Parental view of epilepsy in Angelman syndrome: a questionnaire study

PURPOSE To explore parents’ opinions and concerns about seizures, anticonvulsants, and the effect of treatment in children with Angelman syndrome. DESIGN A postal questionnaire was sent to members of one of the UK lay groups for Angelman syndrome (ASSERT) who had a child affected by Angelman syndrom...

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Bibliographic Details
Published in:Archives of disease in childhood 1998-11, Vol.79 (5), p.423-426
Main Authors: Ruggieri, M, McShane, M A
Format: Article
Language:English
Subjects:
Adolescent
Adult
Age
Angelman syndrome
Angelman Syndrome - psychology
Anticonvulsants - adverse effects
Anticonvulsants - therapeutic use
Attitude to Health
Biological and medical sciences
Child
Child, Preschool
Children
Children & youth
Convulsions & seizures
Epilepsy
Epilepsy - drug therapy
Epilepsy - psychology
Families & family life
Female
Gene expression
Humans
Infant
Infections
Language Skills
Male
Medical sciences
Mutation
Nervous system involvement in other diseases. Miscellaneous
Neurology
Original
Ostomy
parental opinions
Parents & parenting
Parents - psychology
Patients
questionnaire
Scoliosis
Seizures
Side effects
Surgery
Surveys and Questionnaires
Treatment Outcome
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Summary:PURPOSE To explore parents’ opinions and concerns about seizures, anticonvulsants, and the effect of treatment in children with Angelman syndrome. DESIGN A postal questionnaire was sent to members of one of the UK lay groups for Angelman syndrome (ASSERT) who had a child affected by Angelman syndrome. The questionnaire requested general medical information and information about the epilepsy, its treatment, and treatment responses. RESULTS One hundred and fifty questionnaires were sent out with an ASSERT routine mailing and 78 completed questionnaires were returned. Forty three patients were boys and 35 were girls; ages ranged from 1.7 to 25 years (mean 7.5 years). The overall general clinical and cytogenetic data were mostly consistent with previous reports. Epilepsy was reported in 68 children, most of whom had a detectable cytogenetic deletion. The most common seizure types reported by the families were absence seizures, tonic clonic seizures, drop attacks, and myoclonic seizures; in four patients only febrile seizures occurred. The age at onset of the seizures was
ISSN:0003-9888
1468-2044
DOI:10.1136/adc.79.5.423