Burden of illness in tuberous sclerosis complex-associated epilepsy: a systematic literature review of epidemiology, health-related quality of life, costs and resource use

This review summarises the BOI caused by the early onset and refractory nature of TSC-associated epilepsy. Limitations include a lack of recent prevalence data (> 2016), standardised PROs, formal statistical analysis, BOI data in adults and impact on wider family QOL. More robust epidemiological data are needed. Nevertheless, this review supports the importance of early identification and effective seizure management to improve the BOI of TSC-associated epilepsy for patients, caregivers and the wider family, and society.