Improving the health literacy of persons with epilepsy.

Improving health literacy can improve health. This essay reviews the resources available to help improve epilepsy health literacy, including websites, drug inserts/labels/information leaflets, patient educators, handouts, plain language, lay summaries, and other efforts to close the gaps between research and epilepsy health literacy.

Biologic Correlates and Consequences of the Social Determinants of Health and Disease.

The consequences of experiences and exposures suffered by those living in poverty can last a lifetime and can even be passed on to the next generation. The challenges associated with poverty have been labeled the "social determinants of health" (SDoH), but this is something of a misnomer. A more appropriate label would be the "social determinants of disease.

Redefining feasibility in clinical trials: Collaborative approaches for improved site selection.

Background: This Site Feasibility Task Force convened to assess the complex and burdensome process of site feasibility in clinical trials. The objective was to create mutual understanding of challenges and provide suggestions for improving collaboration among sponsors, contract research organizations (CROs), and sites.

Methods: The task force was composed of representatives from sponsors, CROs and sites (43 % Sites, 20 % Site Networks, 10 % Small/mid-size sponsors, 10 % Small/mid-size CROs, 10 % Large sponsors, 7 % Large CROs).

Biases in Electronic Health Records Data for Generating Real-World Evidence: An Overview.

Electronic Health Records (EHR) are increasingly being perceived as a unique source of data for clinical research as they provide unprecedentedly large volumes of real-time data from real-world settings. In this review of the secondary uses of EHR, we identify the anticipated breadth of opportunities, pointing out the data deficiencies and potential biases that are likely to limit the search for true causal relationships. This paper provides a comprehensive overview of the types of biases that arise along the pathways that generate real-world evidence and the sources of these biases.

Design, implementation, and inferential issues associated with clinical trials that rely on data in electronic medical records: a narrative review.

Real world evidence is now accepted by authorities charged with assessing the benefits and harms of new therapies. Clinical trials based on real world evidence are much less expensive than randomized clinical trials that do not rely on "real world evidence" such as contained in electronic health records (EHR). Consequently, we can expect an increase in the number of reports of these types of trials, which we identify here as 'EHR-sourced trials.

Systemic inflammation as a biomarker of seizure propensity and a target for treatment to reduce seizure propensity.

People with diabetes can wear a device that measures blood glucose and delivers just the amount of insulin needed to return the glucose level to within bounds. Currently, people with epilepsy do not have access to an equivalent wearable device that measures a systemic indicator of an impending seizure and delivers a rapidly acting medication or other intervention (e.g.

Neonatal Cranial Ultrasound Findings among Infants Born Extremely Preterm: Associations with Neurodevelopmental Outcomes at 10 Years of Age.

Objective: To examine the association between neonatal cranial ultrasound (CUS) abnormalities among infants born extremely preterm and neurodevelopmental outcomes at 10 years of age.

Study Design: In a multicenter birth cohort of infants born at <28 weeks of gestation, 889 of 1198 survivors were evaluated for neurologic, cognitive, and behavioral outcomes at 10 years of age. Sonographic markers of white matter damage (WMD) included echolucencies in the brain parenchyma and moderate to severe ventricular enlargement.

Prediction of Seizure Recurrence. A Note of Caution.

Great strides have been made recently in documenting that machine-learning programs can predict seizure occurrence in people who have epilepsy. Along with this progress have come claims that appear to us to be a bit premature. We anticipate that many people will benefit from seizure prediction.

Prenatal tobacco smoke exposure and neurological impairment at 10 years of age among children born extremely preterm: a prospective cohort.

Objective: To determine the association between prenatal tobacco smoke exposure and neurological impairment at 10 years of age among children born extremely preterm (<28 weeks of gestation).

Design: The Extremely Low Gestational Age Newborn (ELGAN) Study, a prospective cohort.

Setting: Ten-year follow-up of extremely preterm infants born at 14 US hospitals between 2002 and 2004.

The lethality of non-familial child abductions: Characteristics and outcomes of 565 incidents involving youth under the age of 18 years.

Offender motivation for child abduction determines both the nature and final outcome of the abduction. Research has identified victim characteristics, offender characteristics, and sexual motivations as factors influencing child abduction and child abduction homicide. We examine 565 child abductions identified through the Federal Bureau of Investigation (FBI) to determine the characteristics of victim, perpetrator, and crime and their influence on whether the child is murdered.

Caffeine exposure during pregnancy: Is it safe?

Numerous studies have examined the association between maternal caffeine consumption and infant and childhood health outcomes and the results have been inconsistent. The study of maternal caffeine intake and infant and childhood health outcomes is prone to methodologic challenges. In this review, we examine the existing evidence juxtaposed with the epidemiologic design challenges that color the interpretation of the study results presented.

Histologic chorioamnionitis and risk of neurodevelopmental impairment at age 10 years among extremely preterm infants born before 28 weeks of gestation.

Background: Extremely preterm infants whose placenta had histologic evidence of chorioamnionitis have early brain dysfunction, but little is known about neurologic development at 10 years of age.

Objective: We investigated the association between histologic chorioamnionitis and neurodevelopmental impairment at 10 years among children born <28 weeks' gestation (extremely preterm).

Study Design: The multicenter Extremely Low Gestational Age Newborns study enrolled extremely preterm newborns from 2002 to 2004 at 14 hospitals in the United States.

Neonatal white matter damage and the fetal inflammatory response.

In 1962 a long-recognized pathologic abnormality in neonatal brains characterized by multiple telencephalic focal white matter necroses was renamed periventricular leukomalacia (PVL) and the authors inappropriately asserted that their entity was caused by anoxia. They also failed to include three other white matter histologic abnormalities. In this essay, we identify the breadth of white matter pathology, especially in very preterm newborns, and show that none of the four histologic expressions of white matter damage, including focal necrosis, are associated with hypoxemia or correlates as hypotension, but are instead associated with markers of fetal or perinatal inflammation, particularly in preterm babies.

Neurocognitive and social-communicative function of children born very preterm at 10 years of age: Associations with microorganisms recovered from the placenta parenchyma.

Objective: Infection of the placenta has been associated with preterm birth as well as neurocognitive impairment. This study aimed to determine whether specific bacterial species in the placenta of extremely preterm pregnancies are associated with neurological deficits later in life.

Study Design: Using data from 807 children in the ELGAN study the risks of a low score on six neurological assessments in relation to 15 different microbes were quantified with odds ratios.

Characteristics of Future Models of Integrated Outpatient Care.

Replacement of fee-for-service with capitation arrangements, forces physicians and institutions to minimize health care costs, while maintaining high-quality care. In this report we described how patients and their families (or caregivers) can work with members of the medical care team to achieve these twin goals of maintaining-and perhaps improving-high-quality care and minimizing costs. We described how increased self-management enables patients and their families/caregivers to provide electronic patient-reported outcomes (i.

Antecedents of epilepsy and seizures among children born at extremely low gestational age.

Objective: To identify specific risk factors for epilepsy for individuals born extremely preterm.

Study Design: In a prospective cohort study, at 10-year follow-up, children were classified as having epilepsy or seizures not associated with epilepsy. We evaluated for association of perinatal factors using time-oriented, multinomial logistic regression models.

Socioeconomic status and early blood concentrations of inflammation-related and neurotrophic proteins among extremely preterm newborns.

The main objective of this study was to evaluate the relationship between mother's socioeconomic disadvantage and blood concentrations of inflammation-related proteins among extremely preterm newborns (<28 weeks gestation), a group at heightened risk of cognitive impairment when exposed to systemic inflammation. We measured the concentrations of 27 inflammatory and neurotrophic proteins in blood specimens collected a week apart during the first postnatal month from 857 extremely preterm newborns in the United States. We classified children according to 3 indicators/correlates of socioeconomic disadvantage, mother's eligibility for government-provided medical care insurance (Medicaid), mother's formal education level, and mother's IQ approximated with the Kaufman Brief Intelligence Test- 2.

Early Postnatal IGF-1 and IGFBP-1 Blood Levels in Extremely Preterm Infants: Relationships with Indicators of Placental Insufficiency and with Systemic Inflammation.

Objective: To evaluate to what extent indicators of placenta insufficiency are associated with low concentrations of insulin-like growth factor 1 (IGF-1) and IGF-1-binding protein-1 (IGFBP-1) in neonatal blood, and to what extent the concentrations of these growth factors are associated with concentrations of proteins with inflammatory, neurotrophic, or angiogenic properties.

Study Design: Using multiplex immunoassays, we measured the concentrations of IGF-1 and IGFBP-1, as well as 25 other proteins in blood spots collected weekly from ≥ 880 infants born before the 28th week of gestation, and sought correlates of concentrations in the top and bottom quartiles for gestational age and day the specimen was collected.

Results: Medically indicated delivery and severe fetal growth restriction (sFGR) were associated with low concentrations of IGF-1 on the first postnatal day and with high concentrations of IGFBP-1 on almost all days.

Neurocognitive function of 10-year-old multiples born less than 28 weeks of gestational age.

Introduction: Few studies have examined the relationship between birth plurality and neurocognitive function among children born extremely preterm.

Study Design: We compared rates of Z-scores ≤-2 on 18 tests of neurocognitive function and academic achievement at age 10 years in 245 children arising from twin pregnancies, 55 from triplet pregnancies, and 6 from a septuplet pregnancy to that of 568 singletons, all of whom were born before the 28th week of gestation.

Results: In total, 874 children were evaluated at the age of 10 years.

Antecedents of Obesity Among Children Born Extremely Preterm.

Background: Childhood obesity is a pervasive public health problem with risk factors such as maternal prepregnancy BMI and rapid infant weight gain. Although catch-up weight gain promotes more favorable neurodevelopment among infants born preterm, it is not clear whether faster weight gain early in life, or other correlates of preterm birth, are associated with later obesity in this population.

Methods: We used prospective data from the multicenter, observational Extremely Low Gestational Age Newborn Study.

Caring electronically for young outpatients who have epilepsy.

Purpose: The purpose of this study was to review electronic tools that might improve the delivery of epilepsy care, reduce medical care costs, and empower families to improve self-management capability.

Method: We reviewed the epilepsy-specific literature about self-management, electronic patient-reported or provider-reported outcomes, on-going remote surveillance, and alerting/warning systems.

Conclusions: The improved care delivery system that we envision includes self-management, electronic patient (or provider)-reported outcomes, on-going remote surveillance, and alerting/warning systems.