Parental Understanding of Tuberous Sclerosis Complex

Pauline Samia, Kirsten A. Donald, Birgit Schlegel, Jo M. Wilmshurst

Research output: Contribution to journalArticlepeer-review

6 Citations (Scopus)


Tuberous sclerosis complex is a genetic disorder with multisystem involvement that poses significant challenges to the affected child and family. Caregiver knowledge in the South African population has not previously been reported. A prospective study of the parents of 21 children with tuberous sclerosis complex was undertaken. Median parental age was 38 (interquartile range 34.5-45) years. Parents were randomly allocated to receive written information about the condition, or to receive verbal counseling already established in clinic. A significant difference (P =.001) was observed in the change in the mean knowledge scores for the parent group that received written information (34.2 at baseline, 51.7 at the second visit. This impact was higher in parents with an education level of at least grade 8 (P =.003). Parental understanding of tuberous sclerosis complex can be improved by provision of written information and should be routinely available in a readily understandable format.

Original languageEnglish
Pages (from-to)1281-1286
Number of pages6
JournalJournal of Child Neurology
Issue number10
Publication statusPublished - 18 Sept 2015


  • autism
  • parental perceptions
  • seizures
  • tuberous sclerosis complex
  • tuberous sclerosis complex


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