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Table 1 Sociodemographic and clinical characteristics of participants (n = 121)

From: Quality of life and its predictors in adults with tuberous sclerosis complex (TSC): a multicentre cohort study from Germany

   All patients, n = 121
Age, years Mean ± SD 31.0 ± 10.5
Range 18–61
Median 29.0
IQR 22–37
Sex, n (%) Female 55 (45.5)
Male 66 (55.5)
Age at first manifestation of TSC, years Mean ± SD 3.8 ± 8.1
Range 0–41
Median 0
IQR 0–3
Age at TSC diagnosis, years Mean ± SD 8.9 ± 13.0
Range 0–53
Median 2.5
IQR 0–14.3
First TSC symptom/sign, n (%) Epilepsy/seizures 65 (53.7)
Skin manifestation 24 (19.8)
Cardiac rhabdomyoma 7 (5.8)
Renal manifestation 4 (3.3)
Eye manifestation 3 (2.5)
Cardiac arrhythmia 3 (2.5)
Other 12 (9.9)
Genetic testing, n (%) Yes, TSC1 25 (20.7)
Yes, TSC2 31 (25.6)
Yes, TSC2/PKD1 contiguous gene 1 (0.8)
Yes, but no mutation identified (NMI) 16 (13.2)
Yes, mutation not specified 10 (8.3)
No genetic testing 30 (24.8)
Unknown 8 (6.6)
Clinical manifestations, n (%) Skin 116 (95.9)
 Angiofibroma 101 (83.5)
 Hypomelanotic macules 68 (56.2)
 Shagreen patches 59 (48.8)
 Ungual fibromas 13 (10.7)
 Skin tags 4 (3.3)
 Café au lait-spots 4 (3.3)
Epilepsy/seizures 93 (76.9)
 Active epilepsy 50 (41.3)
Brain structural 86 (71.1)
 Tuber 64 (52.9)
 SEGA 51 (42.1)
 Hydrocephalus 3 (2.5)
Kidney 85 (70.2)
 AML 70 (57.9)
Heart 62 (51.2)
 Cardiac rhabdomyoma 29 (24.0)
Neuropsychiatric 60 (49.6)
Lymphangioleiomyomatosis 12 (9.9)
Other 50 (41.3)
Number of manifestations Median 5
Range 1–8
Highest school graduation certificate, n (%) High school (‘Abitur/Fachabitur’) 29 (24.0)
Intermediate school (‘Realschulabschluss/mittlere Reife’) 27 (22.3)
Secondary modern school (‘Hauptschulabschluss’) 10 (8.3)
Still in school 6 (5.0)
No certificate 29 (24.0)
Other 19 (15.7)
Current occupation, n (%) Employee full-time 35 (28.9)
Unemployment or unable to work due to TSC 29 (23.4)
Employee part-time 12 (9.9)
Unemployment or unable to work due to other illness 5 (4.1)
Self-employed 2 (1.7)
  1. AML angiomyolipoma, IQR interquartile range, PKD polycystic kidney disease, SEGA subependymal giant cell astrocytoma, SD standard deviation, TSC tuberous sclerosis complex