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Table 2 Comparisons of generic quality of life among individuals with TSC, as measured by the EQ-5D (German version) questionnaire, according to several potential predictors and assessed by the Kruskal–Wallis and Chi-square tests

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

Predictor Measure N Category Mean ± SD 95% CI p-value*
Sociodemographic aspects
 Sex VAS 64 Male 67.9 19.7 63.0–72.9 0.768
54 Female 66.7 21.2 60.9–72.5
Index (TTO) 64 Male 0.796 0.267 0.730–0.863 0.320
54 Female 0.843 0.257 0.773–0.914
 Age VAS 54 18–28 y 72.0 20.4 66.4–77.6 0.020
62 29–61 y 68.2 19.6 58.3–68.2
Index (TTO) 54 18–28 y 0.834 0.238 0.769–0.898 0.309
62 29–61 y 0.800 0.286 0.727–0.873
 Employment VAS 49 Yes 70.8 18.2 65.6–76.0 0.017
33 No 58.7 21.7 51.0–66.4
Index (TTO) 49 Yes 0.920 0.115 0.887–0.953 < 0.001†
33 No 0.661 0.341 0.540–0.782
 Grade of disability VAS 36 0–80 72.0 15.9 66.6–77.4 0.001†
56 90–100 58.6 20.3 53.1–64.0
Index (TTO) 36 0–80 0.916 0.101 0.882–0.950 < 0.001†
56 90–100 0.681 0.318 0.596–0.766
Clinical aspects
 Mutation type VAS 24 TSC1 72.8 18.5 65.0–80.6 0.198
30 TSC2 65.0 24.2 56.0–74.1
Index (TTO) 24 TSC1 0.803 0.288 0.682–0.924 0.662
30 TSC2 0.793 0.296 0.682–0.904
 Active epilepsy VAS 50 Yes 60.0 20.1 54.3–65.7 0.001†
71 Sz freedom > 12 m 72.3 18.9 68.2–77.4
Index (TTO) 50 Yes 0.729 0.305 0.642–0.816 0.001†
71 Sz freedom > 12 m 0.883 0.205 0.834–0.939
 Structural brain VAS 83 Yes 65.4 20.3 61.0–69.9 0.116
35 No 72.0 20.0 65.1–78.8
Index (TTO) 83 Yes 0.793 0.281 0.732–0.855 0.123
35 No 0.876 0.206 0.805–0.947
 SEGA VAS 50 Yes 62.2 20.5 56.3–68.0 0.017
68 No 71.2 19.5 66.5–75.9
Index (TTO) 50 Yes 0.802 0.268 0.725–0.877 0.597
68 No 0.830 0.260 0.767–0.893
 Neuropsychiatric VAS 60 Yes 59.1 21.4 53.5–64.7 < 0.001†
61 No 75.4 15.7 71.3–75.4
Index (TTO) 60 Yes 0.693 0.314 0.610–0.776 < 0.001†
61 No 0.938 0.107 0.911–0.966
 AML VAS 69 Yes 65.9 21.2 60.8–71.0 0.317
49 No 69.4 19.2 63.9–74.9
Index (TTO) 70 Yes 0.805 0.276 0.739–0.872 0.979
51 No 0.835 0.244 0.765–0.906
 Lymphangioleio-myomatosis VAS 12 Yes 67.5 12.7 59.4–75.6 0.844
106 No 67.4 21.1 63.3–71.4
Index (TTO) 12 Yes 0.819 0.320 0.615–1.023 0.839
106 No 0.818 0.257 0.768–0.867
 Skin VAS 114 Yes 67.1 20.5 63.3–70.9 0.469
4 No 75.0 13.5 63.3–96.6
Index (TTO) 116 Yes 0.815 0.267 0.767–0.865 0.504
5 No 0.890 0.087 0.753–1.028
 Number of affected organs VAS 30 1–3 80.9 12.3 76.3–85.5 ref. < 0.001†
72 4–6 64.5 20.3 59.7–69.3 0.005
16 7–8 55.1 20.3 44.2–65.9 0.048
Index (TTO) 30 1–3 0.931 0.159 0.872–0.990 ref. 0.001†
72 4–6 0.805 0.264 0.743–0.867 0.037
16 7–8 0.662 0.330 0.487–0.838 0.009
Therapeutic aspects
 Anti-seizure medication polytherapya VAS 53 Yes 62.3 20.2 61.7–74.9 0.223
37 No 68.3 19.8 57.3–68.4
Index (TTO) 53 Yes 0.759 0.282 0.682–0.837 0.081
40 No 0.851 0.250 0.767–0.934
 Everolimus VAS 50 Yes 61.6 20.3 55.8–67.4 0.007†
68 No 71.6 19.4 66.9–76.3
Index (TTO) 50 Yes 0.772 0.286 0.691–0.854 0.141
68 No 0.851 0.241 0.793–0.910
 LAEP VAS 34 < 35 62.6 19.7 58.3–66.9 < 0.001†
83 ≥35 78.4 17.5 72.3–84.5
Index (TTO) 34 < 35 0.757 0.287 0.695–0.820 < 0.001†
83 ≥35 0.960 0.093 0.928–0.993
  1. AML angiomyolipoma, CI confidence interval, EQ-5D EuroQoL-5 dimensions, TTO time-trade-off method, VAS visual analogue scale, LAEP Liverpool Adverse Events Profile, m months, QOLIE-31 Quality of Life in Epilepsy Inventory-31 items, ref. reference category, SD standard deviation, SEGA subependymal giant cell astrocytoma, sz seizure, TSC tuberous sclerosis complex, y years
  2. aIncludes only individuals with TSC-associated epilepsy/seizures
  3. *Comparisons corrected for multiple testing using the Benjamini–Hochberg false-discovery rate method, † and bold type denotes a q-value of < 0.05 (false discovery rate)