Treatment of epilepsy in daily clinical practice: have outcomes improved over the past 10 years?

In the past decade, many new antiepileptic drugs have become available, but their influence on patient outcomes in daily practice is not well known. In a community-based study, we assessed changes in epilepsy treatment and outcomes over a 10-year period. We compared two cross-sectional community-based samples that were obtained from the same Dutch suburban region in 2000 and 2010 using pharmacy records for recruitment, including 344 and 248 epilepsy patients, respectively. The main outcome was self-reported quality of life (QoL, using the QOLIE-31). Potential predictors of QoL (adverse effects, seizure control, seizure acceptability, demographic, epilepsy- or treatment-related determinants) were assessed by multivariable linear regression. New antiepileptic drugs were used by 9 % of patients in 2000 and 34 % in 2010, P < 0.001. More than 80 % in both samples reported to be treated by a neurologist. We found no significant differences in QOLIE-31 scores (72.57 vs. 72.44), or in the proportion of patients with complete seizure control (51 vs. 54 %), between the two study samples. Seizure control and adverse effects were important independent predictors of quality of life, explaining 58 % of the variance. We found no evidence that in this community the QoL of epilepsy patients has improved in the last decade, despite unrestricted availability of healthcare resources, including accessibility to new AEDs. The relatively low proportion with complete seizure control and the high rate of adverse effects in these community-based samples suggest that the effectiveness of epilepsy treatment is still far from optimal.

Prognostic factors for medically intractable epilepsy: a systematic review.

OBJECTIVE: One third of all epilepsy patients have medically intractable epilepsy. Knowledge of prognostic factors that, in an early therapeutic stage of epilepsy, herald intractability could facilitate patient management. In this systematic review, we examined the evidence for independent prognostic factors of intractability in patients with epilepsy. METHODS: MEDLINE and EMBASE were searched for cohort studies reporting on prognostic factors for medically intractable epilepsy. After selection of abstracts, full-text articles were obtained and their quality was assessed by two reviewers, using the QUIPS checklist. All independent prognostic factors in the individual studies were summarized. RESULTS: Eleven cohort studies were included, of which ten hospital-based. Younger age at seizure onset, symptomatic etiology, high initial seizure frequency, medical history, epileptic EEG abnormalities, and failure of previous antiepileptic-drugs (AEDs) were documented as independent prognostic factors of intractability in at least 2 of the 11 studies; none of these factors was reported in all 11 studies. None of the studies considered genetic, neurobiological, or immunological factors. The studies were of moderate quality, mostly because they did not provide a conceptual model for the choice of predictors. Heterogeneity in study design, population, candidate prognostic factors, and outcome definitions precluded statistical pooling. CONCLUSIONS: While potentially relevant prognosticators of medically intractable epilepsy have been identified, the evidence for these factors is not consistent. There is a need for well-designed prognostic population-based cohort studies that also include pharmacological, genetic, neurobiological, and immunological factors. A valid model for the early prediction of medically intractable epilepsy could improve patient management.

Epilepsy surgery can help many more adult patients with intractable seizures.

PURPOSE: To quantify underreferral for epilepsy surgery in The Netherlands, and reveal its causes. METHODS: Cross-sectional sample of medical files of epilepsy patients from eight general hospitals and two tertiary care epilepsy centers. We selected patients, not seizure free despite 3 or more anti-epileptic drugs. Medical records were judged by an expert panel whether referral should have been done according to published Dutch guidelines. The treating neurologists were confronted with the panel's judgement. KEY FINDINGS: In a sample of 1424 patients, 69 had been referred; another 265 were intractable and not referred; 139 of these 265 patients should have been according to the panel. In 89 of 139 patients, the neurologist gave additional arguments for not referring, mainly the physician's estimate of (low) seizure burden or the patient's psychological condition. In 66 of 89 cases, this could not convince the panel. Attitudes were similar in secondary and tertiary treatment centers. Multivariable data analysis showed independent predictors of incorrectly, versus correctly, not referred patients. SIGNIFICANCE: Substantial underreferral exists in The Netherlands, withholding refractory patients seizure freedom. Adherence to existing guidelines, better prioritizing of surgical work-up, and unprejudiced discussion of surgical treatment with the patient, could lead to 2-2.5 times more referrals.

Prognosis after temporal lobe epilepsy surgery: the value of combining predictors.

PURPOSE: Although several independent predictors of seizure freedom after temporal lobe epilepsy surgery have been identified, their combined predictive value is largely unknown. Using a large database of operated patients, we assessed the combined predictive value of previously reported predictors included in a single multivariable model. METHODS: The database comprised a cohort of 484 patients who underwent temporal lobe surgery for drug-resistant epilepsy. Good outcome was defined as Engel class 1, one year after surgery. Previously reported independent predictors were tested in this cohort. To be included in our final prediction model, predictors had to show a multivariable p-value of <0.20. RESULTS: The final multivariable model included predictors obtained from the patient's history (absence of tonic-clonic seizures, absence of status epilepticus), magnetic resonance imaging [MRI; ipsilateral mesial temporal sclerosis (MTS), space occupying lesion], video electroencephalography (EEG; absence of ictal dystonic posturing, concordance between MRI and ictal EEG), and fluorodeoxyglucose positron emission tomography (FDG-PET; unilateral temporal abnormalities), that were related to seizure freedom in our data. The model showed an expected receiver-operating characteristic curve (ROC) area of 0.63 [95% confidence interval (CI) 0.57-0.68] for new patient populations. Intracranial monitoring and surgery-related parameters (including histology) were not important predictors of seizure freedom. Among patients with a high probability of seizure freedom, 85% were seizure-free one year after surgery; however, among patients with a high risk of not becoming seizure-free, still 40% were seizure-free one year after surgery. CONCLUSION: We could only moderately predict seizure freedom after temporal lobe epilepsy surgery. It is particularly difficult to predict who will not become seizure-free after surgery.

Decision-making in temporal lobe epilepsy surgery: the contribution of basic non-invasive tests.

PURPOSE: We studied the extent to which the widely used diagnostic tests contribute to the decision whether or not to perform temporal lobe epilepsy (TLE) surgery in The Netherlands. METHODS: This nation-wide, retrospective study included 201 consecutive patients referred for TLE surgery screening. The individual and combined contribution of nine index tests to the consensus decision to perform surgery was investigated. The contribution of each test was quantified using multivariable logistic regression and ROC curves. RESULTS: Surgery was performed in 119 patients (59%). Patient history and routine EEG findings were hardly contributory to decision-making, whereas a convergence of MRI with long-term interictal and ictal EEG findings correctly identified the candidates considered eligible for surgery (25% of total). Videotaped seizure semiology contributed less to the results. The area under the ROC curve of the combination of basic tests was 0.75. Ineligibility was never accurately predicted with any test combination. CONCLUSIONS: In the Dutch presurgical work-up, when MRI and long-term EEG findings were concordant, a decision for TLE surgery could be reached without further ancillary tests. Videotaped seizure semiology contributed less than expected to the final clinical decision. In our study, basic test findings alone were insufficient to exclude patients from surgery.

The added value of [18F]-fluoro-D-deoxyglucose positron emission tomography in screening for temporal lobe epilepsy surgery.

PURPOSE: [18F]-Fluoro-d-deoxyglucose positron emission tomography (FDG-PET) is an expensive, invasive, and not widely available technique used in the presurgical evaluation of temporal lobe epilepsy. We assessed its added value to the decision-making process in relation to other commonly used tests. METHODS: In a retrospective study of a large series of consecutive patients referred to the national Dutch epilepsy surgery program between 1996 and 2002, the contribution of FDG-PET, magnetic resonance imaging (MRI), and video-electroencephalogram (video-EEG) monitoring findings, alone or in combination, to the decision whether to perform surgery was investigated. The impact of FDG-PET was quantified by comparing documented decisions concerning surgery before and after FDG-PET results. RESULTS: Of 469 included patients, 110 (23%) underwent FDG-PET. In 78 of these patients (71%), FDG-PET findings led clinicians to change the decision they had made based on MRI and video-EEG monitoring findings. In 17% of all referred patients, the decision regarding surgical candidacy was based on FDG-PET findings. FDG-PET was most useful when previous MRI results were normal (p < 0.0001) or did not show unilateral temporal abnormalities (p < 0.0001), or when ictal EEG results were not consistent with MRI findings (p < 0.0001) or videotaped seizure semiology (p = 0.027). The positive and negative predictive values for MRI and video-EEG monitoring, which ranged from 0.48 to 0.67, were improved to 0.62 to 0.86 in combination with FDG-PET. CONCLUSIONS: In patients referred for TLE surgery, FDG-PET findings can form the basis for deciding whether a patient is eligible for surgery, and especially when MRI or video-EEG monitoring are nonlocalizing.

What is the current evidence on decision-making after referral for temporal lobe epilepsy surgery? A review of the literature.

OBJECTIVES: Many patients thought to have temporal lobe epilepsy, are evaluated for surgical treatment. Decision-making in epilepsy surgery is a multidisciplinary, phased process involving complex diagnostic tests. This study reviews the literature on the value of different tests to decide on whether to operate. METHODS: Articles were selected when based on the consensus decision whether to perform temporal lobe surgery, or on the consensus localization or lateralization of the epileptic focus. The articles were scrutinized for sources of bias as formulated in methodological guidelines for diagnostic studies (STARD). RESULTS: Most studies did not fulfill the criteria, largely because they addressed prognostic factors in operated patients only. Ten articles met our inclusion criteria. In most articles, a single test was studied; SPECT accounted for five papers. Unbiased comparison of the results was not possible. CONCLUSION: Surprisingly little research in epilepsy surgery has focused on the decision-making process as a whole. Future studies of the added value of consecutive tests are needed to avoid redundant testing, enable future cost-efficiency analyses, and provide guidelines for diagnostic strategies after referral for temporal lobe epilepsy surgery.

Structure and reliability of Ware's Patient Satisfaction Questionnaire III: patients' satisfaction with oncological care in the Netherlands.

BACKGROUND: The present study examined the structure and reliability of the Dutch version of the Patient Satisfaction Questionnaire III (PSQ III). The PSQ III was designed to measure technical competence, interpersonal manner, communication, time spent with doctor, financial aspects, and access to care. In the Dutch version, the financial items were left aside because these are not appropriate for the Dutch socialized system. OBJECTIVES: The main objectives were to assess response bias, the number of dimensions needed to describe the PSQ III items, and the reliability of the scales. In addition, distribution characteristics were examined and norm scores to interpret satisfaction scores in an oncological setting were presented. RESEARCH DESIGN: A cross-sectional survey study.SUBJECTS The study was comprised of 1594 cancer patients from eight hospitals. MEASURES: The Dutch version of the PSQ III. RESULTS: Approximately 14% of the respondents were found to demonstrate considerable response bias. Confirmative factor analyses were performed to test three theoretical models with a varying number of dimensions among those participants who did not demonstrate response bias. The original structure did not fit the data well, but support was found for a three-factor model (with interpersonal manner, communication, and time spent with doctor loading on one factor instead of separate factors) and a one-dimensional model. CONCLUSIONS: The PSQ III seems to be an appropriate measure of cancer patients' satisfaction, with the note that the number of dimensions may vary for different patient groups and/or care settings and that it is important to be aware of response bias.