title: Parental Understanding of Tuberous Sclerosis Complex.
abstract: 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.
authors.affiliation: Aga Khan University, Nairobi, Kenya pauline.samia@aku.edu.
authors.forename: Pauline
authors.initials: P
authors.lastname: Samia
authors.affiliation: Division of Developmental Pediatrics, Red Cross War Memorial Children's Hospital, University of Cape Town, Cape Town, South Africa.
authors.forename: Kirsten A
authors.initials: KA
authors.lastname: Donald
authors.affiliation: Department of Pediatric Neurology, Red Cross War Memorial Children's Hospital, University of Cape Town, Cape Town, South Africa.
authors.forename: Birgit
authors.initials: B
authors.lastname: Schlegel
authors.affiliation: Department of Pediatric Neurology, Red Cross War Memorial Children's Hospital, University of Cape Town, Cape Town, South Africa.
authors.forename: Jo M
authors.initials: JM
authors.lastname: Wilmshurst
mesh_terms: D000328:Adult; D017028:Caregivers; D002648:Child; D003376:Counseling; D004522:Educational Status; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008875:Middle Aged; D009462:Neurology / Q000193:education; D010290:Parents / Q000523:psychology*; D010353:Patient Education as Topic; D010372:Pediatrics / Q000193:education; D011446:Prospective Studies; D011897:Random Allocation; D013019:South Africa; D014402:Tuberous Sclerosis
keywords: autism; parental perceptions; seizures; tuberous sclerosis complex