journal
https://read.qxmd.com/read/38751829/friedreich-ataxia-caregiver-reported-health-index-development-of-a-novel-disease-specific-caregiver-reported-outcome-measure
#1
JOURNAL ARTICLE
Jamison Seabury, Anika Varma, Jennifer Weinstein, Spencer J Rosero, Charlotte Engebrecht, Shaweta Khosa, Christine Zizzi, Ellen S Wagner, Danae Alexandrou, Brittany L Cohen, Nuran Dilek, John M Heatwole, David R Lynch, Courtney C Park, McKenzie Wells, S H Subramony, Chad R Heatwole
BACKGROUND AND OBJECTIVES: The Friedreich ataxia (FRDA) scientific community needs access to patient-centered outcome measures that satisfy regulatory guidelines and are capable of tracking clinically meaningful changes in FRDA disease burden. The objective of this research was to develop a novel, disease-specific caregiver-reported outcome measure for use in FRDA research and clinical care. METHODS: In prior work, we conducted qualitative interviews and a cross-sectional study of FRDA caregivers and patients to determine the symptoms of greatest importance to individuals with FRDA...
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38737515/feeding-difficulties-and-gastrostomy-in-dravet-syndrome-a-uk-wide-survey-and-2-center-experience
#2
JOURNAL ARTICLE
Lisa M Clayton, Bahar Azadi, Claire Eldred, Galia Wilson, Robert Robinson, Sanjay M Sisodiya
BACKGROUND AND OBJECTIVES: Dravet syndrome (DS) is one of the most common monogenic epilepsies. Alongside the core seizure and developmental phenotypes, problems with appetite, swallowing, and weight loss are frequently reported, necessitating gastrostomy in some. We explored the burden of feeding difficulties and need for gastrostomy across 3 DS populations in the United Kingdom. We document caregiver opinion and postgastrostomy outcomes, and provide guidance regarding feeding issues and gastrostomy in DS...
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38737514/provider-impressions-of-inpatient-teleneurology-consultation
#3
JOURNAL ARTICLE
Justin G James, Lawrence R Wechsler, Christina A Blum, Charles J Bae, Thomas F Tropea
BACKGROUND AND OBJECTIVES: Teleneurology usage has increased during the severe acute respiratory syndrome coronavirus 2 pandemic. However, studies evaluating physician impressions of inpatient teleneurology are limited. We implemented a quality improvement initiative to evaluate neurologists' impression following individual inpatient teleneurology consultation at a satellite hospital of a large academic center with no in-person neurology coverage. METHODS: A REDCap survey link was embedded within templates used by neurologists for documentation of inpatient consultations to be completed immediately after encounters...
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38737513/innovative-therapeutic-approaches-in-congenital-myasthenic-syndromes
#4
JOURNAL ARTICLE
Mohamed I Kediha, Meriem Tazir, Damien Sternberg, Bruno Eymard, Lamia Ali Pacha
BACKGROUND AND OBJECTIVES: To provide real-word clinical follow-up data on patients carrying variations of congenital myasthenic syndromes (CMS) and who respond to some innovative drugs. METHODS: Patients recruited from the Neurology Department of the Mustapha Bacha university hospital in Algiers. Treated with innovative drugs, they were monitored and their clinical progress was evaluated on the basis of clinical arguments suggestive of CMSs, but also para clinical arguments (electromyography and genetic study)...
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38726225/erratum-improved-accuracy-completeness-of-ehr-race-ethnicity-data-a-requisite-step-to-address-disparities-in-care
#5
(no author information available yet)
[This corrects the article DOI: 10.1212/CPJ.0000000000200313.].
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38720955/specific-birth-defects-following-antiseizure-medications-used-by-pregnant-women-with-epilepsy
#6
JOURNAL ARTICLE
Kelsey K Wiggs, Martin E Rickert, Patrick D Quinn, Brian M D'Onofrio, A Sara Öberg
BACKGROUND AND OBJECTIVES: Previous research has been limited in the comprehensive study of associations between the use of individual antiseizure medications (ASMs) in pregnancy and specific groups of birth defects, and systematic reviews and meta-analyses on the topic are limited by pooled samples and study designs. This study investigated birth defects related to ASM use in pregnancy in children born to women with epilepsy in Sweden over 20 years. METHODS: We used data from Swedish national registers to follow a cohort of 17,996 children born to women diagnosed with epilepsy any time before conception in Sweden from 1996 to 2016, following them through 2017...
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38720954/sex-differences-in-the-severity-and-progression-of-neuropsychiatric-symptoms-across-different-dementia-types
#7
JOURNAL ARTICLE
Chiara Silvestri, Valentina Almici, Ilenia Libri, Irene Mattioli, Maura Cosseddu, Rosanna Turrone, Jasmine Rivolta, Chiara Grassini, Salvatore Caratozzolo, Antonella Alberici, Alessandra Marengoni, Andrea Pilotto, Barbara Borroni, Alessandro Padovani, Alberto Benussi
BACKGROUND AND OBJECTIVES: Dementia presents not only differing neuropsychiatric symptoms (NPS) across Alzheimer disease (AD), frontotemporal dementia (FTD), dementia with Lewy bodies (DLB) but also subjective cognitive decline (SCD). This study examined sex-based variations in NPS severity and progression across these conditions. METHODS: We performed a longitudinal cohort study including 1,068 participants. Hierarchical generalized linear mixed models were used to model NPS as a function of disease severity and biological sex at birth...
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38720953/patterns-of-acute-ischemic-stroke-treatment-from-2010-to-2020-an-evolving-landscape-in-stroke-management-following-thrombectomy-trials
#8
JOURNAL ARTICLE
Ahmed Elbayomy, Jason J Kim, Simon G Ammanuel, Daniel Traverzo, Sindhu Battula, Azam Ahmed
BACKGROUND AND OBJECTIVES: Population-based studies on stroke can help guide the care of patients with acute ischemic stroke (AIS) by providing health care communities with information regarding the current usage of stroke treatments. It remains unclear how rapidly new techniques, particularly endovascular stroke treatment (EST), are being adopted and whether there is any disparity in their availability. Although studies using the National Inpatient Sample (NIS) have been conducted, updated studies over a longer period may provide further insights...
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38720952/inequalities-in-the-prevention-and-treatment-of-alzheimer-disease
#9
JOURNAL ARTICLE
Maurizio Giorelli
Incidence of Alzheimer disease (AD) is going to rise in the next years and to become a health and social emergency. The prevention and the therapeutic management of AD still present unmet needs worldwide. The recent approval of monoclonal antibodies against amyloid β (anti-Aβ mAbs) for AD has increased the level of uncertainty regarding on how such drugs should be administered, to whom, and for how long. Concerns about cost-effectiveness ratios of anti-Aβ mAbs and the need for actual strategies of risk prevention have further dug barriers of inequalities between the national health care systems...
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38720951/mri-derived-ad-signature-of-cortical-thinning-and-plasma-p-tau217-for-predicting-alzheimer-dementia-among-community-dwelling-older-adults
#10
JOURNAL ARTICLE
Lei Yu, Tianhao Wang, Oskar Hansson, Shorena Janelidze, Melissa Lamar, Konstantinos Arfanakis, David A Bennett, Julie A Schneider, Patricia A Boyle
BACKGROUND AND OBJECTIVES: Structural brain MRI and blood-based phosphorylated tau (p-tau) measures are among the least invasive and least expensive Alzheimer's disease (AD) biomarkers to date. The extent to which these biomarkers may outperform one another in predicting future Alzheimer dementia diagnosis is poorly understood, however. This study investigated 2 specific AD biomarkers, i.e., a cortical thickness signature of AD (AD-CT) and plasma p-tau217, for predicting Alzheimer dementia...
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38720950/improved-accuracy-completeness-of-ehr-race-ethnicity-data-a-requisite-step-to-address-disparities-in-care
#11
JOURNAL ARTICLE
Allison L Weathers, Neeta Garg, Karen B Lundgren, Sarah M Benish, Christine B Baca, Richard T Benson
Accurate and complete racial/ethnic data in the electronic health record are a requisite step to addressing disparities in neurologic care, and at local, regional, and national levels. The current data pertaining to the patients' race and ethnicity contained in the electronic health record are inadequate. This article outlines recommendations at the individual practice and electronic health record vendor level to improve documentation of race and ethnicity.
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38715732/the-pns-nurse-program-a-health-care-support-concept-for-patients-with-immune-mediated-peripheral-nervous-system-diseases
#12
JOURNAL ARTICLE
Marc Pawlitzki, Marcia Gasis, Lars Masanneck, Sven G Meuth, Tobias Ruck
BACKGROUND: Immune-mediated peripheral nervous system (PNS) disorders pose diagnostic and therapeutic challenges, necessitating collaborative, patient-centered care. Limited access to specialized centers leads to delayed diagnosis and care, as seen during the COVID-19 pandemic. To address these challenges, accessible specialized care is crucial. On-site support plays a vital role in advising and assisting patients and caregivers, enabling multidisciplinary care for PNS diseases. RECENT FINDINGS: The PNS Nurse Education Program tackles these complexities, using specialized nurses experienced in multiple sclerosis and Parkinson disease...
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38699600/understanding-abnormal-examination-findings-during-concussion-recovery-a-retrospective-chart-review
#13
JOURNAL ARTICLE
Nicholas S Streicher, Michael Popovich, Andrea Almeida, Bara Alsalaheen, Ingrid K Ichesco, Jeremiah Freeman, Matt Lorincz, James T Eckner
BACKGROUND AND OBJECTIVE: Physical examination findings in athletes with sport-related concussion (SRC) are not well described in the literature. The objective of this study was to describe physical examination findings during the first month following concussion in athletes, with a focus on the effect of sex, age, and time since injury. METHODS: This was a retrospective electronic medical record (EMR) review of physical examination findings in 500 patients aged 6-24 who were initially seen within 15 days of SRC at a multidisciplinary outpatient academic concussion clinic between 2017 and 2019...
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38699599/diagnosis-and-treatment-of-spontaneous-intracranial-hypotension-role-of-epidural-blood-patching
#14
REVIEW
Andrew L Callen, Deborah I Friedman, Simy Parikh, Jill C Rau, Wouter I Schievink, Jeremy K Cutsforth-Gregory, Timothy J Amrhein, Elena Haight, Robert P Cowan, Meredith J Barad, Jennifer M Hah, Tracy Jackson, Connie Deline, Andrea J Buchanan, Ian Carroll
PURPOSE OF REVIEW: This review focuses on the challenges of diagnosing and treating spontaneous intracranial hypotension (SIH), a condition caused by spinal CSF leakage. It emphasizes the need for increased awareness and advocates for early and thoughtful use of empirical epidural blood patches (EBPs) in suspected cases. RECENT FINDINGS: SIH diagnosis is hindered by variable symptoms and inconsistent imaging results, including normal brain MRI and unreliable spinal opening pressures...
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38690148/expanding-the-spectrum-of-congenital-myopathy-linked-to-variants-in-the-mybpc1-gene-a-clinical-report
#15
Pierre-Louis Lanvin, Dong Li, Solène Conrad, Armelle Magot, Xavier Micaelli, Yann Péréon, Marie Vincent, Bertrand Isidor, Damien Sternberg, Elizabeth M McCormick, Hakon Hakonarson, Sandra Mercier, Marni J Falk
OBJECTIVES: Heterozygous missense variants in MYBPC1 have been recently identified in 13 patients from 6 families with congenital myopathy with tremor. All the patients had mild skeletal myopathy invariably associated with a distinctive myogenic tremor and hypotonia with gradual clinical improvement. However, no phenotypic description has been reported for the neonatal respiratory impairment that patients may suffer. METHODS: We report 3 new patients from 2 independent families with congenital myopathy with tremor...
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38682006/clinic-based-characterization-of-adolescents-and-young-adults-with-migraine-psychological-functioning-headache-days-and-disability
#16
JOURNAL ARTICLE
Robert C Gibler, Maya A Marzouk, James Peugh, Brooke L Reidy, Michelle M Ernst, Morgan L Daffin, Scott W Powers, Marielle Kabbouche Samaha, Joanne Kacperski, Andrew D Hershey, Hope O'Brien, Shalonda K Slater
BACKGROUND AND OBJECTIVES: This cross-sectional observational study retrospectively examined clinical data collected from adolescents and young adults (AYAs) seeking care in a specialty headache clinic. We characterized participants' headache characteristics and psychological functioning and examined the association between self-reported anxiety and depressive symptoms and headache frequency, severity, and disability. METHODS: During their clinic visit, AYAs ( M age = 18...
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38682005/use-of-acid-suppression-therapy-and-odds-of-migraine-and-severe-headache-in-the-national-health-and-nutrition-examination-survey
#17
JOURNAL ARTICLE
Margaret Slavin, Cara L Frankenfeld, Alexander B Guirguis, Elizabeth K Seng
BACKGROUND AND OBJECTIVES: Headache is an adverse event associated with the use of proton pump inhibitors (PPIs). Recently, migraine has emerged more specifically as a potential adverse event with PPI use. The objectives of this work were to capitalize on existing data to evaluate the association between migraine and severe headache prevalence and use of acid-suppression therapy, including PPIs, H2 receptor antagonists (H2RAs), and generic antacids; to compare risk from PPIs vs H2RAs; and to assess for potential mitigation by a dietary factor affected by acid-suppression therapy...
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38660576/early-developmental-intervention-and-enriched-environment-in-cdkl5-developmental-and-epileptic-encephalopathy-a-case-report
#18
Martina Giorgia Perinelli, Cecilia Naboni, Ganna Balagura, Elisabetta Amadori, Maria Stella Vari, Valeria Capra, Camelia Lentoiou, Thomas Foiadelli, Fabio Sirchia, Antonella Luparia, Gianluigi Marseglia, Luca A Ramenghi, Pasquale Striano
OBJECTIVES: CDKL5 developmental and epileptic encephalopathy (CDKL5-DEE) is a rare X-linked dominant genetic disorder. Family-centered Early Intervention (EI) programs, which promote axonal plasticity and synaptic reorganization through exposure to an enriched environment, should be integrated into clinical practice. However, there is presently a dearth of dedicated EI protocols for patients with CDKL5-DEE and cerebral visual impairment (CVI). METHODS: We present a girl with a deletion of the CDKL5 gene (MIM*300203)...
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38617555/caregiver-experiences-and-burden-in-moderate-advanced-dementia-with-lewy-bodies
#19
JOURNAL ARTICLE
Melissa J Armstrong, Yunfeng Dai, Kaitlin Sovich, Brian LaBarre, Henry L Paulson, Susan M Maixner, Julie A Fields, Angela M Lunde, Leah K Forsberg, Bradley F Boeve, Carol A Manning, James E Galvin, Angela S Taylor, Zhigang Li
BACKGROUND AND OBJECTIVES: Dementia with Lewy bodies (DLB) is a common degenerative dementia, but research on caregiver experiences in late stages is lacking. This study aimed to investigate the caregiving experience in moderate-advanced DLB to identify opportunities for improving care and support. METHODS: Dyads of individuals with moderate-advanced DLB and their primary informal caregivers were recruited from specialty clinics, advocacy organizations, and research registries...
June 2024: Neurology. Clinical Practice
https://read.qxmd.com/read/38617554/operational-impact-of-neurology-rural-access-model-reflections-on-the-importance-of-demand-shaping
#20
JOURNAL ARTICLE
Alexis Kurek, Kennedy Boone-Sautter, Cynthia M Hingtgen, Aiesha Ahmed
BACKGROUND AND OBJECTIVES: Demand for specialty neurologic care has been steadily increasing over the past several decades, and health systems are needing to meet the demands of their patients while managing a dwindling workforce. This retrospective study investigates the operational impact of a regional neurology clinic staffed by advanced practice providers with remote physician oversight in a "hub and spoke" delivery model to serve lower complexity patients. METHODS: A retrospective, cross-sectional study was conducted to evaluate outcomes...
June 2024: Neurology. Clinical Practice
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