Burden of Illness and Quality of Life in Tuberous Sclerosis Complex: Findings From the TOSCA Study.

ABSTRACT: Research on tuberous sclerosis complex (TSC) to date has focused mainly on the physical manifestations of the disease. In contrast, the psychosocial impact of TSC has received far less attention. The aim of this study was therefore to examine the impact of TSC on health, quality of life (QoL), and psychosocial well-being of individuals with TSC and their families. Questionnaires with disease-specific questions on burden of illness (BOI) and validated QoL questionnaires were used. After completion of additional informed consent, we included 143 individuals who participated in the TOSCA (TuberOus SClerosis registry to increase disease Awareness) study. Our results highlighted the substantial burden of TSC on the personal lives of individuals with TSC and their families. Nearly half of the pa

SUBMITTER: Jansen AC 

PROVIDER: S-EPMC7485558 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature