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Biomedical subjects

Susan R Levy

Publications and source records attributed to Susan R Levy.

10 recordsLinked to original sources

How long does it take for epilepsy to become intractable? A prospective investigation.

OBJECTIVE: To determine prospectively when in the course of epilepsy intractability becomes apparent. METHODS: Data are from a prospective cohort of 613 children followed for a median of 9.7 years. Epilepsy syndromes were grouped: focal, idiopathic, catastrophic, and other. Intractability was defined in two ways: (1) 2 drugs failed, 1 seizure/month, on average, for 18 months (stringent), and (2) failure of 2 drugs. Delayed intractability was defined as 3 or more years after epilepsy diagnosis. RESULTS: Eighty-three children (13.8%) met the stringent and 142 (23.2%) met the two-drug definition. Intractability depended on syndrome (p < 0.0001): 26 (31.3%) children meeting stringent and 39 (27.5%) meeting the 2-drug definition had delayed intractability. Intractability was delayed more often in focal than catastrophic epilepsy (stringent: 46.2 vs 14.3%, p = 0.003; two-drug: 40.3 vs 2.2%, p <or= 0.0001). Early remission periods preceded delayed intractability in 65.4 to 74.3% of cases. After becoming intractable, 20.5% subsequently entered remission and 13.3% were seizure free at last contact. INTERPRETATION: Intractable epilepsy may be delayed, especially in focal epilepsy. It often is preceded by a quiescent period, followed by further remissions. These findings help explain why surgically treatable epilepsies may take 20 years or longer before referral to surgery.

Adolescent↗

Strategies to enhance patient adherence: making it simple.

The problem of poor patient adherence has been extensively researched, but the rates of nonadherence have not changed much in the past 3 decades. Healthcare providers play a unique and important role in assisting patients' healthy behavior changes. We conducted a narrative review of the current literature to help providers become more familiar with proven interventions that can enhance patient adherence. We then grouped the interventions into categories that can be remembered by the mnemonic "SIMPLE":1. Simplifying regimen characteristics; 2. Imparting knowledge; 3. Modifying patient beliefs; 4. Leaving the bias; and 6. Evaluating adherence. Chronic lifestyle behavior change often requires a combination of all the aforementioned strategies. We suggest a conceptual framework, which calls for a multidisciplinary approach with the above strategies in the context of a healthcare team and system-related factors. We hope that this framework would not only help design scientifically proven interventions, but also reduce the time and cost involved with implementing these strategies in a healthcare setting.

Behavior Therapy↗

Special education needs of children with newly diagnosed epilepsy.

Children with epilepsy often experience poor social and educational outcomes. This study aimed to determine the timing of services with respect to the onset of seizures. It also aimed to identify the aspects of childhood epilepsy (type of epilepsy, etiology, seizure control, and treatment) that are associated with the use of special education services. As part of a prospective community-based study, 613 children were recruited when first diagnosed with epilepsy. Mean age at first seizure was 5 years 11 months (SD 4, range 1mo to 15y 8mo). Parents were interviewed 5 years after children were first diagnosed with epilepsy (n=542; 276 [51%] males). Children's mean age at time of interview was 11 years 10 months (SD 4y 1mo, range 5y 8mo to 21y 8mo). Etiology was classified as idiopathic (n=181, 33.4%), cryptogenic (n=261, 48.2%), and remote symptomatic (n=100, 18.5%). Service use was reported in 315 (58%) children. Compared with neurologically intact children (i.e. cryptogenic and idiopathic etiology; n=415, 77%), children with a remote symptomatic etiology and/or an epileptic encephalopathy (n=127, 23%) received services more frequently (88% vs 49%, p<0.001). In the former group, services were initiated for 66 (15%) children before their first seizure; according to age at onset, services were initiated before the first seizures in 12/164 (7.3%) if <5 years, 34/171 (19.9%) if 5-9 years, and 20/80 (25%) if >10 years. A large proportion of children with epilepsy, even if neurologically otherwise normal, receive special education services. Initiation of services often precedes onset of seizures even in neurologically intact children. This suggests that behavioral and cognitive abnormalities may predate the onset of epilepsy and are not necessarily the direct consequences of epilepsy.

Adolescent↗

Toothbrushing patterns over time in at-risk metropolitan African-American 5th- 8th graders.

OBJECTIVES: A large study of risky pre-teen behavior provided an opportunity to examine self-reported toothbrushing frequency for stability over time and adequacy. METHODS: 1115 metropolitan African-American children at risk for violence and drug use self-reported toothbrushing frequency in at least one of five measurement points from 5th to 8th grade as part of a larger study. Longitudinal data were available for 815 students. RESULTS: 81% reported mainly twice daily, 8% reported mainly once daily, 10% changed over time, and 1% were consistently less than once daily. CONCLUSIONS: Overall, the children reported once or twice daily toothbrushing frequency, stable between 5th and 8th grades. A minority of children showed low or inconsistent frequencies and these results may indicate an opportunity for intervention to improve habits.

Adolescent↗

Mortality in childhood-onset epilepsy.

OBJECTIVES: To evaluate mortality in children with newly diagnosed epilepsy, to determine the risk of death, and to identify predictors of death from the point of diagnosis. DESIGN: Prospective community-based cohort of 613 children with newly diagnosed epilepsy. The outcome measure was death. Chi2 Tests were used for bivariate analyses and the Cox proportional hazards model for multivariable analyses. Standardized mortality ratios were used to quantify the excess mortality in the cohort relative to the population. RESULTS: Thirteen deaths occurred during 4733 person-years of follow-up, for a crude death rate of 2.7 per 1000 person-years (0.52 per 1000 person-years in those with nonsymptomatic epilepsy and 12.6 per 1000 person-years in those with symptomatic epilepsy). Ten deaths were associated with the underlying cause of the seizures, 2 were associated with the occurrence or probable occurrence of seizures, and 1 was unrelated to seizures or the underlying disorder. On multivariable analysis, symptomatic etiology (rate ratio, 10.2; 95% confidence interval [CI], 2.1-49.6) and epileptic encephalopathy (rate ratio, 13.3; 95% CI, 3.4-51.7) were independently associated with mortality. The overall standardized mortality ratio for the cohort was 7.54 (95% CI, 4.38-12.99). In children with symptomatic epilepsy, the standardized mortality ratio was 33.46 (95% CI, 18.53-60.43), and in those with nonsymptomatic epilepsy, it was 1.43 (95% CI, 0.36-5.73). CONCLUSIONS: Children with epilepsy have an increased risk of death. Most deaths occur in children with severe underlying conditions and are not directly related to the occurrence of seizures.

Adolescent↗

Modeling remission and relapse in pediatric epilepsy: application of a Markov process.

Seizure outcome is frequently described in terms of patients ever attaining remission or being in terminal remission. Outcomes are more complicated and, over many years, repeated remission and relapses may occur. These are difficult to quantify with standard survival techniques used in analysis of remission and relapse. The Markov process, which allows one to track a patient's state (remission or not) over time, provides a suitable approach for studying repeated remission and relapse. In a prospective community-based study of children followed from the point of the initial diagnosis of epilepsy, we examined the probability of repeated remission and relapse over up to three different remission episodes (minimum 1 year each) per patient. The role of epilepsy syndrome was the main determinant of remission-relapse patterns considered in the analysis. Two different Markov models were used, one involving three states and the other seven states. Of 613 children initially recruited into the study, 602 were followed at least 1 year and thus eligible for the analysis. Almost 90% of the cohort experienced a remission; however, almost half then relapsed. Second remissions occurred in 81% of those who relapsed of whom 38% relapsed again. A third remission occurred in 82% of those after a second relapse of whom 58% relapsed yet again. After the first 2 years, approximately 70% of the cohort was in remission, 20% was no longer in remission having relapsed, and 10% had never been in remission. Significant differences were seen by underlying epilepsy syndrome. Children with one of the epileptic encephalopathies were least likely of all syndrome groups ever to remit. Those with symptomatic partial epilepsies were less likely to remit than children with any of the other syndromes, idiopathic partial or generalized, cryptogenic partial, and unclassified. Differences between these last groups became apparent when considering their subsequent remission and relapse histories. These differences were best seen in the seven-state model. For example, idiopathic partial epilepsies were most likely to enter remission and never relapse. By contrast, idiopathic generalized and cryptogenic partial epilepsies were more likely to remit and relapse repeatedly. The Markov approach provides an alternative to standard survival techniques for understanding remission and relapse outcomes in epilepsy. Its advantage is that it allows one to track the individuals' outcome over time even as the condition fluctuates. The technique would also be applicable in virtually any remitting-relapsing disorder.

Adolescent↗

Using multilevel, multisource needs assessment data for planning community interventions.

African Americans and Latinos share higher rates of cardiovascular disease (CVD) and diabetes compared with Whites. These diseases have common risk factors that are amenable to primary and secondary prevention. The goal of the Chicago REACH 2010-Lawndale Health Promotion Project is to eliminate disparities related to CVD and diabetes experienced by African Americans and Latinos in two contiguous Chicago neighborhoods using a community-based prevention approach. This article shares findings from the Phase 1 participatory planning process and discusses the implications these findings and lessons learned may have for programs aiming to reduce health disparities in multiethnic communities. The triangulation of data sources from the planning phase enriched interpretation and led to more creative and feasible suggestions for programmatic interventions across the four levels of the ecological framework. Multisource data yielded useful information for program planning and a better understanding of the cultural differences and similarities between African Americans and Latinos.

Adult↗

Longitudinal assessment of adaptive behavior in infants and young children with newly diagnosed epilepsy: influences of etiology, syndrome, and seizure control.

OBJECTIVES: The outcomes of childhood-onset epilepsy are highly varied and have several potential determinants. We examined the independent effects of syndrome type, seizure control, and etiology over time on adaptive behavior as measured by the Vineland Scales of Adaptive Behavior. METHODS: As part of a prospective community-based study of newly diagnosed epilepsy, parents of children who were younger than 3 years at the time of initial onset of epilepsy completed the Vineland Adaptive Behavior Scales screener version at entry into the study and once a year thereafter for up to 3 years. Longitudinal analyses were performed on the composite score as the primary outcome and on the 4 domain scores (communication, socialization, motor, and daily living) as confirmatory/secondary outcomes to determine the effects of syndrome (epileptic encephalopathy or other), seizure control (intractable or not), and etiology (symptomatic or not) on adaptive behavior at the time of initial diagnosis and over time. RESULTS: A total of 613 children were enrolled in the study, and 191 (31%) of these children met the age criterion for this analysis. Of these, 172 (90%) had adequate follow-up and had completed baseline and at least 1 subsequent Vineland assessment. Overall, Vineland scores (composite and individual domains) were somewhat below average at baseline (initial diagnosis). All declined significantly over time. All of the effects at baseline, however, were limited to children with epileptic encephalopathies and symptomatic etiology. Substantial declines over time occurred in these children, and there was an independent effect of intractable seizures as well. In children with none of these factors ( approximately 75% of the study group), baseline scores were consistent with average performance for the test norms and there was no evidence of any decline over time. CONCLUSIONS: Children with an underlying symptomatic etiology or a syndrome that can be characterized as 1 of the epileptic encephalopathies demonstrate impaired adaptive behavior at the time of initial diagnosis and experience additional declines in assessments of age-adjusted performance over time. Our results suggest that future seizure outcome is not strongly reflected in adaptive behavior at initial diagnosis but that it takes its toll on the child over time. Understanding how each of these factors affects development and how they interact with each other is the next step in designing effective interventions for lessening the impact of these disorders on the child. In the majority of children with onset of epilepsy during infancy or early childhood, adaptive behavior is within the normal range and does not show any evidence of declining over time. Although this is encouraging, it does not contradict other studies that have demonstrated behavioral and relatively subtle cognitive difficulties in school-aged children with epilepsy. Long-term follow-up in this cohort will permit us to examine the predictive value of the Vineland for later behavioral and cognitive difficulties in this group that, so far, seems to be doing well.

Activities of Daily Living↗

Developing community health promotion interventions: selecting partners and fostering collaboration.

Although an often desired goal, true partnership between community members and university researchers can be difficult to achieve. Strategies implemented in a diabetes prevention and control program in a Latino community may be effective in overcoming hurdles to collaborative research. The development of selection criteria can be useful for objectively choosing a community organization as a partner agency. The implementation of formal partnership principles is proposed as a strategy for building a successful partnership. Partnership principles are a powerful mechanism to assure ethical relations between collaborators. As a strategy for process evaluation, they can help organize data on the extent to which intent has translated into action. They provide a structure for project stability that can outlast individual commitments and a mechanism to keep project commitment on course and maintain active engagement.

Chicago↗