A systematic review on the burden of illness in individuals with tuberous sclerosis complex (TSC).
Johann Philipp ZöllnerDavid Neal FranzChristoph HertzbergRima NabboutFelix RosenowMatthias SauterSusanne Schubert-BastAdelheid Wiemer-KruelAdam StrzelczykPublished in: Orphanet journal of rare diseases (2020)
TSC patients and their caregivers have a high burden of illness, and TSC patients incur high costs in health care systems. At the same time, the provision of inadequate treatment that does not adhere to published guidelines is common and centralized TSC care is received by no more than half of individuals who need it, especially adults. Further studies focusing on the cost effectiveness and BOI outcomes of coordinated TSC care as well as of new treatment options such as mTOR inhibitors are necessary.
Keyphrases
- healthcare
- end stage renal disease
- palliative care
- ejection fraction
- newly diagnosed
- chronic kidney disease
- peritoneal dialysis
- patient reported outcomes
- systematic review
- cell proliferation
- adipose tissue
- risk factors
- quality improvement
- chronic pain
- health insurance
- affordable care act
- insulin resistance
- social media
- smoking cessation