16 (38.1) |
Depression mood | |||||
Yes | 31 (35.2) | 0 | 4 (19.0) | 6 (31.6) | 21 (50.0) |
No | 46 (52.3) | 6 (100.0) | 16 (76.2) | 12 (63.2) | 12 (28.6) |
Unknown | 11 (12.5) | 0 | 1 (4.8) | 1 (5.3) | 9 (21.4) |
Anxiety | |||||
Yes | 38 (43.2) | 0 | 10 (47.6) | 7 (36.8) | 21 (50.0) |
No | 38 (43.2) | 6 (100.0) | 11 (52.4) | 11 (57.9) | 10 (23.8) |
Unknown | 12 (13.6) | 0 | 0 | 1 (5.3) | 11 (26.2) |
Mood swings | |||||
Yes | 33 (37.5) | 1 (16.7) | 10 (47.6) | 6 (31.6) | 16 (38.1) |
No | 40 (45.5) | 5 (83.3) | 10 (47.6) | 12 (63.2) | 13 (31.0) |
Unknown | 15 (17.0) | 0 | 1 (4.8) | 1 (5.3) | 13 (31.0) |
Obsession | |||||
Yes | 14 (15.9) | 0 | 4 (19.0) | 3 (15.8) | 7 (16.7) |
No | 56 (63.6) | 6 (100.0) | 15 (71.4) | 15 (78.9) | 20 (47.6) |
Unknown | 18 (20.5) | 0 | 2 (9.5) | 1 (5.3) | 15 (35.7) |
Hallucination | |||||
Yes | 4 (4.5) | 0 | 0 | 0 | 4 (9.5) |
No | 66 (75.0) | 5 (83.3) | 20 (95.2) | 18 (94.7) | 23 (54.8) |
Unknown | 18 (20.5) | 1 (16.7) | 1 (4.8) | 1 (5.3) | 15 (35.7) |
Psychosis | |||||
Yes | 8 (9.1) | 1 (16.7) | 4 (19.0) | 0 | 3 (7.1) |
No | 61 (69.3) | 4 (66.7) | 16 (76.2) | 18 (94.7) | 23 (54.8) |
Unknown | 19 (21.6) | 1 (16.7) | 1 (4.8) | 1 (5.3) | 16 (38.1) |
Psychiatric disorders | |||||
ASD | |||||
Yes | 39 (21.8) | 2 (28.6) | 15 (55.6) | 7 (25.9) | 15 (12.7) |
No | 63 (35.2) | 4 (57.1) | 11 (40.7) | 18 (66.7) | 30 (25.4) |
Not done | 77 (43.0) | 1 (14.3) | 1 (3.7) | 2 (7.4) | 73 (61.9) |
ADHD | |||||
Yes | 14 (7.8) | 1 (14.3) | 8 (29.6) | 1 (3.7) | 4 (3.4) |
No | 78 (43.6) | 5 (71.4) | 16 (59.3) | 21 (77.8) | 36 (30.5) |
Not done | 87 (48.6) | 1 (14.3) | 3 (11.1) | 5 (18.5) | 78 (66.1) |
Depressive disorder | |||||
Yes | 14 (7.8) | 0 | 1 (3.7) | 2 (7.4) | 11 (9.3) |
No | 81 (45.3) | 6 (85.7) | 23 (85.2) | 20 (74.1) | 32 (27.1) |
Not done | 84 (46.9) | 1 (14.3) | 3 (11.1) | 5 (18.5) | 75 (63.6) |
Anxiety disorder | |||||
Yes | 23 (12.8) | 0 | 6 (22.2) | 4 (14.8) | 13 (11.0) |
No | 70 (39.1) | 6 (85.7) | 18 (66.7) | 18 (66.7) | 28 (23.7) |
Not done | 86 (48.0) | 1 (14.3) | 3 (11.1) | 5 (18.5) | 77 (65.3) |
Other psychiatric disorder | |||||
Yes | 16 (8.9) | 0 | 4 (14.8) | 4 (14.8) | 8 (6.8) |
No | 79 (44.1) | 6 (85.7) | 20 (74.1) | 19 (70.4) | 34 (28.8) |
Not done | 84 (46.9) | 1 (14.3) | 3 (11.1) | 4 (14.8) | 76 (64.4) |
Intellectual ability | |||||
Intellectual ability measured | |||||
Yes | 59 (33.0) | 5 (71.4) | 23 (85.2) | 15 (55.6) | 16 (13.6) |
No | 42 (23.5) | 2 (28.6) | 3 (11.1) | 11 (40.7) | 26 (22.0) |
Unknown | 78 (43.6) | 0 | 1 (3.7) | 1 (3.7) | 76 (64.4) |
Number of patients with IQ score a | 57 (31.8) | 4 (57.1) | 22 (81.5) | 15 (55.6) | 16 (13.6) |
Normal | 16 (28.1) | 1 (25.0) | 6 (27.3) | 3 (20.0) | 6 (37.5) |
Mild intellectual disability | 23 (40.4) | 1 (25.0) | 9 (40.9) | 7 (46.7) | 6 (37.5) |
Moderate intellectual disability | 13 (22.8) | 1 (25.0) | 5 (22.7) | 3 (20.0) | 4 (25.0) |
Severe intellectual disability | 10 (17.5) | 2 (50.0) | 2 (9.1) | 3 (20.0) | 3 (18.8) |
Profound intellectual disability | 3 (5.3) | 0 | 3 (13.6) | 0 | 0 |
Neuropsychological skills assessment | |||||
Yes a | 61 (34.1) | 7 (100.0) | 21 (77.8) | 14 (51.9) | 19 (16.1) |
No | 32 (17.9) | 0 | 5 (18.5) | 10 (37.0) | 17 (14.4) |
Not done | 86 (48.0) | 0 | 1 (3.7) | 3 (11.1) | 82 (69.5) |
Patients with any deficit b | 47 (77.0) | 6 (85.7) | 15 (71.4) | 12 (85.7) | 14 (73.7) |
Academic/scholastic skills difficulties | |||||
Yes a | 74 (41.3) | 3 (42.9) | 21 (77.8) | 23 (85.2) | 27 (22.9) |
No | 19 (10.6) | 1 (14.3) | 4 (14.8) | 3 (11.1) | 11 (9.3) |
Not done | 86 (48.0) | 3 (42.9) | 2 (7.4) | 1 (3.7) | 80 (67.8) |
Patients with assessed difficulties | 34 (45.9) | 1 (33.3) | 12 (57.1) | 11 (47.8) | 10 (37.0) |
ADHD, attention-deficit hyperactivity disorder; ASD, autism spectrum disorder; IQ, intelligence quotient; TAND, TSC-associated neuropsychiatric disorders; TSC, tuberous sclerosis complex.
Used as denominator to calculate percent rates for each subcategory.
Performance <5th percentile.
Data are represented as n (%).