Baseline Findings from a Prospective Study of Children Undergoing Epilepsy Surgery - The Gap Between Quantitative and Qualitative Findings: Do Measures Measure Up?
Abstract number :
J.08
Submission category :
Year :
2000
Submission ID :
373
Source :
www.aesnet.org
Presentation date :
12/2/2000 12:00:00 AM
Published date :
Dec 1, 2000, 06:00 AM
Authors :
Lucyna M Lach, Irene M Elliott, Mary Lou Smith, Hosp For Sick Children, Toronto, ON, Canada; Univ of Toronto at Mississauga, Mississauga, ON, Canada.
RATIONALE: Studies examining psychosocial adjustment of children undergoing epilepsy surgery typically use standardized tests to capture behavioral, emotional, social and family adjustment. The purpose of this study is to contrast quantitative and qualitative baseline findings obtained from parents of children undergoing epilepsy surgery in these domains. METHODS: Data were obtained at baseline in a prospective study of pediatric (7-18 years) candidates for epilepsy surgery (29 surgical; 22 comparison). Parents filled out the Child Behavior Checklist (CBCL) and Family Environment Scale (FES) and participated in ethnographic interviews (n=27). Data were analyzed using SPSS and NUDIST* software. RESULTS: At baseline, the two groups were comparable in age, sex, FSIQ, age of onset of seizures, and number of AEDs. No group differences were found on subscales of the CBCL or FES. In the combined sample, clinically significant ratings included: internalizing (25%), externalizing (10%), total behavior problem (29%), social competence (63%), family cohesion (8%), expressiveness(20%), conflict (11%), independence (24%), achievement (22%), intellectual (29%), active-recreational (22%), moral religious (11%), and organization (44%). Qualitative analysis of parent narratives yielded very different information about these children, related to their extreme level of fatigue, frustration with epilepsy, periodic rage, exposure to bullying/teasing, restricted involvement in extracurricular activities, family's burden of vigilance and monitoring and meaning of prolonged dependence. CONCLUSIONS: The CBCL and FES compare children with intractable epilepsy to the norming population. While informative, their ability to assess constructs that are clinically relevant to this population and therefore to document the nature and severity of morbidity is restricted. When used to make decisions regarding outcomes, they should be interpreted cautiously. There is a need for more relevant instruments to measure these domains. Funded by the Ontario Mental Health Foundation