Epilepsy in Canadian households: The financial pinch.

BACKGROUND: It has long been recognized that epilepsy has a substantial economic impact on populations including health care costs and employment impact. There is a paucity of data on the individual and household impact of epilepsy on financial income. METHODS: Canadian data on households containing persons with epilepsy were derived from the National Population Health Survey of Neurological Conditions within the Canadian Community Health Survey (CCHS), a Canadian population-based cross-sectional survey that collects information related to health status (2010-2011). We determined the number of households in Canada reporting at least one member with epilepsy. We examined the difference in reported household income between households reporting at least one member with epilepsy with those not reporting any members with epilepsy. We then developed a model of reported household income within Canada in order to adjust the estimated impact on household income of having at least one member with epilepsy. RESULTS: In 2010-2011, 122,911 respondents to the CCHS identified 1,254 households containing individuals with epilepsy, representing âˆ¼ 594,200 households in Canada (95 % CI: 534,900-650,500). These respondents reported that household income for households with members with epilepsy was reduced by CDN$ 14,000 when compared to the mean reported household income of CDN$ 83,000, (p < 0.001). In a model of income, the adjusted impact of a household member with epilepsy was CDN$ 14,700 (95 % CI: 10,000-19,500). CONCLUSION: The financial impact on Canadian households of persons with epilepsy is profound. While we can only speculate on the rationale driving this, the differential in average household income in households living with an individual with epilepsy is clear. This places an additional financial burden on persons with epilepsy (PWE) who may already face substantial medication, health care and caregiver costs.

Metabolic cost of lateral stabilization during walking in people with incomplete spinal cord injury.

People with incomplete spinal cord injury (iSCI) expend considerable energy to walk, which can lead to rapid fatigue and limit community ambulation. Selecting locomotor patterns that enhance lateral stability may contribute to this population's elevated cost of transport. The goal of the current study was to quantify the metabolic energy demands of maintaining lateral stability during gait in people with iSCI. To quantify this metabolic cost, we observed ten individuals with iSCI walking with and without external lateral stabilization. We hypothesized that with external lateral stabilization, people with iSCI would adapt their gait by decreasing step width, which would correspond with a substantial decrease in cost of transport. Our findings support this hypothesis. Subjects significantly (p<0.05) decreased step width by 22%, step width variability by 18%, and minimum lateral margin of stability by 25% when they walked with external lateral stabilization compared to unassisted walking. Metabolic cost of transport also decreased significantly (p<0.05) by 10% with external lateral stabilization. These findings suggest that this population is capable of adapting their gait to meet changing demands placed on balance. The percent reduction in cost of transport when walking with external lateral stabilization was strongly correlated with functional impairment level as assessed by subjects' scores on the Berg Balance Scale (r=0.778) and lower extremity motor score (r=0.728). These relationships suggest that as functional balance and strength decrease, the amount of metabolic energy used to maintain lateral stability during gait will increase.

Are YouTube seizure videos misleading? Neurologists do not always agree.

The internet has become the first stop for the public and patients to seek health-related information. Video-sharing websites are particularly important sources of information for those seeking answers about seizures and epilepsy. Because of the widespread popularity of YouTube, we sought to explore whether a seizure diagnosis and classification could reliably be applied. All videos related to "seizures" were reviewed, and irrelevant videos were excluded. The remaining 162 nonduplicate videos were analyzed by 4 independent pediatric neurologists who classified the events as epilepsy seizures, nonepileptic seizures, or indeterminate. Videos designated as epilepsy seizures were then classified into focal, generalized, or unclassified. At least 3 of the 4 reviewers agreed that 35% of the videos showed that the events were "epilepsy seizures", at least 3 of the 4 reviewers agreed that 28% of the videos demonstrated that the events were "nonepileptic seizures", and there was good agreement that 7% of the videos showed that the event was "indeterminate". Overall, interrater agreement was moderate at k=0.57 for epilepsy seizures and k=0.43 for nonepileptic seizures. For seizure classification, reviewer agreement was greatest for "generalized seizures" (k=0.45) and intermediate for "focal seizures" (k=0.27), and there was no agreement for unclassified events (k=0.026, p=0.2). Overall, neurology reviewer agreement suggests that only approximately one-third of the videos designated as "seizures" on the most popular video-sharing website, YouTube, definitely depict a seizure. Caution should be exercised in the use of such online video media for accessing educational or self-diagnosis aids for seizures.

Epilepsy in the Twitter era: a need to re-tweet the way we think about seizures.

Seizures have long been associated with misconceptions and stigma. Exponential growth in Internet use has seen the rapid expansion of social media, such as Twitter, for health promotion. In view of the popularity of Twitter, we sought to explore how seizures are being portrayed on this social networking website and to consider its potential for information dissemination. A 48-hour Twitter search was used as a preliminary data set to determine an appropriate classification scheme of "seizure"-related posts ("tweets"). Analysis was then conducted using "seizure" tweets from a 7-consecutive day sample period. Tweets were analyzed and coded by two independent reviewers. Predominant categories were Metaphorical (32%), Personal Accounts (31%), Informative (12%), and Ridicule/Joke (9%). This study supports the notion that stigmatization associated with seizures continues to flourish, as 41% of "seizure" tweets were derogatory in nature. Although Twitter could be used to disseminate accurate information on seizures and epilepsy, this study suggests that it is currently propagating negative attitudes toward seizures with potential for fueling stigma. In recent years there have been significant advancements in technology offering many new methods of sharing information. Social networking sites allow real-time communication while providing the opportunity for exchange of information and opinions. Twitter, a website launched in 2006, allows users to communicate through "tweets" limited to 140 characters. Twitter's popularity has drastically increased since its inception, with approximately 110 million tweets per day from 200 million users worldwide, as of January 2011 (http://blogs.forbes.com/oliverchiang/2011/01/19/twitter-hits-nearly-200m-users-110m-tweets-per-day-focuses-on-global-expansion/). Such social media facilitate communication about an array of health-related topics including seizures and epilepsy.

Self-reported headache frequency in Canadian adolescents: validation and follow-up.

OBJECTIVE: To validate our previous estimates of the prevalence of frequent headache and associated factors in a new sample of 12- to 13-year-old adolescent Canadians, and to explore if estimates of the prevalence of frequent headache and associated factors remain stable within the original cohort after a two-year interval. METHODS: We analyzed the self-administered questionnaire microdata files of the National Longitudinal Survey of Children and Youth (NLSCY: 1998-1999). 1694 respondents representing 724,400 youth aged 12 to 13 years were used to validate the prevalence in our initial estimates. From the initial cohort, 1764 respondents representing 819,600 youth, now aged 14 to 15 years, were used to examine whether frequent headache prevalence or associated factors had changed in the intervening two years. RESULTS: Among the analyzed individuals, 26.3% of 12- to 13-year olds and 31.2% of 14- to 15-year olds reported frequent headaches of "about once a week" or more often (P= .001). Our previous study of the NLSCY: 1996-1997 found a prevalence of 26.6% in 12- to 13-year olds. We previously identified 22 risk factors, of which 15 were replicated and one proxy was available within this iteration of the survey. For the 12- to 13-year olds, 14/16 were associated (P < .01, chi-square) with frequent headaches. For the initial cohort, now 14- to 15-year olds, 15/16 risk factors remained associated (P < .01, chi-square) with an increased risk of headaches. CONCLUSIONS: Our estimates of frequent headache prevalence are reliable and consistent in two large nationally representative cohorts of 12- to 13-year olds. In the first of these groups there was an increase in prevalence over 2 years as adolescence progresses. Our identified risk factors for frequent headaches have been validated within another cohort and are maintained as the cohort ages.

Prevalence of reported migraine headaches in Canadian adolescents.

OBJECTIVE: To examine self-reported prevalence data for migraine among adolescent Canadians and to explore how reported migraine treatment varies by age. METHODS: We analyzed the microdata files of the Canadian National Population Health Survey (1996-1997). Respondents reported whether they had "migraine headaches diagnosed by a health professional". They also reported whether they received "any treatment or medication for migraine headaches", with treatments subdivided into drug, diet or "other". RESULTS: 99.9% of 173,216 eligible respondents reported whether they had migraine headaches. Migraine was reported by 2.4% of Canadian youth aged 12-14 years and by 5.0% of 15-19 year-olds compared to 7.2% of adults aged > or = 20 years of age (p< 0.0001, chi-square). Active treatment was used by 51.0% - higher by females (53.1%) than males (44.7%) (p<0.0001 chi-square). Treatment was used by 45.1% of 12-14 year-olds, by 45.7% of 15-19 year-olds and by 51.5% of those > or = 20 years (p=0.0027). The nature of the active treatment choice (drug, diet or other) did not significantly vary within the age groups studied. CONCLUSIONS: We present robust estimates of self-report diagnosed migraine prevalence, derived from a large nationally representative population survey. Estimates of the prevalence of active treatment for migraine provide insight into the burden of migraine within this population.

Self-reported headache frequency and features associated with frequent headaches in Canadian young adolescents.

OBJECTIVE: To explore the associated factors for frequent headache among young adolescent Canadians. METHODS: We analyzed the self-administered questionnaire microdata files of the National Longitudinal Survey of Children and Youth (NLSCY: 1996 to 1997). Two thousand and ninety respondents representing 793,100 Canadian youth aged 12 to 13 years were asked how often they had headaches in the previous 6 months. RESULTS: Of the 2090 adolescents, 1998 (96%) responded. Frequent headaches of "about once a week" or more often were reported by 26.6% of them aged 12 to 13 years (95% CI: 24.2, 28.6). Frequent headaches appear to be associated with a plethora of risk factors germane to the life experience of these young adolescents. All factors were significant at P <.0001 by chi-square analysis and can be loosely categorized as school-related, lifestyle-related, or involving mental health. A multivariate Classification and Regression Tree (CART) analysis models frequent headaches on a depression scale, a self-esteem scale, and ever having smoked, with 60% sensitivity, and 65% specificity. CONCLUSIONS: The NLSCY reveals a remarkable insight into headache frequency and the life experience of Canada's young adolescents with frequent headaches.

Muscle activation during unilateral stepping occurs in the nonstepping limb of humans with clinically complete spinal cord injury.

STUDY DESIGN: Comparison of different kinematic and loading conditions on muscle activation in clinically complete spinal cord-injured subjects stepping unilaterally with manual assistance. OBJECTIVE: To determine if rhythmic lower limb loading or movement could produce rhythmic muscle activation in the nonstepping limb of subjects with clinically complete spinal cord injury (SCI). SETTING: Human Locomotion Research Center, Department of Neurology, University of California, Los Angeles, USA. METHODS: We recorded electromyography, joint kinematics, and vertical ground reaction forces as four subjects with clinically complete SCI stepped with manual assistance and partial bodyweight support. For all trials, one limb continuously stepped while the other limb underwent different conditions, including rhythmic lower limb loading in an extended position without limb movement, rhythmic lower limb movement similar to stepping without limb loading, and no lower limb loading or movement with the leg in an extended or flexed position. RESULTS: Three subjects displayed rhythmic muscle activity in the nonstepping limb for trials with rhythmic limb loading, but no limb movement. One subject displayed rhythmic muscle activity in the nonstepping limb for trials without ipsilateral limb loading or movement. The rhythmic muscle activity in the nonstepping limb was similar to the rhythmic muscle activity during bilateral stepping. CONCLUSIONS: The human spinal cord can use sensory information about ipsilateral limb loading to increase muscle activation even when there is no limb movement. The results also indicate that movement and loading in one limb can produce rhythmic muscle activity in the other limb even when it is stationary and unloaded. These findings emphasize the importance of optimizing load-related and contralateral sensory input during gait rehabilitation after SCI.

Vertebral fractures in boys with Duchenne muscular dystrophy.

Osteoporosis causes significant morbidity for boys with Duchenne muscular dystrophy. Corticosteroid therapy given to prolong mobility may increase the rate of osteoporosis and risk of fracture. This study of 33 boys with Duchenne muscular dystrophy determined retrospectively the incidence of vertebral fractures particularly after initiation of corticosteroids. A latency period of 40 months after commencement of steroids occurred before the first vertebral fracture appeared. However, by 100 months of treatment approximately 75% had sustained a vertebral fracture.

Botulinum toxin A as a treatment for excessive drooling in children.

Drooling is problematic for some neurologically impaired children. Botulinum toxin A injection to salivary glands has effectively reduced drooling in adults but has only recently been used to treat children. This was a preliminary study to determine the efficacy and safety of botulinum toxin in children. Children identified as having severe daily drooling were enrolled. The preinjection assessment included measurement of the amount and frequency of drool. Each parotid gland was injected with 5 U of botulinum toxin A. Follow-up was for a minimum of 16 weeks. Nine children were enrolled, 4-17 years of age. All children had moderate or severe mental retardation. At week 4, all patients had a reduced drooling frequency and eight of nine patients had a reduction in the weight of saliva. Overall, five of nine parents (55%) deemed the treatment successful. This preliminary study demonstrates that botulinum toxin A is a relatively effective treatment for some children with significant drooling without serious side effects.

Duchenne muscular dystrophy--parental perceptions.

Quality of life and availability of services are important for boys with Duchenne muscular dystrophy (DMD) and their families. Families attending our neuromuscular clinic completed a questionnaire on parental perception regarding the importance of services, health issues, and quality of life issues both "now" and "in the future." Eighty-nine percent of the families (31/35) completed questionnaires. Services and health issues related to prolonging ambulation were most important, especially for the parents of younger boys. Mental health issues such as social isolation, anger, and depression were very important, particularly for the families of older boys and were anticipated to be more important in the future. Pediatricians should be aware of both the immediate needs of families to meet the physical and emotional challenges of DMD and the increasing requirement to address the social needs of these patients and their families as the boys become older.

Parents of children with epilepsy are optimistic for their children's health, but relatively pessimistic when compared with other parents.

We examined parents' perceived risk of their children encountering 10 general health conditions and 10 epilepsy-specific health problems using a standard optimistic bias question with standard responses. "Compared to other children of similar age, my child's chance of getting [problem, e.g., kidney disease] in the future is" (on a 7-point response scale) "much below average em leader average em leader much above average." "Pessimistic" parents were defined as those whose mean answers exceeded average risk. Parents demonstrated an optimistic bias for most health risks. For all the general health risks, the parents of children with epilepsy showed less optimistic bias (or pessimism) (P=0.001). Parents of children with epilepsy were much more likely to be "pessimistic" about future health risks (odds ratio 3.0, 95% CI: 1.1, 8.4) but showed an optimistic bias for the epilepsy-specific health risks. Parents of children with epilepsy appear to judge their children as more vulnerable to additional health problems when compared with parents of healthy children.

Treatment of febrile seizures: the influence of treatment efficacy and side-effect profile on value to parents.

OBJECTIVES: We examined parents' perception of the value of treatments designed to reduce the risk of febrile seizure recurrence. STUDY DESIGN: The families of 42 children with febrile seizures were recruited after pediatric or neuropediatric consultation. A mail questionnaire addressed the family's willingness to pay for a hypothetical treatment for febrile seizures with risk reductions for future febrile seizures of 25%, 50%, 75%, and 100%. The hypothetical clinical scenario was then modified to include the side- effect profiles of either daily phenobarbital or valproic acid, or intermittent diazepam prophylaxis. Covariates included the nature of the child's febrile seizure(s), parents' familiarity with febrile seizures, experiences at the time of febrile seizures or with medication side effects, education and income, and mastery and trait anxiety. RESULTS: Thirty-eight parents, representing 22 of 42 families, completed questionnaires. There was a dramatic inflection in parents' willingness to pay for 100% risk reduction as opposed to 75% or lower risk reductions. Introduction of side effects dramatically reduced the value attached to each level of treatment benefit. Nevertheless, a few parents (3/38) would pay "as much as it takes" to be rid of their child's recurrence risk. CONCLUSIONS: Given the range of value assigned to prophylactic medication for febrile seizures, management strategies for children with febrile seizures must be responsive to the needs and values of individual families.

Irritability in Krabbe's disease: dramatic response to low-dose morphine.

Krabbe's disease is characterized by normal neonatal development with subsequent regression and profound, medically intractable irritability. Two female infants presented at 5 months of age with increasing irritability, abnormal motor control, and developmental regression. Investigations confirmed the diagnosis of Krabbe's disease. Maximal treatment of gastroesophageal reflux and nitrazepam 0.1 mg/kg by mouth three times daily were unsuccessful in controlling irritability. Morphine was initiated and titrated to 0.06 mg/kg by mouth every 6 hours in Patient 1 and 0.1 mg/kg by mouth every 8 hours in Patient 2, resulting in remarkably successful control of irritability. The diagnosis of Krabbe's disease is devastating for families and is compounded by the marked irritability. Management is difficult, but in these two infants, irritability was successfully controlled with low-dose morphine.

Brain activity and cognitive status in pediatric patients: development of a clinical assessment protocol.

The purpose of this study was to test the validity of a new computerized task to assess children's cognitive problem-solving skills using the brain event-related potentials. This event-related potential-computerized cognitive problem-solving task does not require a child to give a verbal or motor (ie, pointing) response. The event-related potential waveforms were recorded from 20 typically developing children. Two nonverbal, problem-solving tasks (tasks 1 and 2) were developed for each of two age groups (5 and 6 years). For each task, single pictures, taken from an existing standardized test of nonverbal problem solving, were individually and sequentially presented on a computer screen. One of the seven pictures was classified as incongruent or outside category; it did not belong with the other pictures. As predicted, the event-related potential amplitudes were significantly larger to the outside- versus within-category pictures. This effect was found for tasks 1 and 2 for the 5- and 6-year-old children. Children as young as 5 years of age reliably exhibit brain activity, which can be used to infer cognitive problem-solving skill. This assessment paradigm may eventually serve as a clinically useful adjunct to a thorough neurologic and neurodevelopmental assessment of selected pediatric populations, such as those presenting with moderate-severe cerebral palsy whose expressive language and motor skills are notably impaired.

The epidemiology of infantile spasms.

OBJECTIVE: The aim of this study was to estimate population based incidence rates for infantile spasms (IS) and to study our clinical impression that the incidence of IS has recently decreased in the Canadian Provinces of Nova Scotia and Prince Edward Island. METHODS: Birth cohorts from 1978 to 1998, identified through the hospital health records, EEG records and physician computerized databases, were followed for two years for the development of IS. Disease incidence rates were calculated using denominators derived from Statistics Canada's reported annual live birth rates. RESULTS: The inclusion criteria for IS were fulfilled by 75 patients. The overall incidence of IS was 30.7/100,000 live births (95% Cl 24.3, 38.8). Etiologic classification was symptomatic for 51 cases (68%), cryptogenic for 18 (24%), and idiopathic in six children (8%). Although there were more males (N=44) than females (N=31), the incidence rates were similar. There was a marked variability in annual and five-year incidence rates. CONCLUSIONS: Although the clinical characteristics of our patients were similar to other reported IS populations, the instability in IS incidence rates indicates a need for caution in interpreting smaller IS epidemiologic studies.