Skip to main content

Table 3 Health care resource use in TSC patients

From: A systematic review on the burden of illness in individuals with tuberous sclerosis complex (TSC)

Measure Country of study origin Value
Outpatient visits
 Overall contact with physician
  within the past year USA [56] 99% of children and 98% of adults
  within the past year for diagnosis “epilepsy” Sweden [27] 87.8%
  per year (neurologist) Germany [116] 42.0%
 Frequency of physician contact
  within the past year (overall) USA [56] 22 (on average almost two times a month)
  per year (overall) Canada [104]
Sweden [27]
14 (mean, SD: 1.0), significantly more than the general population (8.3; SD: 0.3)
4.70 (mean, SD: 4.17); 1.65 (mean, SD: 1.95) for the ICD-10 code “epilepsy”
  per year (outpatient specialist) Canada [104] 8.7 (mean, SD 0.6)
  within the past 3 years (general practitioner) UK [23] 60.8 (on average)
  within the past 3 years (outpatient specialist) UK [23] 15.3 (on average)
Inpatient visits
 Overall rate of hospital admission
  within 1 year USA [56] 37%
  within 5 years USA [24] 85%
  within 16 years Canada [104] 84.8%
  within 5 years (intensive care unit admission) USA [24] 22.1%
 Frequency of hospital admission
  within one year USA [24] 0.5 (0.28 for neurological complications)
  within the past year (emergency room) USA [56] 2 (on average)
  within the past year (excluding emergency room) USA [56] 2 (on average)
  within the past 3 years UK [23] 3.4 (on average; two [23] to three [111] times the general population)
  per 10 person-years Canada [104] 2.5; SD: 3.2 (vs. 1.3 admissions; SD: 1.5 in the general population)
5.8; SD: 2.1 for TSC-LAM
 Annual length of stay USA [56]
Sweden [27]
5.4 days (mean, SD: 3.0)
3.25 days (mean, SD: 5.61) overall, 2.06 days (mean, SD 4.50) due to epilepsy
 Average length of stay USA [24] 6.2 days (on average; 6 days for admissions due to neurological complications)
Diagnostic procedures
 Number of patients with three or more procedures/year USA [24] 90.5%
 Average number of procedures/year USA [56] 9
 Patients with (at least one)
  EEG/year USA [24] 93.7%
  EEG/year UK [23] 46.9% of children
10.9% of adults.
  Long-term EEG/year USA [24] 64%
  MRI/year USA [24] 90.5%
  MRI/year USA [56] 66%
  MRI/year UK [23] 58.0% of children
21.1% of adults
  MRI/ last 3 years Germany [116] 78.6%
  Regular MRI in SEGA France [53] 15%
  CT/year USA [24] 55.8%
  Blood test/year USA [56] 57%
  Ultrasound/year USA [56] 45%
  Ophthalmologic evaluation/year USA [56] 40%
  Renal screening/ last 3 years Germany [116] 56.1% (specific screening modality not reported)
  Renal screening France [53] 78, 40% regularly every 2 years
  Psychiatric evaluation in those with TAND France [53] 13% (psychological or psychiatric follow-up)
ASD and other medication use
 mTOR inhibitor Sweden [27] 15.3% (for any indication; not differentiated)
 ASD use
  in individuals with epilepsy Sweden [27] 97.9% (378/386)
  in children USA [56] 69%
  in adults USA [56]
UK [23]
25%
88%
  Most common ASD Sweden [27] valproate (174/386; 45.1%)
lamotrigine (167/386; 43.3%)
carbamazepine (145/386; 37.6%)
levetiracetam (141/386; 36.5%)
  Most common ASD UK [23, 110] Carbamazepine (48.8%)
Valproate (48.8%)
Vigabatrine (43.2% children vs. 24.4% adults)
 Anxiolytic medication use
  overall Sweden [27] 72.5% (includes the potential use of benzodiazepines as ASD; not differentiated)
  in children USA [56] 21%
  in adults USA [56] 37%
 Antipsychotic medication use
  overall Sweden [27] 16.6%
  Most common antipsychotic medication Sweden [27] risperidone (11.4%)
 Anxiolytic medication use
  in children/ past 3 years UK [23, 110] 20.3–37% (includes hypnotic medication)
  in adults/ past 3 years UK [110] 33.3% (includes hypnotic medication)
 Antidepressants in children USA [56] 15%
 Psychoanaleptic medication use
  overall Sweden [27] 23.6%
  in children USA [23] 19.9%
  in adults USA [56] 20%
  Most common Sweden [27] methylphenidate (7.3%)
Surgical procedures
 Epilepsy surgery USA/Belgium [120], Germany [126], Sweden [27], multinational [26] 6.5–25.3%
Surgery for SEGA
 Brain surgery (no differentiation) USA, UK [22, 23] 7.2–8.4%
 Craniotomy USA [112] 5%
 Cerebral shunt USA [112] 3.5%
Vagal nerve stimulator implantation Multinational [26], Sweden [27] 3.8–6.0%
  1. ASD antiseizure drug, EEG electroencephalogram, CT computed tomography, ICD-10 International Classification of Diseases - 10th Revision, MRI magnetic resonance imaging, SD standard deviation, SEGA subependymal giant cell astrocytoma, TAND TSC-associated neuropsychiatric disorders, TSC tuberous sclerosis complex, TSC-LAM tuberous sclerosis complex with lymphangioleiomyomatosis