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Genetic Disease

Economic burden, work, and school productivity in individuals with tuberous sclerosis and their families

Anne M. SkalickyEvidera, Seattle, WA, USA; Correspondence[email protected]

Anne M. RentzEvidera, Seattle, WA, USA;

Zhimei LiuNovartis Oncology, East Hanover, NJ, USA;

Qayyim SaidNovartis Oncology, East Hanover, NJ, USA;

Jo Anne NakagawaThe Tuberous Sclerosis Alliance, Silver Spring, MD, USA;

Michael D. FrostMinnesota Epilepsy Group, St Paul, MN, USA;

James W. WhelessLe Bonheur Children’s Hospital and the University of Tennessee, University of Tennessee Health Science Center, Memphis, TN, USA;

David W. DunnRiley Hospital for Children, Indianapolis, IN, USA

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Figures & data

Figure 1. Selection of study respondents.

Table 1. Sociodemographic characteristics—survey respondent.

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Table 2. Sociodemographic and clinical characteristics—TSC pediatric and adult group.

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Figure 2. Out-of-pocket healthcare spending related to TSC (n = 609). Abbreviations. ER, emergency room; NS, not significant.

Figure 3. Out-of-pocket healthcare spending related to TSC by region of US (n = 609). Abbreviations. ER, emergency room; NS, not significant.

Table 3. Work productivity and activity impairment in TSC adults and caregivers^a (n = 609).

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Economic burden, work, and school productivity in individuals with tuberous sclerosis and their families

Table 1. Sociodemographic characteristics—survey respondent.

Table 2. Sociodemographic and clinical characteristics—TSC pediatric and adult group.

Table 3. Work productivity and activity impairment in TSC adults and caregivers^a (n = 609).

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Economic burden, work, and school productivity in individuals with tuberous sclerosis and their families

Figures & data

Table 1. Sociodemographic characteristics—survey respondent.

Table 2. Sociodemographic and clinical characteristics—TSC pediatric and adult group.

Table 3. Work productivity and activity impairment in TSC adults and caregiversa (n = 609).

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Academic Permissions

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Table 3. Work productivity and activity impairment in TSC adults and caregivers^a (n = 609).