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Statement of Problem: To develop and evaluate a self-administered health-related quality of life (HRQOL) measure for peripheral neuropathy. Methods: A field test measure of 162 items was developed that included the RAND-36 Health Survey as a generic core and a neuropathy-targeted supplement whose content was driven by results from three focus groups with 22 adults having peripheral neuropathy. It was administered at baseline and at 3- and 6-month follow-ups to 80 adult clinical trial enrollees with diabetic neuropathy. Item reduction and placement into scales, reliability, construct validity, responsiveness, and HRQOL comparisons to a general U.S. population were conducted. Results: The final 97-item instrument includes 16 multi-item scales and 6 single items. Internal consistency reliabilities ranged from 0.67 to 0.93 (median = 0.88); intraclass correlation coefficients for those reporting no change in health between baseline and 3 months ranged from 0.42 to 0.84 (median = 0.77). Factor analysis of scales revealed physical and mental health as the two underlying dimensions. Correlations between selected HRQOL scales and sociodemographic variables were modest; there were more noteworthy associations between HRQOL scales and employment, disability days, and neurologic symptom ratings. Associations of HRQOL with neurologic examination (strength and reflexes) and with electrophysiologic findings were nonsignificant (all p > 0.10). Responsiveness of a physical health summary score relative to a criterion of change in subject's ratings of neuropathy symptom severity yielded a moderate effect size (= 0.60) and a Guyatt statistic exceeding 1.0. Conclusions: Results provide preliminary support for the measure's reliability and validity among adults with diabetic peripheral neuropathy. HRQOL was more strongly associated with symptom ratings than with examination and electrophysiologic test results.

To improve quality of dementia care in a Kaiser Permanente service area through rigorous dissemination of practice guidelines and social worker support for physicians and patients.Pre-post design with practice behavior change assessed by medical record review, and provider and caregiver satisfaction with care assessed by surveys.A diagnostic guideline and later a management guideline were adopted for use by Kaiser Permanente physicians in metropolitan Los Angeles. Physicians received training based on the guidelines, and social workers provided ancillary support. Eighty-three community-dwelling dementia patients and their caregivers were referred to the project by primary care physicians and then were assessed and followed by social workers. Data were abstracted from medical records to determine whether these interventions led to improved quality of care as indicated by adherence to key care processes derived from the adopted dementia guidelines. Chi-square and t tests were applied to compare guideline adherence and satisfaction rates before and after the interventions.Compared with baseline, higher rates of provider and caregiver satisfaction with Kaiser's system of dementia care were found at the postintervention follow-up. There also were significantly higher rates of adherence to several practice guideline-based quality measures: assessment of cognitive status; referrals to the Alzheimer's Association; and assessments of activities of daily living, decision-making capacity, depression, and wandering risk.Quality of primary care for people with dementia can be improved through guideline implementation with care management support by social workers.

To obtain prospective data regarding seizures, anxiety, depression, and quality of life (QOL) outcomes after resective epilepsy surgery.The authors characterized resective epilepsy surgery patients prospectively at yearly intervals for seizure outcome, QOL, anxiety, and depression, using standardized instruments and patient interviews.Of 396 patients who underwent resective surgical procedures, 355 were followed for at least 1 year. Of these, 75% achieved a 1-year remission at some time during follow-up; patients with medial temporal (77%) were more likely than neocortical resections (56%) to achieve remission (p = 0.01). Relapse occurred in 59 (22%) patients who remitted, more often in medial temporal (24%) than neocortical (4%) resected patients (p = 0.02). QOL, anxiety, and depression all improved dramatically within 3 months after surgery (p0.0001), with no significant difference based on seizure outcome. After 3 months, QOL in seizure-free patients further improved gradually, and patients with seizures showed gradual declines. By 12 and 24 months, overall QOL and its epilepsy-targeted and physical health domains were significantly different in the two outcome groups. (Anxiety and depression scores also gradually diverged, with improvements in seizure-free and declines in continued seizure groups, but differences were not significant.)Resective surgery for treatment of epilepsy significantly reduces seizures, most strikingly after medial temporal resection (77% 1 year remission) compared to neocortical resection (56% 1 year remission). Resective epilepsy surgery has a gradual but lasting effect on QOL, but minimal effects on anxiety and depression. Longer follow-up will be essential to determine ultimate seizure, QOL, and psychiatric outcomes of epilepsy surgery.

Multiple studies have examined predictors of seizure outcomes after epilepsy surgery. Most are single-center series with limited sample size. Little information is available about the selection process for surgery and, in particular, the proportion of patients who ultimately have surgery and the characteristics that identify those who do versus those who do not. Such information is necessary for providing the epidemiologic and clinical context in which epilepsy surgery is currently performed in the United States and in other developed countries.An observational cohort of 565 surgical candidates was prospectively recruited from June 1996 through January 2001 at six Northeastern and one Midwestern surgical centers. Standardized eligibility criteria and protocol for presurgical evaluations were used at all seven sites.Three hundred ninety-six (70%) study subjects had resective surgery. Clinical factors such as a well-localized magnetic resonance imaging (MRI) abnormality and consistently localized EEG findings were most strongly associated with having surgery. Of those who underwent intracranial monitoring (189, 34%), 85% went on to have surgery. Race/ethnicity and marital status were marginally associated with having surgery. Age, education, and employment status were not. Demographic factors had little influence over the surgical decision. More than half of the patients had intractable epilepsy for/=10 years and five or more drugs had failed by the time they initiated their surgical evaluation. During the recruitment period, eight new antiepileptic drugs were approved by the Food and Drug Administration for use in the United States and came into increasing use in this study's surgical candidates. Despite the increased availability of new therapeutic options, the proportion that had surgery each year did not fluctuate significantly from year to year. This suggests that, in this group of patients, the new drugs did not provide a substantial therapeutic benefit.Up to 30% of patients who undergo presurgical evaluations for resective epilepsy surgery ultimately do not have this form of surgery. This is a group whose needs are not currently met by available therapies and procedures. Lack of clear localizing evidence appears to be the main reason for not having surgery. To the extent that these data can address the question, they suggest that repeated attempts to control intractable epilepsy with new drugs will not result in sustained seizure control, and eligible patients will proceed to surgery eventually. This is consistent with recent arguments to consider surgery earlier rather than later in the course of epilepsy. Postsurgical follow-up of this group will permit a detailed analysis of presurgical factors that predict the best and worst seizure outcomes.

Background: The cost of acute ischemic events in persons with established atherosclerotic conditions is unknown. Methods: The direct medical costs attributable to secondary acute myocardial infarction (AMI) or ischemic stroke among persons with established atherosclerotic conditions were estimated from 1995–1998 data on 1,143 patients enrolled in US managed care plans. Results: The average 180-day costs attributable to secondary AMI or stroke were estimated as USD 19,056 in the AMI cohort having a private insurance (commercial; n = 344), USD 16,845 in the AMI cohort having government insurance (Medicare, age ≧65 years; n = 200), USD 10,267 for stroke commercial (n = 108), USD 16,280 for stroke Medicare (n = 113), USD 15,224 for peripheral arterial disease commercial (n = 170), and USD 15,182 for peripheral arterial disease Medicare (n = 208). Conclusion: These estimates can be used to study the cost-effectiveness of interventions proven to reduce these secondary events.

This study examined relationships among responsiveness indices for health-related quality of life (HRQOL) measures administered to adults with epilepsy enrolled in an antiepileptic drug trial. The Quality of Life in Epilepsy (QOLIE)-89 was completed at baseline and at a 28-week follow-up. Six responsiveness indices (effect size (ES), standardized response mean (SRM), responsiveness statistic, paired t-test, area under receiver operating characteristic curve or ROC, F-statistic) were calculated for each of the 16 QOLIE-89 scales, using two different external criteria for clinically significant change: (1) attainment of freedom from seizures with altered awareness, and (2) a two-category improvement between baseline and follow-up in a self-rating of the subject's overall condition. Spearman correlations among the six responsiveness indices for the 16 QOLIE-89 scales tended to be moderate to large (Spearman's p = 0.53-1.00; p's0.05 for 29 out of the 30 correlations). Rankings of the 16 scales across the two external criteria for change were similar for the responsiveness statistic (Spearman's p = 0.62; p0.05), but dissimilar for the other responsiveness indices (all p0.05). Both ES and SRM were well predicted by the other indices, except for ROC, using regression modeling. In conclusion, results using different responsiveness indices are comparable for a given external criterion. However, only the responsiveness statistic yielded robust results across two different external criteria. Responsiveness of this HRQOL measure can be reported in terms of previously established benchmarks for ESs, which can be predicted from other indices.

New knowledge on factors associated with stroke clinical outcomes and care costs and a rapid growth in regional restructuring of stroke care services as well as ever-growing incorporation of hospital stroke care quality metrics are noteworthy highlights of outcomes and policy-relevant research on stroke over the last 2 years. ### Factors Associated With Short-Term Outcome During the index stroke admission of patients from a large biracial cohort in the United States, prestroke fatalism—or the belief that events are predetermined or inevitable—and depression were each uniquely associated with all-cause mortality after stroke and with stroke recurrence; optimism and spirituality were not.1 The mechanism for these associations warrants further investigation and may be particularly relevant to those at known elevated stroke risk, who could be targeted for screening. Drilling down into the context of the known association of fever with poor stroke outcomes produced findings that high fever burden—a metric incorporating maximum temperature and number of days with a fever—has over a 6-fold increased odds (after adjustment for patient characteristics) of death or discharge to hospice relative to no fever.2 In another study, an early rise in body temperature—but not admission body temperature—was associated with worse stroke outcome.3 Treatment factors associated with better ischemic stroke outcome include statin therapy within 72 hours of stroke onset (OR of death at 1 year, 0.26; 95% CI, 0.12–0.55).4 Cost-effectiveness of statin use for primary prevention was estimated from …

Background and Purpose — Few data exist for large managed care populations on the occurrence of subsequent acute ischemic events in persons with established atherosclerotic vascular disease. We estimated the occurrence of secondary stroke, acute myocardial infarction (AMI), and vascular deaths among 2 large, managed care samples. Methods — With the use of International Classification of Diseases, Ninth Revision, Clinical Modification codes , patients aged ≥40 years and with stroke, AMI, or peripheral arterial disease (PAD) were identified from administrative data of UnitedHealthcare plans during 1995–1998. Stroke, AMI, and PAD cohorts were identified within a commercial insurance sample and a Medicare sample. Cumulative occurrences of subsequent stroke, AMI, or vascular death were estimated by survival analysis. Results — In the stroke commercial cohort (n=1631; mean age, 62.1 years), cumulative occurrence of subsequent events was 4.2%, 6.5%, 9.8%, and 11.8% at 0.5, 1, 2, and 3 years, respectively; cumulative secondary event occurrence in the AMI commercial cohort (n=6458; mean age, 56.0 years) was 3.5%, 4.8%, 7.3%, and 8.5% and in the PAD commercial cohort (n=5813; mean age, 59.2 years) was 1.5%, 2.8%, 4.8%, and 6.5%, respectively. Cumulative secondary event occurrences were even higher in stroke (n=1518; mean age, 79.5 years), AMI (n=2197; mean age, 76.2 years), and PAD (n=5033; mean age, 76.6 years) cohorts of the Medicare sample: 18.1%, 17.0%, and 8.7%, respectively, at 3 years. More than 75% of each stroke cohort’s secondary events were strokes; more than 75% of each AMI cohort’s secondary events were AMIs. Of the PAD cohorts’ secondary events, 27% to 39% were strokes, 48% to 57% were AMIs, and 13% to 16% were vascular deaths. Conclusions — Among these managed care enrollees with existing atherosclerotic vascular disease, subsequent ischemic events represent a significant symptomatic disease burden. Given these findings, it is very important to determine whether secondary prevention strategies are being effectively used to manage patients with diagnosed atherosclerosis.

Background: Although the Expanded Disability Status Scale (EDSS) remains a widely used scale for evaluating impairments in people with multiple sclerosis (MS), EDSS assessments are infeasible in certain situations. A self-administered version of the EDSS would be potentially usefulif it yielded similar results as the conventional physician-based version. Methods: We developed a self-administered patient questionnaire to obtain ratings of neurologic impairments, and developed algorithms to estimate EDSS scores. We mailed the questionnaires to all new consecutive patients scheduled to be seen at an MS clinic. Questionnaires were completed prior to the visit, and traditional EDSS ratings were made by one of two neurologists at the visit. One hundred and forty-six pairs of patient questionnaires and physician EDSS assessments were obtained. Results: Kappa values for agreement between the physician's EDSS scores and the questionnaire-derived scores were 0.13 (for exact agreement), 0.39 (+0.5 EDSS steps), and 0.56 (+1.0 EDSS steps). A scatterplot showed that agreement was best at EDSS scores 53.0 and 45.0. Better agreement was obtained when patients had a higher level of education, and when the physician was more certain of the diagnosis of MS. Conclusions: While the self-assessed EDSS scores do not agree highly enough to take the place of conventional EDSS scores, they may be sufficient for MS trial screening or for assessing outcomes across broad categories of disability.

Morton SC, Shekelle PG, Adams JL, Bennett C, Dobkin BH, Montgomerie J, Vickrey BG. Antimicrobial prophylaxis for urinary tract infection in persons with spinal cord dysfunction. Arch Phys Med Rehabil 2002;83:129-38. Objective: To assess the benefits and harms of antimicrobial prophylaxis to prevent urinary tract infections (UTIs) in persons with neurogenic bladders caused by spinal cord dysfunction. Data Sources: A broad search strategy with no language restriction was conducted of MEDLINE (1966-January 1998), EMBASE (1974-January 1998), and CINAHL (1982-July 1998) using the general search terms urinary tract, urinary tract infections, bacteriuria, paraplegia, quadriplegia, spinal cord injuries, multiple sclerosis, neurogenic bladder , and neuropathic bladder . Additional articles were identified by experts and by reviewing reference lists of articles obtained from searches. Study Selection: Criteria included human studies of adults and adolescents who had neurogenic bladder due to spinal cord dysfunction; the studies had to address antimicrobial prophylaxis of UTI and include bacteriuria or UTI as an outcome. We excluded any study that was clearly not a controlled trial or that only included children under the age of 13 years. Two reviewers independently abstracted data, and disagreements were resolved by consensus. Data Extraction: Two reviewers independently abstracted data, and disagreements were resolved by consensus. Studies were graded by 1 project investigator according to quality criteria developed by Jadad and Schulz. Data Synthesis: The sizes of the effect of antimicrobial prophylaxis on weekly infection rates from 15 trials that met the inclusion criteria were pooled by using a random effects model. Antimicrobial prophylaxis did not significantly decrease symptomatic infections. Prophylaxis was associated with a reduction in asymptomatic bacteriuria among acute patients ( P P =.06). Prophylaxis resulted in an approximately twofold increase in antimicrobial-resistant bacteria. Conclusions: The regular use of antimicrobial prophylaxis for most patients who have neurogenic bladder caused by spinal cord dysfunction is not supported. A clinically important effect, however, has not been excluded. Future research should focus on randomized trials in those patients who have recurrent UTIs that limit their daily functioning and well-being. © 2002 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation

Background and Purpose — The purpose of the present study was to develop and rate performance measures for hospital-based acute ischemic stroke. Methods — A national multidisciplinary panel of 16 individuals (2 stroke specialists, 2 general neurologists, 2 internists, 2 neuroscience nurses, 2 stroke advocacy organization representatives, 1 stroke rehabilitationist, 1 family practitioner, 1 emergency room physician, 1 neuroradiologist, 1 managed care organization director, and 1 hospital association representative) from 10 medical societies or lay organizations assisted in the development of 44 potential stroke performance measures. We developed evidence summaries for each of the performance measures and graded the level of evidence associated with each measure. The panel received a summary of the literature pertaining to each measure and rated the measures by use of a modified Delphi approach for 6 dimensions of quality, including validity of evidence, feasibility, impact on outcomes, room for improvement, plausibility, and an overall rating (little reason to do, could do, should do, and must do). Results — Highly rated and agreed on performance measures for the overall rating include warfarin in atrial fibrillation, antithrombotics on hospital discharge, carotid imaging in appropriate patients, and use of stroke units. Additional measures notable for high agreement were heparins for deep-vein thrombosis prophylaxis and use of a stroke protocol. Panelists rated time-related thrombolytic measures such as head CT within 25 minutes highly on the room for improvement dimension but low on the overall dimension. Neurologists tended to rate measures lower than did nonneurologists ( P Conclusions — Highly rated and agreed on performance measures exist in all domains of hospital-based stroke care.

Neurologists’ use of ICD-9CM codes in a sample of 181 consecutive, new patients evaluated for dementia by 48 of all 49 neurologists from the Rochester, NY, area over a 1-year period was examined. The specific code for AD, 331.0, was used for only 36.5% of patients judged by the neurologist to have AD as the most likely diagnosis. Other codes used were not inaccurate but would result in lower reimbursement. Variation in coding could affect validity of dementia research using claims data.

Clinical practice guidelines for dementia do not recommend routine neuroimaging but vary in their recommended clinical prediction rules to identify patients who should undergo neuroimaging for potentially reversible causes of dementia.Using a MEDLINE search supplemented by other strategies, we identified studies from January 1, 1983, through December 31, 1998, that evaluated the diagnostic performance of a clinical prediction rule. We calculated the sensitivity and specificity of each rule, then evaluated their diagnostic performance in a hypothetical cohort of 1000 patients with dementia, varying the prevalence of potentially reversible dementia from 1% to 15%.We identified 7 studies that evaluated at least 1 of 6 different clinical prediction rules. Only one rule consistently had high sensitivity (85%) across all studies; none consistently had high specificity (85%). Six of the 7 studies included less than 15 cases of potentially reversible dementia; thus the sensitivity and specificity for each rule had relatively wide confidence intervals. At a 5% prevalence of potentially reversible dementia, all rules had low positive predictive value (15%) in our hypothetical cohort. Depending on the rule, our analysis predicts 6 to 44 of the 50 patients with potentially reversible dementia (5% prevalence in cohort of 1000 patients) would not undergo imaging.There is considerable uncertainty in the evidence underlying clinical prediction rules to identify which patients with dementia should undergo neuroimaging. Application of these rules may miss patients with potentially reversible causes of dementia.

This study surveyed the perceptions about and subjective experience of 1023 people with epilepsy in two community-based samples: one from a national postal survey; the other callers to the Epilepsy Foundation. Response to a mail survey was 49%. In comparison with US Census Bureau norms, respondents had received less education, were less likely to be employed or married, and came from lower income households. Complex partial seizures were the most prevalent seizure type, but a convulsion had occurred in 61%. Fifty percent of respondents reported incomplete control of their seizure disorder, although 25% of these had a seizure in the prior year. Thirteen percent had a longest inter-seizure interval of a year or greater, 37% of 3 months, 22% of 1 month, 10% of 1 week and 4% of 1 day. Respondents listed uncertainty and fear of having a seizure as the worst thing about having epilepsy. Lifestyle, school, driving, and employment limits were also listed as major problems. When asked to rank a list of potential problems, cognitive impairment was ranked highest. These data indicate that ongoing medical and psychosocial problems continue for those with epilepsy in the view of those questioned and their families, even in a sample where the majority report good control of their epilepsy.

Objective: To evaluate the ability of health-related quality of life (HRQOL) measures to detect change over time in persons with epilepsy. Background: The application of HRQOL measures in clinical trials has been limited by a dearth of information regarding their abilities to measure change over time (i.e., their responsiveness). To calculate responsiveness, one must categorize subjects as “changed” or “unchanged” by a priori criteria. Methods: The authors analyzed data collected at baseline and at 28-week follow-up from an antiepileptic drug trial. Two different criteria for classifying subjects as changed or unchanged—one based on seizure frequency (where changed = attainment of seizure freedom) and one based on self-reported overall condition (where changed = improvement in overall condition)—were used. We compared responsiveness indices for two generic (Short Form [SF]-36 and SF-12) and two epilepsy-targeted (Quality of Life in Epilepsy [QOLIE]-89 and QOLIE-31) HRQOL measures. Two scoring procedures for the SF-36, one based on classic test theory and the other on item response theory (IRT), were compared. Results: Effect sizes of the most responsive HRQOL measures were medium to large. The shorter epilepsy-targeted measure had similar responsiveness indices to those of the longer measure. Epilepsy-targeted measures were consistently more responsive than generic measures under the overall condition criterion, but for the seizure freedom criterion, IRT scoring of the SF-36 yielded responsiveness indices comparable to those of the epilepsy-targeted measures. Conclusion: Epilepsy-targeted health-related quality of life measures may be preferable to generic ones in longitudinal studies. Selection of a shorter epilepsy-targeted measure does not compromise responsiveness. Item response theory scoring should be applied to epilepsy-targeted HRQOL measures.

Objective: To address training demands on future neurologists, the American Academy of Neurology (AAN) surveyed its US members as to their views about training the future neurology workforce. Methods: The survey was mailed to 575 US neurologists and 425 residents/fellows. Respondents (54%) were asked about their perceptions of current and future educational programs and settings needed to improve practice competence; issues related to subspecialization; and the role of non-neurologists in providing neurologic care. Views of neurologists were compared with those of neurology residents/fellows. Results: Most respondents support additional training in outpatient, community, and staff model health maintenance organization settings. The majority of respondents oppose a required fifth year of training or a yearly competency examination, but neurologists who have a subspecialty interest and residents/fellows favor elective certification and higher fees by subspecialists. General neurologists oppose these ideas. Most neurologists feel that primary care physicians, nurse practitioners, and physician assistants can manage uncomplicated neurologic problems, although residents/fellows are less willing to accept the role of nonphysician providers for neurologic services. Conclusions: Neurology educational programs should consider addressing deficiencies that today’s practitioners perceive. Increasing subspecialization, although favored by most neurologists, creates a challenge for the neurologic community as neurologists without subspecialty training see this trend as a threat to their livelihood.

To compare general neurologists and MS specialists on patients' clinical characteristics and MS care as perceived by patients with MS.We sampled all adult patients with MS having physician visits over a 2-year period from a Midwestern managed-care organization and from the fee-for-service portion of 23 randomly selected California neurologists' practices. In mid-1996, 694 subjects were mailed questionnaires; 532 (77%) responded. Sociodemographic/clinical characteristics, recent utilization of services/treatments, unmet needs, symptom care, and research participation were measured. Of 502 subjects (94%) who indicated their usual physician providing MS care was a neurologist, 217 (43%) reported having a general neurologist and 285 (57%) reported having an MS specialist. Comparisons between these two groups were adjusted for comorbidity and disease severity.General neurologist and MS specialist patient groups did not differ on any sociodemographic or clinical characteristic except age (p0.05). Although health care utilization generally was similar, higher proportions of the MS specialist group were aware of or had discussed interferon beta-1b (IFNbeta-1b) with their physician (p0.05) and were currently taking it (p0.05); a smaller proportion of the MS specialist group reported stopping it because of side effects (p0.01). Overall, levels of unmet need and care for recent symptoms were similar, but the MS specialist group reported more confidence in their physician/carefulness in listening (p0.05). Twice as many MS specialist subjects had participated in nondrug research (p0.05); drug study participation was similar.Patients' perceptions of their care were similar in most ways for those who designated their main MS provider as a general neurologist compared to an MS specialist; however, care differed in potentially important areas. Prospective, longitudinal studies are needed to measure and relate neurologists' training, experience, knowledge, and MS patient volume with both process and outcome measures of quality of MS care.

The benefit of a new therapy is best judged by data from carefully conducted studies measuring the most relevant outcomes. Until recently, mortality, level of symptomatology, and laboratory and radiologic findings comprised the entire reported outcomes. The impact of treatments on patients’ perceptions of their physical, mental, and social health; driving ability; and employment—outcomes that are the focus of a study by Gilliam et al. in this issue of Neurology 1—were rare. However, over the last decade, there has been a growing interest in developing reliable and valid tools to measure patient-oriented outcomes and applying them in treatment studies.2,3 Patient-oriented outcomes should be viewed as a subset of outcomes useful to the practicing clinician, rather than as distinct from or in conflict with traditional clinical outcomes. Until the early 1990s, treatment studies for epilepsy usually used a 50% reduction in seizure frequency either as the sole outcome or as the primary outcome, accompanied by frequencies of medication side effects. More recently, tools for measuring health-related quality of life have been developed and applied in a growing number of clinical studies of epilepsy, as well as other chronic conditions.4,5 In the Gilliam et al. study of temporal lobectomy for medically refractory epilepsy, patient-oriented outcome measures included a concerns index and a comprehensive measure of health-related quality of life.6,7 These outcome measures were completed by the study participants and reflect their own perspectives. The research methods for developing the concerns index included interviews and meetings with patients, which helped ensure that the measure included areas of concern important …

Background: Educational methods that encourage physicians to adopt practice guidelines are needed. Objective: To evaluate an educational strategy to increase neurologists' adherence to specialty society-endorsed practice recommendations. Design: Randomized, controlled trial. Setting: Six urban regions in New York State. Participants: 417 neurologists. Intervention: The educational strategy promoted six recommendations for evaluation and management of dementia. It included a mailed American Academy of Neurology continuing medical education course, practice-based tools, an interactive evidence-based American Academy of Neurology-sponsored seminar led by local opinion leaders, and follow-up mailings. Measurements: Neurologists' adherence to guidelines was measured by using detailed clinical scenarios mailed to a baseline group 3 months before the intervention and to intervention and control groups 6 months after the intervention. In one region, patients' medical records were reviewed to determine concordance between neurologists' scenario responses and their actual care. Results: Compared with neurologists in the baseline and control groups, neurologists in the intervention group were more adherent to three of the six recommendations: neuroimaging for patients with dementia only when certain criteria are present (odds ratio, 4.1 [95% Cl, 1.9 to 8.9]), referral of all patients with dementia and their families to the Alzheimer's Association (odds ratio, 2.8 [Cl, 1.7 to 4.8]), and encouragement of all patients and their families to enroll in the Alzheimer's Association Safe Return Program (odds ratio, 10.8 [Cl, 3.5 to 33.2]). For the other three recommendations, adherence did not differ between the intervention and the nonintervention groups. Agreement between scenario responses and actual care ranged from 27% to 99% for the six recommendations and was 95% or more for three of the recommendations. Conclusion: A multifaceted educational program can improve physician adoption of practice guidelines.

Background: The American Academy of Neurology (AAN) conducts periodic surveys of its members to profile and monitor changes in the characteristics of US neurologists and their practices.Objective: To assess neurologists’ characteristics, geographic distribution, practice arrangements, professional activities, practice volume, procedures performed, sources of revenue, involvement with managed care and capitation, and other selected topics.Methods: The AAN Member Census survey was sent to US neurologists in the fall of 1996 (response rate = 89%), and the Practice Profile survey was sent to a random sample of 1,986 US neurologists in the summer of 1997 (response rate = 55%) who had completed a Member Census survey. The results of the Practice Profile survey were compared with those of two prior surveys conducted in 1991 to 1992 and 1993 to 1994.Results: The mean age of US neurologists is 48 years, 18% are women, 93% are US citizens, and 24% are international medical graduates. The proportion of neurologists in solo practices, group practices, and medical schools/universities has not changed. The weekly hours worked has remained stable (58 hours), but the time spent in administrative activities has increased (p < 0.001). The average number of patient visits per week to neurologists appears to have increased (p < 0.001), as has the proportion of neurologists performing procedures (p < 0.05). The majority of neurologists have contracts with managed care organizations (82%), and a minority (32%) have capitated payment arrangements. Medicare continues to be the largest source of clinical revenue. Nearly 50% of all respondents have experience in developing clinical practice guidelines or critical pathways, and >20% of respondents employed physician extenders to assist in their practices.Conclusion: Neurologists are spending more time in administrative activities, are performing or interpreting more procedures, and are seeing more patients. Neurologists’ involvement with capitation is comparable with that in a nationally representative sample of physicians, and they are exploring innovative ways, such as developing practice guidelines and using physician extenders, to improve the quality and efficiency of providing neurologic care.

Evidence from large, well-conducted randomized controlled trials (RCTs) can clarify whether a particular treatment is superior to placebo or to a currently accepted alternative approach. Neurologists welcome such data because RCT-level evidence is often not available to guide many clinical decisions we regularly have to make. In general, clinicians do not like uncertainty and would prefer to have evidence. When evidence is lacking, there is a potential for wide variations in practices and for a variety of non-clinical factors to influence treatment decisions.1 In some circumstances, however, new RCT evidence may make clinical decision-making more complex, rather than more straightforward. This situation is illustrated by the findings of Jacoby et al.,2 who report quality-of-life outcomes from a multicenter, randomized trial of immediate vs deferred antiepileptic drug treatment in previously untreated adults presenting with a single or a few unprovoked seizures. To be eligible for the trial, both the treating clinician and the patient had to be uncertain (in equipoise) as to whether to initiate antiepileptic drug treatment. Seizure outcomes were previously reported,3 and that study’s findings …

We surveyed attitudes of US neurologists about the ethical dimensions of managed care by administering a written instrument containing paradigmatic cases portraying conflicts of physicians, patients, and managed care organizations (MCOs). After each case, we assessed neurologists' attitudes by asking them their degree of agreement with a series of statements. We found that neurologists (1) generally were willing to follow clinical practice guidelines if they were created by medical societies; (2) experienced frequent conflicts of interest or conflicts of obligation in the care of their MCO patients; (3) feared legal ramifications of their clinical decisions on MCO patients; (4) were unwilling to employ deception or gaming to achieve what they perceived to be good patient care; (5) believed that their professional prerogatives and autonomy were under attack by MCOs; and (6) felt that the good of their patients should not be sacrificed for the good of society.

OBJECTIVE: Measure the effect of specialty society-developed continuing medical education (CME) on clinical decision making. DESIGN: Randomized controlled trial. SETTING: National sample of neurologists. PARTICIPANTS: Of 492 neurologists randomly selected from an ongoing American Academy of Neurology CME program, 248 were randomized to receive a mailed CME course, and 244 did not receive it. INTERVENTION: A mailed educational course on movement disorders, developed by the specialty society, containing information on diseases and practice recommendations with illustrative case presentations. MEASUREMENTS AND MAIN RESULTS: We assessed adherence to 16 practice recommendations on disease detection, diagnostic test use, and treatments by mailed survey sent to all subjects 4.5 months after the intervention group received the course (73% response rate). The survey contained detailed clinical scenarios to measure self-reported clinical decision making and short open-ended questions to measure factual knowledge. More intervention participants (up to 2.6 times more) than control subjects reported clinical decision making adherent to 9 of the 16 recommendations (p

Because the American Academy of Neurology (AAN) exists to represent the views and needs of neurologists, a mailed survey to a randomly selected sample of 520 US-based, board-certified or board-eligible neurologist members was conducted in early 1995 to determine their attitudes in four key changing areas of the US health care system: (1) provision of neurologic care, (2) neurology workforce, (3) academic research, industry sponsorship, and pharmaceutical issues, and (4) health care delivery systems issues. Frequency distributions of degree of agreement and disagreement with 40 statements regarding issues in these four areas were tabulated for the entire group of 430 respondents (response rate = 83%). Associations between these attitudes and six demographic and practice variables (age, gender, board certification, practice type, degree of managed care, and geographical region) were evaluated in an exploratory analysis. The high response rate to the survey and the similarity in demographic and practice characteristics of respondents to the entire US-based, board-certified or -eligible AAN membership support that the attitudes that were measured are likely to be representative of US neurologists, excluding resident trainees. The survey results show that neurologists are deeply concerned that patients with chronic neurologic disorders are not receiving all the neurologic services they need. Respondents show uncertainty about whether there is a current oversupply of neurologists but generally agree that there are too many neurology residency positions. Neurologists support industry sponsorship of academic medical center research and new drug development. With respect to many of the current mechanisms for health care cost containment, respondents indicate they have little confidence that these strategies are in the best interests of patients or physicians. The survey results confirm that there is no consensus among US neurologists on how to improve today's health care delivery system, and the results suggest that certain attitudes are related to neurologists' demographic and practice characteristics. Since today's health care market is volatile, regular assessments of neurologists' attitudes will be needed to assure that their views are understood and clearly represented by the AAN.NEUROLOGY 1996;47: 279-287

Surgery for intractable epilepsy is a widely used treatment that is not readily assessed by randomised trials. We evaluated the impact of epilepsy surgery on seizures, medication use, employment, and the quality of life in 248 adults and adolescents consecutively referred to one medical centre between 1974 and 1990. Outcomes were determined through self-administered questionnaire and medical record review for 202 surgery and 46 non-surgery patients whose treatment was usually determined by the presence or absence of an epileptogenic focus. Surgery and non-surgery patients differed at baseline only in median monthly seizure frequency (surgery lower than non-surgery). After adjustment for baseline covariates, surgery patients at follow-up had greater decline in average monthly seizure frequency (-11.9 vs - 1.5; difference -10.4, 95% CI -20.5, -0.3) and took fewer antiepileptic medications (average number 1.4 vs 2.0; difference -0.67, 95% CI -0.94, -0.40). Although quality-of-life scores were higher (p < 0.05) with surgery on 5 of 11 scales that were administered only at follow-up, there were no significant differences in employment status or prospectively assessed quality of life. Relative to a non-surgery group, patients treated surgically had better seizure control with less antiepileptic medication. The impact of epilepsy surgery on quality of life and employment needs to be assessed in larger prospective studies.

To examine the relationship of objectively assessed cognitive functioning to self-reported quality of life.Correlational, multiple regression, and factor analytic comparisons of a new self-report quality of life inventory with neuropsychological tests of cognition and mood.Two hundred fifty-seven patients with epilepsy.Twenty-five epilepsy centers and neurology clinics across the United States.A recently developed self-report (ie, Quality of Life in Epilepsy-89 inventory) and objective tests of memory, verbal abilities, spatial functions, psychomotor and cognitive processing speed, cognitive flexibility, and mood.Factors that assessed mood, psychomotor speed, verbal memory, and language correlated significantly with selected scales of the Quality of Life in Epilepsy-89 inventory (P.0001) and were predictive of overall quality of life (P.002 to P.0001). The mood factor showed the highest correlations (r = -.20 to r = -.73) and was the strongest predictor of quality of life in regression analyses (46.7% explained variance, P.0001).Mood may be adversely affected by diminished quality of life, or perceived quality of life may be affected by mood disturbance. Quantitative quality of life assessments can be used in conjunction with formal neuropsychological testing of mood and cognition when evaluating patients with epilepsy.

The need for measures of health-related quality of life (HRQOL) for clinical effectiveness research and for quality of care research, particularly for chronic diseases, is increasingly recognized. We assessed a measure of HRQOL for people with multiple sclerosis, a chronic neurological condition. We used the RAND 36-Item Health Survey 1.0 (aka SF-36) as a generic core measure, to enable comparisons of HRQOL of patients with multiple sclerosis to those of other patient populations and to the general population. To enhance comparisons within groups of multiple sclerosis patients, these items were supplemented with 18 additional items in the areas of health distress (four items), sexual function (four items), satisfaction with sexual function (one item), overall quality of life (two items), cognitive function (four items), energy (one item), pain (one item), and social function (one item). The final measure, the Multiple Sclerosis Quality of Life (MSQOL)-54 Instrument, contains 52 items distributed into 12 scales, and two single items. Internal consistency reliability estimates for the 12 multi-item scales ranged from 0.75 to 0.96 in a sample of 179 patients with multiple sclerosis. Test-retest intraclass correlation coefficients ranged from 0.66 to 0.96. Exploratory factor analysis confirmed two underlying dimensions of physical health and mental health. Construct validity was supported by significant associates between MSQOL-54 scales and degree of multiple sclerosis symptom severity in the prior year, level of ambulation, employment limitations due to health, admission to hospital in the previous year, and depressive symptoms.

Agreement between self reports and proxy reports of quality of life was examined in a sample of 292 patients with epilepsy and their designated proxies. Patients and proxies completed an 89-item Quality of Life Inventory (QOLIE-89), with the items rephrased for the proxy. Results reveal moderate correlations (product-moment r ranging from 0.29 to 0.56 for 17 multi-item scales) between self reports and proxy reports. Agreement was good for measures of function that are directly observable and relatively poor for more subjective measures. Mean scale scores were significantly different between patients and proxies for only five of 17 multi-item scales. Proxy respondents systematically reported better functioning than did patients in three scales assessing cognitive functioning (all p0.001). By contrast, patients reported more positive health perceptions and less seizure distress than proxies. Patient educational attainment correlated inversely with degree of disagreement between patient and proxy reports for six of the 17 QOL scales and for the overall score. In addition, proxy educational attainment correlated positively with agreement for four scales. This study indicates that for group level comparisons, proxy respondents can be substituted for adults with epilepsy having low to moderate seizure frequency. However, for individual level assessments proxies should be used with caution.

Epilepsy surgery is an increasingly common treatment for intractable epilepsy; yet there is no clear consensus among experts on how to report epilepsy surgery outcome. Most published outcome reporting systems focus on seizure frequency and type but differ in how they define clinically distinct outcome categories. We used a reliable and valid measure of self-reported health-related quality of life (HRQOL), the Epilepsy Surgery Inventory (ESI)-55, as an external standard by which to evaluate seven previously published, seizure-based outcome classification systems. The ESI-55 was administered to 133 adults who had previously undergone surgery for intractable epilepsy, and results were linked to data on their seizure occurrence before and after surgery (over the year prior to their HRQOL reports). These 133 patients were classified according to each seizure-based outcome system, and variation in HRQOL across outcome groups was evaluated using analysis of variance. Results reveal noteworthy variation in the extent to which different systems reflect patients' HRQOL at follow-up. We modified existing systems to derive a seizure-based surgery outcome system that most closely reflects HRQOL when applied over the latest 1-year postoperative interval.

Objective: To assess: 1) The most critical symptoms and disease manifestations in FSHD patients; and, 2) The modifying factors that are associated with these symptoms. Background FSHD is a dominantly inherited multisystem disease capable of impairing the physical, mental, and social health of patients. The identification of the symptoms and disease manifestations that are most significant to patients9 health and the relationship between the severity of these manifestations and other patient characteristics are currently lacking. These data are necessary to develop valid disease-specific patient-reported outcome measures for use in future FSHD clinical trials. Design/Methods: A cross-sectional study of 328 genetically or clinically confirmed adult FSHD patients from the National Registry of FSHD patients between September and December 2010. The prevalence and relative impact score of 250 critical symptoms and 15 disease themes previously identified through FSHD qualitative interviews were assessed. Responses were categorized by age, gender, education level, and duration of symptoms. Results: FSHD participants from 46 states provided over 48,000 symptom rating responses to address the relative frequency and importance of each FSHD symptom. Problems with shoulders or arms (96.9%), inability to do activities (94.7%), fatigue (93.8%), back, chest, or abdomen weakness (93.8%), and limitations with mobility or walking (93.6%) were the symptomatic themes with the highest frequency in FSHD. Participants identified problems with shoulders or arms and limitations with mobility or walking as the symptomatic themes with the greatest impact on their lives. Significant associations were found between demographic data and the prevalence and relative impact of specific FSHD symptoms on patients9 lives. Conclusions: In this national cross-sectional study patients with FSHD identified the symptoms of highest frequency and greatest impact. These symptoms, some under-recognized, vary based on patient age, gender, and duration of symptoms. Fortunately many, perhaps all symptoms, may be amenable to future therapeutic intervention. Supported by: The National Institute of Arthritis and Musculoskeletal and Skin Disorders (1K23AR055947), the NIH supported Senator Paul D. Wellstone Muscular Dystrophy Cooperative Research Center (U54NS48843-01), the Muscular Dystrophy Association, and the University of Rochester Clinical Translational Science Institute. Disclosure: Dr. Heatwole has nothing to disclose. Dr. Bode has nothing to disclose. Dr. Martens has nothing to disclose. Dr. McDermott has received personal compensation for activities with Teva Neuroscience, Smith and Nephew, Inc., Synosia, Inc., and Impax Pharmaceuticals. Dr. McDermott has received research support from Medivation, Inc., NeuroSearch Sweden AB, Boehringer Ingelheim Pharmaceuticals, Inc., and Pfizer Inc. Dr. Moxley has nothing to disclose. Dr. Quinn has nothing to disclose. Dr. Tawil has nothing to disclose. Dr. Rothrock has nothing to disclose. Dr. Vickrey has received personal compensation for activities with EMD Serono. Dr. Victorson has nothing to disclose. Dr. Johnson has nothing to disclose.

Objective: To assess retrospective reports of injuries among a population-based cohort of adolescents diagnosed with epilepsy nine years earlier, and compare to that of sibling controls. Background Persons with refractory epilepsy are at increased risk for injuries, but occurrence amongst a representative cohort of children with epilepsy (CWE) including uncomplicated epilepsy (CWUE) at long-term follow-up is unknown. Design/Methods: In a prospective, community-based study of newly diagnosed childhood-onset epilepsy, CWE (n=501) and sibling controls reported whether they had EVER (includes before and after epilepsy diagnosis) experienced certain types of injuries “serious enough to require medical attention,” at 9-year follow-up. Injury rates amongst CWUE (normal neurological exam and IQ≥80) were compared with matched sibling controls (n=210 pairs). Results: Mean age of epilepsy onset was 5.8 years; 49.7% were female. At follow-up, CWE (n=501) were 15.3 years old; 56.9% were ≥5-years seizure-free, 37.5% were taking ≥1 anti-epileptic drug, 76.5% had an IQ≥80 and 87.6% had a normal neurological exam. 49.1% of CWE experienced any injury, of whom 9.3% required surgery/hospitalization and 17.1% had an injury due to a seizure; CWUE (n=368) had lower rates of injury due to a seizure versus those with complicated epilepsy (n=133) (13.6% vs. 27.4%; p≤0.01). Rates of any injury by type (not mutually exclusive) amongst all CWE were: 8% burns/scalds, 25.2% fractures, 24.4% head, 8.4% dental and 10.2% other. CWUE and matched controls (n=210) had a similar rate of any injury (overall and by type) except CWUE had a higher rate of any head injury (30.0% vs. 19.5%; p Conclusions: While nearly half of CWE report ever having an injury requiring medical attention, the rate of injuries amongst CWUE was comparable to that of matched sibling controls, except for having more head injuries. The majority of CWE did not require hospitalization/surgery nor experienced the injury due to a seizure. Supported by: NINDS-R37-NS31146 (PI-Berg). Disclosure: Dr. Baca has nothing to disclose. Dr. Vickrey has received personal compensation for activities with EMD Serono. Dr. Vassar has nothing to disclose. Dr. Cook has nothing to disclose. Dr. Berg has received personal compensation for activities with BIAL as a speaker.

This study determined differences in clinical-pathologic characteristics of intractable temporal lobe epilepsy (TLE) patients whose mechanism of cerebral injury and chronic seizures involved a prior history of cerebral trauma compared to those with non-traumatic initial injuries. TLE patients (n = 120) from a single epilepsy center were retrospectively and blindly catalogued into pathogenic groups (independent variables) based on if there was a significant Birth injury (n = 11) or Cerebral trauma (n = 26). These two 'trauma' categories were compared to TLE patients with non-seizure non-trauma histories (Non-Sz/Non-Trauma; n = 17), or a first Prolonged seizure (n = 66). The four groups were compared for differences in the time course of their clinical injuries and seizures, quantified hippocampal neuron counts, other temporal neocortical pathologies, and seizure outcomes (dependent variables). Between group statistically significant (at least P0.05) results showed: (1) In Birth injury, 33% had Ammon's Horn (AH) neuron loss under 50%, 54% had other temporal neocortical pathologies, they showed the most CA4 neuron loss, and the worse seizure outcomes. (2) Cerebral trauma were older when injured, 29% had AH loss under 50%, 50% showed other pathologies, and they had the best seizure outcomes. (3) Non-Sz/Non-Trauma showed the least AH and CA4 neuron losses, only 12% had other temporal pathologies, and they had seizure outcomes that were intermediate. (4) Prolonged seizure showed the youngest age of habitual TLE onsets, the greatest AH, CA1, and prosubiculum neuron loss, only 11% had other temporal pathologies, and their seizure outcomes were excellent. These results indicate that in intractable surgically treated TLE, a history of cerebral trauma or birth injury as the pathogenic mechanism of their seizures show different clinical-pathologic features and seizure outcomes compared to non-trauma patients. This supports the notion that in TLE there are different pathogenic mechanisms associated with different types of initial injuries and that patients will have different responses to surgical therapy.

Horacio Chiong-Rivero1, Gery W Ryan2, Charles Flippen3, Yvette Bordelon3, Nicholas R Szumski4, Theresa A Zesiewicz5, Stefanie Vassar3,6, Beverly Weidmer2, Rosa Elena García2, Melissa Bradley2, Barbara G Vickrey2,3,61Department of Neurology, Los Angeles County and University of South California Medical Center, Los Angeles, CA, USA; 2RAND Corporation, Santa Monica, CA, USA; 3Department of Neurology, David Geffen School of Medicine at University of California Los Angeles, Los Angeles, CA, USA; 4Department of Neurology, Cedars-Sinai Medical Center, Los Angeles, CA, USA; 5Department of Neurology, University of South Florida, Tampa, FL, USA; 6VA Greater Los Angeles Healthcare System, Parkinson’s Disease Research, Education, and Clinical Center, Los Angeles, CA, USABackground: Parkinson’s disease (PD) is a neurodegenerative disease that significantly affects patients’ quality of life. The myriad complexities of the disease, including its nonmotor manifestations, are beginning to be more fully appreciated, particularly in regard to the emotional and social effects of PD. Considering that both motor and nonmotor manifestations of PD significantly influence the health outcomes and conditions of patients, and their health-related quality of life (HRQOL), we collected qualitative data from patients with PD, as well as caregivers of persons with PD having cognitive impairment, to assess their perceptions of the impact of PD on HRQOL.Methods: We conducted eight focus groups and five one-on-one interviews in English and in Spanish between March 2007 and February 2008. Three of the focus groups were conducted with a total of 15 caregivers; the remaining focus groups and all interviews were conducted with 48 PD patients. Study participants were asked about the challenges that PD patients may experience, particularly pertaining to physical functioning, the impact of PD on their emotional status, and social functioning.Results: Based on analysis of the transcripts, we identified seven overarching domains or themes that reflect patients’ perspectives on living with PD, ie, physical functioning, social and role functioning, emotional impact, fears and uncertainty about the future, stigma and other feelings about PD, coping mechanisms, and benefits of having PD.Conclusion: We underscore the salient aspects regarding the physical effects of PD along with its nonphysical ramifications, offering perspectives into the experience of PD and suggestions on how PD patients and their caregivers may cope with the disease.Keywords: focus groups, qualitative, neurodegenerative, health-related quality of life

Use of preventive health services is affected by factors such as patient demographics, clinical characteristics, type of provider, and type of healthcare system.1 Although people with multiple sclerosis may have impaired mobility, their lifespans are similar to age matched population controls. They therefore need standard preventive services to prevent early mortality. We evaluated the relation between mobility and use of preventive services in women with multiple sclerosis. In 1996, we sent questionnaires to 1164 adults with multiple sclerosis who had received outpatient care in 1993 or 1994 from one of three systems of health care (two forms of managed care and fee for service insurance) in two regions of the United States.2 The overall response rate was 80% (930/1164). We report here survey analyses from the 713 women respondents. We collected self reported rates of cervical smear testing, mammography, and breast examination (if over age 50), blood pressure checks, cholesterol screening, and physician …

32 Background: Little data exist on the incidence of subsequent acute ischemic events in persons with established atherosclerotic vascular disease in managed care plans. Objective: To estimate the incidence of secondary stroke and myocardial infarction (MI) over 3 years. Methods: Patients were identified as having atherosclerotic vascular disease (either stroke, MI, or peripheral arterial disease {PAD}) using administrative data from 11 UnitedHealthcare plans (3 with Medicare) from 1995–98. The stroke cohort includes patients ≥ 40 years old hospitalized with a primary or secondary ICD-9-CM code of either 434 or 436, and length of stay ≥ 1 day. Patients with a carotid endarterectomy or claims consistent with cardioembolic strokes were excluded. Persons age ≥ 40 with a primary ICD-9-CM code of 410 and a length of stay ≥ 2 days were included in the MI cohort. The PAD cohort included patients ≥ 40 with a hospital admission or an office visit with an ICD-9-CM code of 440.2x or 440.3. Cumulative incidences of subsequent stroke or MI were estimated for each cohort using Kaplan-Meier survival analysis. Results: For stroke, MI, and PAD cohorts, 3527 (49% Medicare), 9039 (26% Medicare), and 10,925 (46% Medicare) members were identified, respectively. Nearly 96% of MI and 89% of stroke patients were discharged alive. During an average follow-up period of 12 months in the stroke cohort, the cumulative incidences of stroke or MI were 4%, 7%, 12% and 14% at 0.5, 1, 2, and 3 years, respectively. Incidences in the MI cohort were 4%, 6%, 8% and 11% at 0.5, 1, 2, and 3 years (mean follow-up=15 months). In the PAD cohort with a mean follow-up of 15 months, the cumulative percentages with subsequent AMI or stroke were 2%, 3%, 5% and 8% after 0.5, 1, 2, and 3 years. Stroke accounted for 79%, 16%, and 39% of the secondary events in the stroke, MI, and PAD cohorts, respectively. Conclusions: Among persons with atherosclerotic vascular disease enrolled in managed care plans around the US, the incidence of subsequent ischemic events is consistent with a significant burden of symptomatic disease. Among stroke patients who have a subsequent ischemic event, stroke is the secondary event in the vast majority of cases.

At the start of the 2008 American Epilepsy Society (AES) Presidential Symposium, the room resonated with “Leader of the Pack” as a video of Susan and Dennis Spencer in helmets and leather jackets on motorcycle appeared on-screen. The Spencers loved motorcycle touring, and that is what they were doing in Utah when Susan suddenly took ill and passed away on May 21, 2009. Susan Spencer was Professor of Neurology and Neurosurgery at Yale University School of Medicine where she and her husband, Dennis Spencer, founded and directed the world-renowned Yale Epilepsy Surgery program. She entered academic neurology at a time when very few other women did, and she achieved success in every aspect of her career. Susan was …

Summary Purpose: Analyze determinates of employment changes from before to 2 years after surgery in refractory focal epilepsy patients. Methods: Preoperative employment was prospectively assessed in 375 adults with refractory epilepsy. Two-year postsurgical employment status was obtained for 299; factors potentially associated with employment status change among subgroups unemployed and employed at baseline were analyzed. Results: Presurgical employment status was full-time (n = 148, 39.5%), part-time (n = 26, 6.9%), disabled and unemployed (n = 100, 26.7%), unemployed (n = 44, 11.7%), and other (n = 57, 15.2%). Those with and without 2-year follow-up did not differ on baseline characteristics (all p > 0.10). Two years after surgery, 42.8% were employed full-time and 12.4%, part-time. Among those unemployed before surgery, better seizure outcome was associated with gaining employment at 2 years (p = 0.03). Conclusions: Net employment gains were modest 2 years after surgery and higher with better seizure outcomes, reinforcing the need for optimizing surgical candidate selection, long-term follow-up studies, and postsurgical vocational rehabilitation.

Objective: To examine the frequency of driving an automobile and characteristics associated with driving in individuals with refractory localization-related epilepsy. Background: Driving is generally restricted and monitored in people with epilepsy. Little is known about the frequency of driving and subsequent accidents specifically in individuals with uncontrolled epilepsy. Methods: In an ongoing, prospective, multicenter study of resective epilepsy surgery, individuals were interviewed when they presented for surgical evaluation. Analyses were conducted using chi-square, t-tests, and multiple logistic regression. Results: Of 367 eligible participants, 115 (31.3%) had driven in the last year, most on at least a weekly basis. In a multivariable analysis, factors associated with an increased likelihood of driving were having a current license (OR = 10.71, p Conclusions: Despite restrictions, almost one third of individuals with refractory epilepsy drive. Understanding why they do may help identify means of modifying this behavior or identifying services that, if provided, would help people with uncontrolled epilepsy forego driving.

Objective: The American Academy of Neurology (AAN) surveyed the attitudes, behavior, and knowledge of its members regarding care at the end of life. Three groups of AAN members were surveyed: neuro-oncologists, ALS specialists, and a representative sample of US neurologists. Methods: The survey presented two clinical scenarios involving end-of-life care. Neurologists were asked a series of questions to assess their knowledge of existing medical, ethical, and legal guidelines; their willingness to participate in physician-assisted suicide (PAS) or carry out voluntary euthanasia (VE); and their general attitudes regarding end-of-life care. Results: Neurologists support a patient’s right to refuse life-sustaining treatment, but many believe that they are killing their patients in supporting such refusals. Thirty-seven percent think it is illegal to administer analgesics in doses that risk respiratory depression to the point of death. Forty percent believe they should obtain legal counsel when considering stopping life-sustaining treatment. One half believe that PAS should be made explicitly legal by statute for terminally ill patients. Under current law, 13% would participate in PAS and 4% would carry out VE; if those procedures were legalized, 44% would participate in PAS and 28% in VE. Approximately one third believe that physicians have the same ethical duty to honor a terminally ill patient’s request for PAS as they do to honor a such a patient’s refusal of life-sustaining therapy. Conclusions: There is a gap between established medical, legal, and ethical guidelines for the care of dying patients and the beliefs and practices of many neurologists, suggesting a need for graduate and postgraduate education programs in the principles and practices of palliative care medicine. Many neurologists would participate in PAS and carry out VE if legalized.