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 | 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 | 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) | 7.2–8.4% | |
Craniotomy | USA [112] | 5% |
Cerebral shunt | USA [112] | 3.5% |
Vagal nerve stimulator implantation | 3.8–6.0% | |