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| Frontiers in neurology. 2020 Aug 28. doi: 10.3389/fneur.2020.00904. pmc: PMC7485558 |
| Burden of Illness and Quality of Life in Tuberous Sclerosis Complex: Findings From the TOSCA Study. |
| Jansen AC1, Vanclooster S2, de Vries PJ3, Fladrowski C4, Beaure d'Augères G5, Carter T6, Belousova E7, Benedik MP8, Cottin V9, Curatolo P10, Dahlin M11, D'Amato L12, Ferreira JC13, Feucht M14, Hertzberg C15, Jozwiak S16, Lawson JA17, Macaya A18, Marques R19, Nabbout R20, O'Callaghan F21, Qin J22, Sander V23, Sauter M24, Shah S25, Takahashi Y26, Touraine R27, Youroukos S28, Zonnenberg B29, Kingswood JC30 |
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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 patients experienced negative progress in their education or career due to TSC (42.1%), as well as many of their caregivers (17.6% employed; 58.8% unemployed). Most caregivers (76.5%) indicated that TSC affected family life, and social and working relationships. Further, well-coordinated care was lacking: a smooth transition from pediatric to adult care was mentioned by only 36.8% of adult patients, and financial, social, and psychological support in 21.1, 0, and 7.9%, respectively. In addition, the moderate rates of pain/discomfort (35%) and anxiety/depression (43.4%) reported across all ages and levels of disease demonstrate the high BOI and low QoL in this vulnerable population. |
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Copyright © 2020 Jansen, Vanclooster, de Vries, Fladrowski, Beaure d'Augères, Carter, Belousova, Benedik, Cottin, Curatolo, Dahlin, D'Amato, Ferreira, Feucht, Hertzberg, Jozwiak, Lawson, Macaya, Marques, Nabbout, O'Callaghan, Qin, Sander, Sauter, Shah, Takahashi, Touraine, Youroukos, Zonnenberg and Kingswood. |
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KEYWORDS: TOSCA, burden of illness, epilepsy, quality of life, tuberous sclerosis complex |
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Publikations ID: 32982929 Quelle: öffnen |
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