Aldenkamp A P, Van Donselaar C
Department of Neurology, University Hospital of Maastricht, Maastricht, The Netherlands.
Seizure. 2003 Dec;12(8):523-8. doi: 10.1016/s1059-1311(03)00097-9.
Opinions of patients and neurologists about aspects of their epilepsy and their treatment were compared.
Thirty-two neurologists, working in general hospitals, included 198 patients aged 16 years or more. Both neurologist and patient independently completed a questionnaire consisting of simple open questions about the epilepsy and the drug treatment. The average characteristics for this group are very similar to characteristics of the general population: age and gender distribution, highest completed educational level, occupational participation and family circumstances are not statistically significant from the general population.
Neurologists and patients appear to agree about most areas that we assessed: seizure count, severity of epilepsy, efficacy and tolerability of the treatment and impact of the epilepsy and treatment on daily life (as expressed in the 'Quality of Life ratings'). Detailed analysis showed that this agreement is partly artificially increased by the group with good outcome and less strong or even absent for the more severe epilepsies. For seizure count, we see 96.4% agreement for the group with low seizure frequency and 73.1% agreement in case of high seizure frequency. For the evaluation of severity of the epilepsy, 73.2% agreement is found for mild classification and 16.6% agreement for the severe classification. Agreement on Quality of Life (QOL) is almost complete in patients with excellent QOL (91% agreement) and almost absent for a low QOL (17% agreement). Finally, the same pattern is found for reports on side-effects of the medication. Both neurologists and patients report side-effects in about 40% of the cases. This suggests excellent agreement but individual data show that agreement is only satisfactory for the milder epilepsies (16.2% vs. 16.2%). For the more severe agreement is almost absent (4.1% of the neurologists vs. 13.4% of the patients).
Possibly, it is more difficult for the neurologist to perceive and appraise all relevant factors in the case of complex epilepsies. Alternatively, subjective definitions and assumptions of patients differ from the standards set by the neurologists in the case of continuing seizures. The clinical relevance of our findings is that, especially in the cases of more severe and refractory epilepsies, patients' opinions are of utmost importance and we cannot take our own opinions and evaluations at face value.
