Parents[ssquote] and Physicians[ssquote] Perceptions of Childhood Epilepsy: Relevance and Feasibility of Research
Abstract number :
2.226
Submission category :
Year :
2001
Submission ID :
685
Source :
www.aesnet.org
Presentation date :
12/1/2001 12:00:00 AM
Published date :
Dec 1, 2001, 06:00 AM
Authors :
B.L. Ryan, MSc, Epidemiology & Biostatistics, University of Western Ontario, London, ON, Canada; K.N. Speechley, Ph.D., Pediatrics, University of Western Ontario, London, ON, Canada; S.D. Levin, M.D., Pediatrics, University of Western Ontario, London, ON,
RATIONALE: There has been limited research examining parents[ssquote] ability to report in detail on their children[ssquote]s seizures and the impact on the child and family. Improved understanding of parents[ssquote] perceptions may be useful in improving outcomes in childhood epilepsy. Evidence suggests that parents[ssquote] perception of their child[ssquote]s epilepsy is related to their adjustment to epilepsy and that physicians[ssquote] and parents[ssquote] perceptions about the illness are not always the same. Physicians[ssquote] knowledge of and response to patients[ssquote] perceptions of illness are important to satisfaction with care, compliance with treatment and rate of recovery. We conducted a pilot study to determine feasibility of parents providing valid, comprehensive descriptions of their child[ssquote]s epilepsy and to collect preliminary information on whether degree of concordance between parents[ssquote] and physicians[ssquote] perceptions affects parental satisfaction with care.
METHODS: Self-administered, structured surveys were sent to a random sample of parents of children ages 5 to 17 years with epileptic seizures being treated at a regional tertiary care children[ssquote]s hospital and to their child[ssquote]s pediatric neurologist. The survey included questions concerning medical and day to day aspects of children[ssquote]s epileptic seizures. Of 49 parents randomly selected, 37 responded (75.5%).
RESULTS: Parents appeared to provide valid distinctions among seizure types. For example, the mean severity score for absence seizures was 21 vs. 42 for generalized seizures. There was a low concordance between parents and the physician for all aspects of children[ssquote]s epileptic seizures; kappa values were less than 0.4 for 18 out of 23 variables. There was lower concordance concerning day to day aspects (mean kappa value=0.206) than medical aspects (mean kappa value=0.433). Lower concordance on overall impact of seizures, seizure length, seizure severity, seizure type, restriction on family activities, and parental worry was related to lower parental satisfaction.
CONCLUSIONS: Parents are willing and able to validly identify and describe their children[ssquote]s seizures using a structured, self-administered survey. Results provide preliminary evidence that concordance between parents[ssquote] and physicians[ssquote] perceptions of childhood epilepsy is low on all aspects of seizures, especially non-medical aspects and that enhanced concordance may improve parental satisfaction with care. If these results are replicated in a larger sample, clinical implications include a need for the adoption of a more patient-centered communication style that would close the concordance gap.
Support: Child Health Research Institute.