Evaluating adult care in Dravet syndrome upon transferring from pediatrics in the U.S.: A caregiver-based survey study.

Patients with Dravet syndrome (DS) and their caregivers must navigate a complex process upon transitioning from pediatric to adult healthcare settings. Our study examines the state of care transfer of patients with DS in the U.S. A 34-question e-survey evaluating patient demographics, clinical features, and details of the transfer process was sent to caregivers of adults with DS (≥18 years old) residing in the U.S. through the Dravet Syndrome Foundation. Forty-six responses were included in the analysis. Twenty-nine patients (n = 29/46) did not undergo transfer of care - mostly because they were still followed by pediatric neurologists/epileptologists (71%), whereas 17 (n = 17/46) underwent transfer of care. Adult neurology/epilepsy teams providing care never/rarely included a multidisciplinary team (71%), addressed patients' self-advocacy capabilities (53%), or legal guardianship/end-of-life decision-making (59%). Adult neurology/epilepsy teams were considered very much attentive/available (63%), attentive and accommodating to patients with behavioral/cognitive issues (50%), and knowledgeable about caring for patients with intellectual disability/behavioral issues (63%), collaborating with caregivers (75%), and DS - especially in adults (50%). Most caregivers (62.5%) rated the transfer process as good, very good, or excellent. Patients with DS and their caregivers would benefit from more accessible transition programs, which would be ideally equipped to deliver care tailored to these patients' needs.

Expert accuracy and inter-rater agreement of "must-know" EEG findings for adult and child neurology residents.

OBJECTIVE: We published a list of "must-know" routine EEG (rEEG) findings for trainees based on expert opinion. Here, we studied the accuracy and inter-rater agreement (IRA) of these "must-know" rEEG findings among international experts. METHODS: A previously validated online rEEG examination was disseminated to EEG experts. It consisted of a survey and 30 multiple-choice questions predicated on the previously published "must-know" rEEG findings divided into four domains: normal, abnormal, normal variants, and artifacts. Questions contained de-identified 10-20-s epochs of EEG that were considered unequivocal examples by five EEG experts. RESULTS: The examination was completed by 258 international EEG experts. Overall mean accuracy and IRA (AC1) were 81% and substantial (0.632), respectively. The domain-specific mean accuracies and IRA were: 76%, moderate (0.558) (normal); 78%, moderate (0.575) (abnormal); 85%, substantial (0.678) (normal variants); 85%, substantial (0.740) (artifacts). Academic experts had a higher accuracy than private practice experts (82% vs. 77%; p = .035). Country-specific overall mean accuracies and IRA were: 92%, almost perfect (0.836) (U.S.); 86%, substantial (0.762) (Brazil); 79%, substantial (0.646) (Italy); and 72%, moderate (0.496) (India). In conclusion, collective expert accuracy and IRA of "must-know" rEEG findings are suboptimal and heterogeneous. SIGNIFICANCE: We recommend the development and implementation of pragmatic, accessible, country-specific ways to measure and improve the expert accuracy and IRA.

Factors associated with facility childbirth and skilled birth attendance in Migori County, Kenya and the effect of Lwala Community Alliance intervention: a cross-sectional assessment from the 2019 and 2021 Lwala household surveys.

Background: Despite evidence of the beneficial effects of skilled birth attendance (SBA) on maternal health and childbirth outcomes, there are disparities in access across counties in Kenya. These include Migori County which has historically recorded high maternal mortality rates. In 2007, the Lwala Community Alliance was founded to improve health outcomes in this county. The objective of this study is to provide a baseline status of facility childbirth and SBA in Migori and to characterize the effect of Lwala intervention on these outcomes. Methods: A cross-sectional household survey was designed for a 10-year study to evaluate the effectiveness of Lwala initiatives. The 2019 and 2021 household surveys were conducted in Lwala intervention wards and in comparison wards with sample sizes of 3,846 and 5,928 mothers, respectively. The survey captured demographic, health, and socioeconomic data at each household, data on SBA and facility childbirth, and explanatory variables. A generalized linear model was used to determine factors associated with SBA. A secondary trend analysis was conducted to determine change over time in the explanatory variables and SBA. To determine the change in SBA rate due to Lwala intervention, controlling for background temporal trends, a difference-in-differences (DiD) model compared SBA rates in intervention wards and comparison wards. Results: SBA increased in all surveyed wards and across all explanatory variables from 2019 to 2021. The DiD analysis showed that the SBA rate increased more in Lwala intervention wards than in comparison wards (Adjusted Prevalence Rate Ratio 1.05, p < 0.001, 95%CI 1.03-1.08). The 2021 survey found the highest rates of both facility childbirths (97.9%, 95%CI 96.5-98.7) and SBA (98.2%, 95%CI 97.0-99.0) in North Kamagambo, the oldest ward of Lwala intervention. Higher educational status, four or more ANC visits, marriage/cohabitation, and wealth were significantly associated with increased SBA. Conclusions: We provide the first quasi-experimental evidence that Lwala interventions are significantly improving SBA which may inform related initiatives in similar settings. The household-survey data provides a baseline for continued evaluation of Lwala programs, and the breakdown by ward allows for development of specific programmatic targets.

Education Research: Competency-Based EEG Education: An Online Routine EEG Examination for Adult and Child Neurology Residents.

Background and Objectives: We recently published expert consensus-based curricular objectives for routine EEG (rEEG) interpretation for adult and child neurology residents. In this study, we used this curriculum framework to develop and validate an online, competency-based, formative and summative rEEG examination for neurology residents. Methods: We developed an online rEEG examination consisting of a brief survey and 30 multiple-choice questions covering EEG learning objectives for neurology residents in 4 domains: normal, abnormal, normal variants, and artifacts. Each question contained a deidentified EEG image, displayed in 2 montages (bipolar and average), reviewed and optimized by the authors to address the learning objectives. Respondents reported their level of confidence (LOC, 5-point Likert scale) with identifying 4 categories of EEG findings independently: states of wakefulness/sleep, sleep structures, normal variants, and artifacts. Accuracy and item discrimination were calculated for each question and LOC for each category. The test was disseminated by the International League Against Epilepsy and shared on social media. Results: Of 2,080 responses, 922 were complete. Respondents comprised clinical neurophysiologists/experts (n = 41), EEG/epilepsy clinical fellows (n = 211), EEG technologists (n = 128), attending neurologists (n = 111), adult neurology residents (n = 227), child neurology residents (n = 108), medical students (n = 24), attending non-neurologists (n = 18), and others (n = 54). Mean overall scores (95% CI) were 82% (77-86) (clinical neurophysiologists), 81% (79-83) (clinical fellows), and 72% (70-73) (adult and child neurology residents). Experts were more confident than clinical fellows in all categories but sleep structures. Experts and clinical fellows were more confident than residents in all 4 categories. Among residents, accuracy and LOC increased as a function of prior EEG weeks of training. Accuracy improved from 67% (baseline/no prior EEG training) to 77% (>12 prior EEG weeks). More than 8 weeks of EEG training was needed to reach accuracy comparable with clinical neurophysiologists on this rEEG examination. Increase in LOC was slower and less robust than increase in accuracy. All but 3 questions had a high discrimination index (>0.25). Discussion: This online, competency-based rEEG examination, mapped to a published EEG curriculum, has excellent psychometrics and differentiates experienced EEG readers from adult and child neurology residents. This online tool has the potential to improve resident EEG education worldwide.

Childhood mortality and associated factors in Migori County, Kenya: evidence from a cross-sectional survey.

OBJECTIVES: The under-five mortality (U5M) rate in Kenya (41 per 1000 live births) remains significantly above international goals (25 per 1000 live births). This is further exacerbated by regional inequalities in mortality. We aimed to describe U5M in Migori County, Kenya, and identify associated factors that can serve as programming targets. DESIGN: Cross-sectional observational survey. SETTING: Areas served by the Lwala Community Alliance and control areas in Migori County, Kenya. PARTICIPANTS: This study included 15 199 children born to respondents during the 18 years preceding the survey. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was mortality in the first 5 years of life. The survey was powered to detect a 10% change in various health metrics over time with 80% power. RESULTS: A total of 15 199 children were included in the primary analyses, and 230 (1.5%) were deceased before the fifth birthday. The U5M rate from 2016 to 2021 was 32.2 per 1000 live births. Factors associated with U5M included year of birth (HR 0.926, p<0.001), female sex (HR 0.702, p=0.01), parental marriage (HR 0.642, p=0.036), multiple gestation pregnancy (HR 2.776, p<0.001), birth spacing less than 18 months (HR 1.894, p=0.005), indoor smoke exposure (HR 1.916, p=0.027) and previous familial contribution to the National Hospital Insurance Fund (HR 0.553, p=0.009). The most common cause of death was malaria. CONCLUSIONS: We describe factors associated with childhood mortality in a Kenyan community using survival analyses of complete birth histories. Mortality rates will serve as the baseline for future programme evaluation as a part of a 10-year study design. This provides both the hyperlocal information needed to improve programming and generalisable conclusions for other organisations working in similar environments.

The leishmaniases in Kenya: A scoping review.

BACKGROUND: The leishmaniases are a group of four vector-borne neglected tropical diseases caused by 20 species of protozoan parasites of the genus Leishmania and transmitted through a bite of infected female phlebotomine sandflies. Endemic in over 100 countries, the four types of leishmaniasis-visceral leishmaniasis (VL) (known as kala-azar), cutaneous leishmaniasis (CL), mucocutaneous leishmaniasis (MCL), and post-kala-azar dermal leishmaniasis (PKDL)-put 1.6 billion people at risk. In Kenya, the extent of leishmaniasis research has not yet been systematically described. This knowledge is instrumental in identifying existing research gaps and designing appropriate interventions for diagnosis, treatment, and elimination. METHODOLOGY/PRINCIPAL FINDINGS: This study used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) methodology to determine the state of leishmaniases research in Kenya and identify research gaps. We searched seven online databases to identify articles published until January 2022 covering VL, CL, MCL, and/or PKDL in Kenya. A total of 7,486 articles were found, of which 479 underwent full-text screening, and 269 met our eligibility criteria. Most articles covered VL only (n = 141, 52%), were published between 1980 and 1994 (n = 108, 39%), and focused on the theme of "vectors" (n = 92, 34%). The most prevalent study types were "epidemiological research" (n = 88, 33%) tied with "clinical research" (n = 88, 33%), then "basic science research" (n = 49, 18%) and "secondary research" (n = 44, 16%). CONCLUSION/SIGNIFICANCE: While some studies still provide useful guidance today, most leishmaniasis research in Kenya needs to be updated and focused on prevention, co-infections, health systems/policy, and general topics, as these themes combined comprised less than 4% of published articles. Our findings also indicate minimal research on MCL (n = 1, <1%) and PKDL (n = 2, 1%). We urge researchers to renew and expand their focus on these neglected diseases in Kenya.

A brief review of traumatic brain injury rehabilitation.

INTRODUCTION: This article aims to provide an overview of the epidemiology, medical and rehabilitation issues, current evidence for traumatic brain injury (TBI) rehabilitation, recent advances and emerging practices. Special TBI population groups will also be addressed. MATERIALS AND METHODS: We included publications indexed in Medline and the Cochrane Database of Systemic Reviews from 1974 to 2006, relevant chapters in major rehabilitation texts and Physical Medicine and Rehabilitation Clinics of North America and accessed Internet publications. RESULTS: TBI has been implicated by the World Health Organisation to be a 21st century epidemic similar to malaria and HIV/AIDS, not restricted to the developed world. One third of patients may suffer severe TBI with long-term cognitive and behavioural disabilities. Injuries to the brain do not only damage the cerebrum but may give rise to a multisystem disorder due to associated injuries in 20% of cases, which can include complex neurological impairments, neuroendocrine and neuromedical complications. There is promising evidence of improved outcome and functional benefits with early induction into a transdisciplinary brain injury rehabilitation programme. However, TBI research is fraught with difficulties because of an intrinsically heterogeneous population due to age, injury severity and type, functional outcome measures and small samples. Recent advances in TBI rehabilitation include task-specific training of cognitive deficits, computer-aided cognitive remediation and visual-spatial and visual scanning techniques and body weight-supported treadmill training for motor deficits. In addition, special rehabilitation issues for mild TBI, TBI-related vegetative states, elderly and young TBI, ethical issues and local data will also be discussed.

Rehabilitation outcomes in elderly patients with traumatic brain injury in Singapore.

OBJECTIVE: To identify and characterize injury variables and outcomes in persons with traumatic brain injury (TBI) 55 years and older admitted to a tertiary rehabilitation unit. DESIGN: Retrospective study of 52 individuals with TBI covering a 4-year period. OUTCOME MEASURES: Admission and discharge Modified Barthel Index scores; total acute and rehabilitation length of stay; Glasgow Coma Scale (GCS); duration of posttraumatic amnesia (PTA); Glasgow Outcome Scale at discharge and at 6 months postinjury; Ranchos Los Amigos Scale; and discharge disposition. RESULTS: Most common mechanism of injury was falls (61.5%), and predominant computed tomographic scan finding was lobar contusion (44%). Thirty-one percent had GCS score less than 9, but 90% had PTA duration of more than 1 week. Mean length of stay in acute and rehabilitation facilities was 26.4 (SD = 15.9) days and 29.8 (SD = 14.4) days, respectively. Difference between admission and discharge Modified Barthel Index was significant (P < .001), and 90% were discharged home. There was improvement in Glasgow Outcome Scale score at 6 months. CONCLUSIONS: Most patients in this cohort had severe brain injury, which may be due to a higher incidence of intracerebral hematoma. The GCS score underestimates the severity of brain injury in elderly persons with TBI; PTA duration was more representative of severity. Older patients with TBI do benefit from rehabilitation with significant functional gains and a high rate of return to home and to community.