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1.
Neurol Clin Pract ; 14(5): e200335, 2024 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-38919930

RESUMO

Background and Objectives: In 2016, a randomized controlled trial demonstrated the clinical efficacy of trans-sternal thymectomy for patients with non-thymomatous myasthenia gravis (MG). Whether large-scale changes occurred in clinical practice after this trial is unknown. Methods: We performed a retrospective longitudinal cross-sectional analysis using National Inpatient Sample (NIS) data from 2012 to 2019. Our study included hospitalized adults at least 18 years of age diagnosed with MG without an associated thymoma. We used joinpoint regression to analyze annual trends in thymectomy volume and surgical approach (minimally invasive vs trans-sternal) from 2012 to 2019. Using logistic regression models, we examined patient and hospital-level factors that may have influenced whether thymectomy was performed, such as age, sex, race, insurance payor, hospital size and teaching status, and Elixhauser Comorbidity Index. Sampling weights were applied to account for the complex survey design of NIS. Results: The total number of thymectomy procedures increased by 69.8% per year (95% CI 40.1-105.8) between 2012 and 2019. Trans-sternal thymectomies increased by 62.8% per year (95% CI 35.8-95.2) and minimally invasive thymectomies by 83.7% per year (95% CI 38.1-144.3). Thymectomies were significantly more likely to occur in 2017-2019 compared with 2012-2016 (OR 1.93, 95% CI 1.62-2.31). In a multivariable regression model, several factors decreased the odds of patients with MG having a thymectomy: older age, Black race (OR 0.62, 95% CI 0.49-0.77), female (OR 0.73, 95% CI 0.63-0.86), and higher Elixhauser Comorbidity Index. Patients in medium (OR 1.82, 95% CI 1.30-2.55) or large (OR 2.81, 95% CI 2.07-3.82) size and urban teaching hospitals (OR 6.09, 95% CI 2.65-13.97) were more likely to undergo thymectomy. Discussion: Thymectomy is being performed more frequently for non-thymomatous MG, especially after 2016 after publication of a positive phase III clinical trial. There are several disparities in thymectomy utilization that warrant further attention.

2.
Artigo em Inglês | MEDLINE | ID: mdl-38907811

RESUMO

PURPOSE OF REVIEW: To review the literature on visual dysfunction in dementia with Lewy bodies (DLB), including its mechanisms and clinical implications. RECENT FINDINGS: Recent studies have explored novel aspects of visual dysfunction in DLB, including visual texture agnosia, mental rotation of 3-dimensional drawn objects, and reading fragmented letters. Recent studies have shown parietal and occipital hypoperfusion correlating with impaired visuoconstruction performance. While visual dysfunction in clinically manifest DLB is well recognized, recent work has focused on prodromal or mild cognitive impairment (MCI) due to Lewy body pathology with mixed results. Advances in retinal imaging have recently led to the identification of abnormalities such as parafoveal thinning in DLB. Patients with DLB experience impairment in color perception, form and object identification, space and motion perception, visuoconstruction tasks, and illusions in association with visual cortex and network dysfunction. These symptoms are associated with visual hallucinations, driving impairment, falls, and other negative outcomes.

3.
Ophthalmic Epidemiol ; : 1-9, 2024 May 08.
Artigo em Inglês | MEDLINE | ID: mdl-38718102

RESUMO

PURPOSE: Self-reported visual difficulty is consistently associated with dementia and other neuropsychiatric outcomes, but studies of specific age-related eye diseases have yielded conflicting results. METHODS: We conducted a retrospective cohort study using data from The National Health and Aging Trends Study, an ongoing nationally representative survey of older U.S. adults (n = 10,089). All subjects are screened for self-reported visual difficulty annually. Using linked Medicare claims data, we identified subjects with age-related macular degeneration (AMD), primary open-angle glaucoma (POAG), diabetic retinopathy, and cataract. For each condition, controls with complete Medicare eligibility and at least one eye care encounter were selected. We used semiparametric discrete time proportional hazards models to measure associations with incident dementia, and generalized estimating equations to examine longitudinal associations with depression, anxiety, and hallucinations, adjusting for baseline demographics and time-varying comorbidities. RESULTS: Self-reported visual difficulty was associated with dementia (HR 1.16, 95% CI: 1.00-1.34), depression (OR 1.14, 95% CI: 1.04-1.26), anxiety (OR 1.17, 95% CI: 1.06-1.29), and hallucinations (OR 1.54, 95% CI: 1.29-1.84). Diabetic retinopathy was associated with depression (OR 1.31, 95% CI: 1.05-1.64), and cataracts were associated with a lower risk of depression (OR 0.84, 95% CI: 0.74-0.95) and anxiety (OR 0.86, 95% CI: 0.75-0.99). There were no other associations between age-related eye disease and neuropsychiatric outcomes. CONCLUSION: Self-reported visual difficulty is associated with dementia and other neuropsychiatric outcomes to a greater degree than age-related eye disease. These findings highlight the distinction between self-reported vision and clinically diagnosed eye disease with regard to health outcomes in older adults.

4.
J Neuroophthalmol ; 2024 May 06.
Artigo em Inglês | MEDLINE | ID: mdl-38706093

RESUMO

BACKGROUND: Administrative claims have been used to study the incidence and outcomes of nonarteritic ischemic optic neuropathy (NAION), but the validity of International Classification of Diseases (ICD)-10 codes for identifying NAION has not been examined. METHODS: We identified patients at 3 academic centers who received ≥1 ICD-10 code for NAION in 2018. We abstracted the final diagnosis from clinical documentation and recorded the number of visits with an NAION diagnosis code. We calculated positive predictive value (PPV) for the overall sample and stratified by subspecialty and the number of diagnosis codes. For patients with ophthalmology or neuro-ophthalmology visit data, we recorded presenting symptoms, examination findings, and laboratory data and calculated PPV relative to case definitions of NAION that incorporated sudden onset of symptoms, optic disc edema, afferent pupillary defect, and other characteristics. RESULTS: Among 161 patients, PPV for ≥1 ICD-10 code was 74.5% (95% CI: 67.2%-80.7%). PPV was similar when restricted to patients who had visited an ophthalmologist (75.8%, 95% CI: 68.4%-82.0%) but increased to 86.8% when restricted to those who had visited neuro-ophthalmologists (95% CI: 79.2%-91.9%). Of 113 patients with >1 ICD-10 code and complete examination data, 37 (32.7%) had documented sudden onset, optic disc swelling, and an afferent pupillary defect (95% CI: 24.7%-42.0%). Of the 76 patients who did not meet these criteria, 54 (71.0%) still received a final clinical diagnosis of NAION; for most (41/54, 75.9%), this discrepancy was due to lack of documented optic disc edema. CONCLUSIONS: The validity of ICD-10 codes for NAION in administrative claims data is high, particularly when combined with provider specialty.

5.
NPJ Parkinsons Dis ; 10(1): 97, 2024 May 03.
Artigo em Inglês | MEDLINE | ID: mdl-38702337

RESUMO

Observational studies in Parkinson's disease (PD) deeply characterize relatively small numbers of participants. The Molecular Integration in Neurological Diagnosis Initiative seeks to characterize molecular and clinical features of every PD patient at the University of Pennsylvania (UPenn). The objectives of this study are to determine the feasibility of genetic characterization in PD and assess clinical features by sex and GBA1/LRRK2 status on a clinic-wide scale. All PD patients with clinical visits at the UPenn PD Center between 9/2018 and 12/2022 were eligible. Blood or saliva were collected, and a clinical questionnaire administered. Genotyping at 14 GBA1 and 8 LRRK2 variants was performed. PD symptoms were compared by sex and gene groups. 2063 patients were approached and 1,689 (82%) were enrolled, with 374 (18%) declining to participate. 608 (36%) females were enrolled, 159 (9%) carried a GBA1 variant, and 44 (3%) carried a LRRK2 variant. Compared with males, females across gene groups more frequently reported dystonia (53% vs 46%, p = 0.01) and anxiety (64% vs 55%, p < 0.01), but less frequently reported cognitive impairment (10% vs 49%, p < 0.01) and vivid dreaming (53% vs 60%, p = 0.01). GBA1 variant carriers more frequently reported anxiety (67% vs 57%, p = 0.04) and depression (62% vs 46%, p < 0.01) than non-carriers; LRRK2 variant carriers did not differ from non-carriers. We report feasibility for near-clinic-wide enrollment and characterization of individuals with PD during clinical visits at a high-volume academic center. Clinical symptoms differ by sex and GBA1, but not LRRK2, status.

6.
Parkinsonism Relat Disord ; 124: 106982, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38729797

RESUMO

BACKGROUND: Gastrointestinal (GI) dysfunction is a common non-motor feature of Parkinson disease (PD). GI symptoms may start years before the onset of motor symptoms and impair quality of life. Robust clinical trial data is lacking to guide screening, diagnosis and treatment of GI dysfunction in PD. OBJECTIVE: To develop consensus statements on screening, diagnosis, and treatment of GI dysfunction in PD. METHODS: The application of a modified Delphi panel allowed for the synthesis of expert opinions into clinical statements. Consensus was predefined as a level of agreement of 100 % for each item. Five virtual Delphi rounds were held. Two movement disorders neurologists reviewed the literature on GI dysfunction in PD and developed draft statements based on the literature review. Draft statements were distributed among the panel that included five movement disorder neurologists and two gastroenterologists, both experts in GI dysmotility and its impact on PD symptoms. All members reviewed the statements and references in advance of the virtual meetings. In the virtual meetings, each statement was discussed, edited, and a vote was conducted. If there was not 100 % consensus, further discussions and modifications ensued until there was consensus. RESULTS: Statements were developed for screening, diagnosis, and treatment of common GI symptoms in PD and were organized by anatomic segments: oral cavity and esophagus, stomach, small intestine, and colon and anorectum. CONCLUSIONS: These consensus recommendations offer a practical framework for the diagnosis and treatment of GI dysfunction in PD.


Assuntos
Consenso , Técnica Delphi , Gastroenteropatias , Doença de Parkinson , Humanos , Doença de Parkinson/complicações , Doença de Parkinson/terapia , Doença de Parkinson/diagnóstico , Gastroenteropatias/etiologia , Gastroenteropatias/terapia , Gastroenteropatias/diagnóstico
7.
Neurology ; 102(6): e209161, 2024 Mar 26.
Artigo em Inglês | MEDLINE | ID: mdl-38447117

RESUMO

BACKGROUND AND OBJECTIVES: Genetic testing is now the standard of care for many neurologic conditions. Health care disparities are unfortunately widespread in the US health care system, but disparities in the utilization of genetic testing for neurologic conditions have not been studied. We tested the hypothesis that access to and results of genetic testing vary according to race, ethnicity, sex, socioeconomic status, and insurance status for adults with neurologic conditions. METHODS: We analyzed retrospective data from patients who underwent genetic evaluation and testing through our institution's neurogenetics program. We tested for differences between demographic groups in 3 steps of a genetic evaluation pathway: (1) attending a neurogenetic evaluation, (2) completing genetic testing, and (3) receiving a diagnostic result. We compared patients on this genetic evaluation pathway with the population of all neurology outpatients at our institution, using univariate and multivariable logistic regression analyses. RESULTS: Between 2015 and 2022, a total of 128,440 patients were seen in our outpatient neurology clinics and 2,540 patients underwent genetic evaluation. Black patients were less than half as likely as White patients to be evaluated (odds ratio [OR] 0.49, p < 0.001), and this disparity was similar after controlling for other demographic factors in multivariable analysis. Patients from the least wealthy quartile of zip codes were also less likely to be evaluated (OR 0.67, p < 0.001). Among patients who underwent evaluation, there were no disparities in the likelihood of completing genetic testing, nor in the likelihood of a diagnostic result after adjusting for age. Analyses restricted to specific indications for genetic testing supported these findings. DISCUSSION: We observed unequal utilization of our clinical neurogenetics program for patients from marginalized and minoritized demographic groups, especially Black patients. Among patients who do undergo evaluation, all groups benefit similarly from genetic testing when it is indicated. Understanding and removing barriers to accessing genetic testing will be essential to health care equity and optimal care for all patients with neurologic disorders.


Assuntos
Doenças do Sistema Nervoso , Neurologia , Adulto , Humanos , Estudos Retrospectivos , Doenças do Sistema Nervoso/diagnóstico , Doenças do Sistema Nervoso/genética , Instituições de Assistência Ambulatorial , Testes Genéticos
8.
Mov Disord Clin Pract ; 11(5): 496-503, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38419568

RESUMO

BACKGROUND: Fatigue is a prevalent and debilitating symptom in neurological disorders, including spinocerebellar ataxias (SCAs). However, the risk factors of fatigue in the SCAs as well as its impact have not been well investigated. OBJECTIVES: To study the prevalence of fatigue in SCAs, the factors contributing to fatigue, and the influence of fatigue on quality of life. METHODS: Fatigue was assessed in 418 participants with SCA1, SCA2, SCA3, and SCA6 from the Clinical Research Consortium for the Study of Cerebellar Ataxia using the Fatigue Severity Scale. We conducted multi-variable linear regression models to examine the factors contributing to fatigue as well as the association between fatigue and quality of life. RESULTS: Fatigue was most prevalent in SCA3 (52.6%), followed by SCA1 (36.7%), SCA6 (35.7%), and SCA2 (35.6%). SCA cases with fatigue had more severe ataxia and worse depressive symptoms. In SCA3, those with fatigue had a longer disease duration and longer pathological CAG repeat numbers. In multi-variable models, depressive symptoms, but not ataxia severity, were associated with more severe fatigue. Fatigue, independent of ataxia and depression, contributed to worse quality of life in SCA3 and SCA6 at baseline, and fatigue continued affecting quality of life throughout the disease course in all types of SCA. CONCLUSIONS: Fatigue is a common symptom in SCAs and is closely related to depression. Fatigue significantly impacts patients' quality of life. Therefore, screening for fatigue should be considered a part of standard clinical care for SCAs.


Assuntos
Fadiga , Qualidade de Vida , Ataxias Espinocerebelares , Humanos , Qualidade de Vida/psicologia , Ataxias Espinocerebelares/psicologia , Ataxias Espinocerebelares/complicações , Ataxias Espinocerebelares/genética , Ataxias Espinocerebelares/epidemiologia , Masculino , Fadiga/psicologia , Fadiga/epidemiologia , Feminino , Pessoa de Meia-Idade , Adulto , Idoso , Índice de Gravidade de Doença , Prevalência , Depressão/epidemiologia , Depressão/psicologia
9.
J Neuroophthalmol ; 2024 Jan 03.
Artigo em Inglês | MEDLINE | ID: mdl-38170607

RESUMO

BACKGROUND: Idiopathic intracranial hypertension (IIH) disproportionately affects women from socioeconomically disadvantaged communities, but specific social determinants of health have not been examined. METHODS: We used data from the National Institutes of Health's All of Us Research Program, an ongoing nationwide study of more than 300,000 diverse individuals in the United States. Height and weight were measured at baseline, and participants completed questionnaires about demographics, health care access, and quality of life. Women aged 18-50 years with IIH were identified through electronic health record data, excluding those with venous thrombosis, meningitis, hydrocephalus, or central nervous system neoplasms. We used logistic regression to compare questionnaire responses for IIH cases and controls, adjusting for age, race, ethnicity, annual income, and body mass index (BMI). RESULTS: We included 416 women with IIH and 107,111 women without IIH. The mean age was 38 years, and 49.3% identified as non-White. After adjusting for age, race/ethnicity, and BMI, women with IIH were more likely to be unemployed (odds ratio [OR] 1.40, 95% confidential interval [CI]: 1.14-1.71) and report delaying care because of difficulty affording copays (OR 1.47, 95% CI: 1.02-2.10) or specialist care (OR 1.52, 95% CI: 1.06-2.18). They also delayed care because of rural residence (OR 2.08, 95% CI: 1.25-3.47) and transportation limitations (OR 2.23, 95% CI: 1.55-3.20). Although women with IIH were more likely to be non-Hispanic Black (OR 1.66, 95% CI: 1.32-2.09), this association lost significance when controlling for BMI and income (OR 1.27, 95% CI: 0.96-1.68). CONCLUSIONS: Women with IIH experience adverse social determinants of health beyond those associated with obesity alone.

10.
Graefes Arch Clin Exp Ophthalmol ; 262(3): 865-870, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37947822

RESUMO

PURPOSE: Older adults with Alzheimer's disease are less likely to be offered cataract surgery than the general population, but these disparities have not been examined in the context of other neurodegenerative disorders such as Parkinson's disease (PD). METHODS: Using data from the English Longitudinal Study on Ageing (ELSA), an ongoing, longitudinal population-based survey of older adults in England, we examined the relationship between PD and cataract surgery among adults 50 and older. We used logistic regression to measure the association between PD and history of cataract surgery at baseline. In longitudinal analyses of subjects with no history of cataract surgery at time of enrollment, we used semiparametric, discrete-time proportional hazards models to model the incidence of cataract surgery as a function of PD and other time-dependent covariates. Models were adjusted for demographic variables, self-reported comorbidities, and measures of daily activity limitation. RESULTS: We included data from 19,241 eligible ELSA respondents, of whom 231 (1.2%) reported a diagnosis of PD. PD was positively associated with a history of self-reported cataract surgery at baseline (OR 3.66, 95% CI: 2.55-5.26), but this did not remain significant after adjusting for confounders (OR 1.22, 95% CI: 0.75-1.98). Among subjects with no history of cataract surgery at baseline, PD was also not associated with incident cataract surgery (adjusted HR 1.32, 95% CI: 0.86-2.02). CONCLUSION: Unlike Alzheimer's disease, people with PD were no less likely to receive cataract surgery compared to those without PD.


Assuntos
Doença de Alzheimer , Catarata , Doença de Parkinson , Idoso , Humanos , Envelhecimento , Catarata/complicações , Catarata/epidemiologia , Estudos Longitudinais , Doença de Parkinson/complicações , Doença de Parkinson/epidemiologia , Pessoa de Meia-Idade
11.
J Neurol ; 271(2): 733-747, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37891417

RESUMO

The role of genetic testing in neurologic clinical practice has increased dramatically in recent years, driven by research on genetic causes of neurologic disease and increased availability of genetic sequencing technology. Genetic testing is now indicated for adults with a wide range of common neurologic conditions. The potential clinical impacts of a genetic diagnosis are also rapidly expanding, with a growing list of gene-specific treatments and clinical trials, in addition to important implications for prognosis, surveillance, family planning, and diagnostic closure. The goals of this review are to provide practical guidance for clinicians about the role of genetics in their practice and to provide the neuroscience research community with a broad survey of current progress in this field. We aim to answer three questions for the neurologist in practice: Which of my patients need genetic testing? What testing should I order? And how will genetic testing help my patient? We focus on common neurologic disorders and presentations to the neurology clinic. For each condition, we review the most current guidelines and evidence regarding indications for genetic testing, expected diagnostic yield, and recommended testing approach. We also focus on clinical impacts of genetic diagnoses, highlighting a number of gene-specific therapies recently approved for clinical use, and a rapidly expanding landscape of gene-specific clinical trials, many using novel nucleotide-based therapeutic modalities like antisense oligonucleotides and gene transfer. We anticipate that more widespread use of genetic testing will help advance therapeutic development and improve the care, and outcomes, of patients with neurologic conditions.


Assuntos
Doenças do Sistema Nervoso , Neurociências , Adulto , Humanos , Doenças do Sistema Nervoso/diagnóstico , Doenças do Sistema Nervoso/genética , Doenças do Sistema Nervoso/terapia , Testes Genéticos , Neurologistas , Instituições de Assistência Ambulatorial
12.
J Stroke Cerebrovasc Dis ; 32(12): 107401, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37897885

RESUMO

OBJECTIVES: To determine hospital-level factors associated with thrombectomy uptake. MATERIALS AND METHODS: The Nationwide Emergency Department Sample was retrospectively queried to determine the total number of thrombectomies performed based on different hospital characteristics. Joint point analysis was used to determine which years were associated with significant increases in the number of high-volume thrombectomy centers (ostensibly defined as >50 thrombectomies/year), thrombectomy-capable centers (>15 thrombectomies/year), and total number of thrombectomies performed. Multivariable logistic regression was used to determine hospital factors associated with having an increased odds of performing thrombectomies, and of being classified as a high-volume thrombectomy or a thrombectomy-capable center. RESULTS: Between 2007-2020 there was a stepwise increase in the number of thrombectomy-capable and high-volume thrombectomy centers in the United States. In 2020, there were a total of 15,705 thrombectomies performed, with 89 high-volume thrombectomy centers, and 359 thrombectomy-capable centers. The number of thrombectomy-capable centers significantly increased after 2011. After 2013 and 2016 there was a significant change in the growth rate of high-volume thrombectomy centers. There was also a significant increase in the total number of thrombectomies performed after 2016. Hospital characteristics that were associated with an increased likelihood of being classified as thrombectomy-capable or high-volume included trauma level 1 and 2 hospitals. CONCLUSIONS: Between 2007 and 2020, there was a marked growth in thrombectomy utilization for acute ischemic stroke. This growth outpaced new diagnoses of ischemic stroke, and was driven largely by certain hospital types, with the greatest rises following seminal publications of positive randomized thrombectomy trials.


Assuntos
Isquemia Encefálica , AVC Isquêmico , Acidente Vascular Cerebral , Humanos , Estados Unidos , Acidente Vascular Cerebral/diagnóstico por imagem , Acidente Vascular Cerebral/cirurgia , Isquemia Encefálica/diagnóstico , Estudos Retrospectivos , Trombectomia/efeitos adversos , Hospitais , Resultado do Tratamento
13.
Parkinsonism Relat Disord ; 114: 105793, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37567062

RESUMO

BACKGROUND: Parkinson disease (PD) patients are at increased risk of serious injury, such as fall-related fractures. Prescription medications are a modifiable factor for injury risk. OBJECTIVES: To determine the extent to which a serious injury requiring hospitalization affects prescribing of potentially inappropriate medications (PIMs) among older adults with PD. METHODS: We conducted a quasi-experimental difference-in-difference (DID) study using 2013-2017 Medicare data. The cohort consisted of beneficiaries with PD hospitalized for injury versus for other reasons. PIMs were classified into PD and injury-relevant categories (CNS-active PIMs, PD motor symptom PIMs, PD non-motor symptom PIMs, PIMs that reduce bone mineral density). We estimated mean standardized daily doses (SDDs) of medications within each PIM category before and at 3, 6, and 12 months after hospitalization. We used generalized linear regression models to compare changes in mean SDDs for each PIM category between the injury and non-injury group at each timepoint, adjusting for biological, clinical and social determinants of health variables. RESULTS: Both groups discontinued PIMs and/or reduced PIM doses after hospitalization. There were no between-group differences in mean SDD changes, after covariate adjustment, for any PIM category, except for the CNS-active PIMs category at 3 months (DID p-value = 0.00) and for the category of PIMs that reduce bone mineral density at all timepoints (DID p-values = 0.02, 0.04, 0.02 at 3, 6, and 12 months). CONCLUSIONS: Similar patterns of PIM among persons with PD after hospitalization for serious injury versus for other reasons may represent a missed opportunity to deprescribe high-risk medications during care transitions.


Assuntos
Doença de Parkinson , Lista de Medicamentos Potencialmente Inapropriados , Humanos , Idoso , Estados Unidos , Prescrição Inadequada , Doença de Parkinson/tratamento farmacológico , Medicare , Hospitalização , Estudos Retrospectivos
14.
Neurology ; 101(17): e1747-e1752, 2023 10 24.
Artigo em Inglês | MEDLINE | ID: mdl-37596043

RESUMO

A 48-year-old man was referred to the movement disorders clinic for 10 years of progressive slurred speech, spasticity, limb incoordination, and wide-based gait. Extensive neurologic workup was inconclusive, including serum and CSF testing, neuroimaging, EMG/NCS, exome sequencing, and mitochondrial testing. An ataxia repeat expansion panel ultimately revealed the final diagnosis. In this report, we review the clinical characteristics of a rare, late-onset, autosomal recessive cerebellar ataxia and discuss the importance of pursuing targeted gene testing to avoid diagnostic delays, especially as new treatments for this and other genetic diseases become available.


Assuntos
Ataxia Cerebelar , Degenerações Espinocerebelares , Masculino , Humanos , Pessoa de Meia-Idade , Ataxia Cerebelar/diagnóstico , Ataxia Cerebelar/genética , Ataxia , Espasticidade Muscular/diagnóstico , Espasticidade Muscular/genética , Raciocínio Clínico
15.
JAMA Ophthalmol ; 141(9): 911-912, 2023 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-37440225
16.
Mov Disord ; 38(9): 1679-1687, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37318322

RESUMO

BACKGROUND: Clinical research is limited by underrepresentation, but the impact of underrepresentation on patient-reported outcomes in Parkinson's disease (PD) is unknown. OBJECTIVES: To produce nationwide estimates of non-motor symptom (NMS) prevalence and PD-related quality of life (QOL) limitations while accounting for underrepresentation. METHODS: We performed a cross-sectional analysis of data from the Fox Insight (FI) study, an ongoing prospective longitudinal study of persons with self-reported PD. Using epidemiologic literature and United States (US) Census Bureau, Medicare, and National Health and Aging Trends Study data, we simulated a "virtual census" of the PD population. To compare the PD census to the FI cohort, we used logistic regression to model the odds of study participation and calculate predicted probabilities of participation for inverse probability weighting. RESULTS: There are an estimated 849,488 persons living with PD in the US. Compared to 22,465 eligible FI participants, non-participants are more likely to be older, female, and non-White; live in rural regions; have more severe PD; and have lower levels of education. When these predictors were incorporated into a multivariable regression model, predicted probability of participation was much higher for FI participants than non-participants, indicating a significant difference in the underlying populations (propensity score distance 2.62). Estimates of NMS prevalence and QOL limitation were greater when analyzed using inverse probability of participation weighting compared to unweighted means and frequencies. CONCLUSIONS: PD-related morbidity may be underestimated because of underrepresentation, and inverse probability of participation weighting can be used to give greater weight to underrepresented groups and produce more generalizable estimates. © 2023 International Parkinson and Movement Disorder Society.


Assuntos
Doença de Parkinson , Humanos , Feminino , Idoso , Estados Unidos/epidemiologia , Doença de Parkinson/epidemiologia , Doença de Parkinson/diagnóstico , Qualidade de Vida , Estudos Longitudinais , Estudos Prospectivos , Estudos Transversais , Medicare
17.
J Clin Neuromuscul Dis ; 24(4): 222-228, 2023 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-37219866

RESUMO

OBJECTIVES: To evaluate patient attitudes and beliefs toward thymectomy for myasthenia gravis (MG). METHODS: The Myasthenia Gravis Foundation of America administered a questionnaire to the MG Patient Registry, an ongoing longitudinal survey of adult MG patients. Questions assessed reasons for or against thymectomy and how hypothetical scenarios would have affected their decision. RESULTS: Of 621 respondents, 190 (31%) reported a history of thymectomy. Of those who underwent thymectomy for nonthymomatous MG, 97 (51.6%) ranked symptom improvement as most important and 100 (53.2%) ranked reducing medication as least important. Among 431 nonthymectomy patients, the most frequent reason for not undergoing thymectomy was that their doctor did not discuss it (152 of 431 = 35.2%) and 235 (56.8%) said that they would have considered it more strongly if their doctor spent more time discussing it. CONCLUSIONS: Thymectomies are motivated more by symptoms than by medication, and a lack of neurologist discussion is the most common barrier to thymectomy.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Miastenia Gravis , Pacientes , Sistema de Registros , Inquéritos e Questionários , Timectomia , Dados de Saúde Coletados Rotineiramente , Miastenia Gravis/epidemiologia , Miastenia Gravis/cirurgia , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Timoma/epidemiologia , Objetivos , Receptores Colinérgicos/imunologia , Autoanticorpos/análise
18.
J Neuroophthalmol ; 43(2): 149-152, 2023 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-36857136

RESUMO

BACKGROUND: Neuro-ophthalmologists have expertise in rare and complex disorders, but the ability of patients to access neuro-ophthalmic care has not been examined at a nationwide level. METHODS: Using the 2020 directory of all 502 members of the North American Neuro-Ophthalmology Society as a reference, we found the practice locations of 461 confirmed practicing members and converted each street address to latitude and longitude coordinates. We calculated the travel distance and time from each census tract to the nearest practice location and calculated population-weighted averages by state, region, and other prespecified factors. Choropleth maps were used to visualize the distribution of travel distances and times across the United States. RESULTS: California had the most practicing neuro-ophthalmologists out of any state (50), whereas 4 states (DE, MT, SD, and WY) had none. Washington, DC and MA had the most neuro-ophthalmologists per capita. The average travel distance and time to the nearest neuro-ophthalmologists were found to be 40.90 miles and 46.50 minutes, respectively, although a large portion of western plains and mountain regions had travel times of over 120 minutes. Patients in rural areas had longer travel times than those in urban areas, and Native American patients had the longest travel times of any racial or ethnic group. CONCLUSION: The travel time to see a neuro-ophthalmologist varies widely by state, region, and rurality, with Native American patients and rural patients being disproportionately affected. By identifying the areas with the greatest travel burdens, future policies can work to alleviate these potential barriers to care.


Assuntos
Oftalmologistas , Estados Unidos/epidemiologia , Humanos , Acessibilidade aos Serviços de Saúde , Viagem , Fatores de Tempo , População Rural
19.
J Neuroophthalmol ; 43(3): 359-363, 2023 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-36727709

RESUMO

BACKGROUND: To identify the frequency and etiologies of visual disturbances after cataract surgery in patients referred to Neuro-ophthalmology. METHODS: This study is a retrospective chart review. Records of patients 18 years and older referred to neuro-ophthalmology clinics for new-onset visual disturbances within 6 months of cataract surgery were reviewed. Those with pre-existing neuro-ophthalmic disorders, combined intraocular procedures with cataract surgery, or inadequate follow-up were excluded. The main outcome measures were frequency and etiologies of visual disturbances after cataract surgery. Secondary analyses of a cohort of patients who had cataract surgery at our institution were performed to determine the frequency and etiology of visual disturbances after uneventful cataract surgery. RESULTS: One hundred seventy-three patients met the inclusion criteria (internal referral: 36/173, from outside surgeons: 137/173). Sixty-one percent (106/173) were newly diagnosed with neuro-ophthalmic etiologies, including 21% (36/173) with afferent and 40% (70/173) with efferent disorders. Thirty-six percent (62/173) of patients had non neuro-ophthalmic causes and 3% (5/173) had systemic conditions responsible for visual disturbances postoperatively. Decompensated strabismus causing diplopia was the most common neuro-ophthalmic diagnosis after cataract surgery (50%, 53/106). Of the 13,715 patients who had cataract surgery performed at our institution over a 9-year period, 20 of 36 patients referred for visual disturbances were identified with neuro-ophthalmic etiologies of which 85% (17/20) had postoperative diplopia. CONCLUSIONS: In our study, decompensated strabismus causing diplopia was the most common neuro-ophthalmic visual disturbance after cataract surgery. Detailed history and ocular alignment should be assessed before cataract surgery to identify patients with the risk.


Assuntos
Catarata , Oftalmologia , Estrabismo , Humanos , Diplopia/etiologia , Estudos Retrospectivos , Transtornos da Visão/diagnóstico , Transtornos da Visão/epidemiologia , Transtornos da Visão/etiologia , Catarata/complicações
20.
J Neuroophthalmol ; 43(2): 153-158, 2023 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-36633356

RESUMO

BACKGROUND: Validated methods to identify neuro-ophthalmologists in administrative data do not exist. The development of such method will facilitate research on the quality of neuro-ophthalmic care and health care utilization for patients with neuro-ophthalmic conditions in the United States. METHODS: Using nationally representative, 20% sample from Medicare carrier files from 2018, we identified all neurologists and ophthalmologists billing at least 1 office-based evaluation and management (E/M) outpatient visit claim in 2018. To isolate neuro-ophthalmologists, the National Provider Identifier numbers of neuro-ophthalmologists in the North American Neuro-Ophthalmology Society (NANOS) directory were collected and linked to Medicare files. The proportion of E/M visits with International Classification of Diseases-10 diagnosis codes that best distinguished neuro-ophthalmic care ("neuro-ophthalmology-specific codes" or NSC) was calculated for each physician. Multiple logistic regression models assessed predictors of neuro-ophthalmology specialty designation after accounting for proportion of ophthalmology, neurology, and NSC claims and primary specialty designation. Sensitivity, specificity, and positive predictive value (PPV) for varying proportions of E/M visits with NSC were calculated. RESULTS: We identified 32,293 neurologists and ophthalmologists who billed at least 1 outpatient E/M visit claim in 2018 in Medicare. Of the 472 NANOS members with a valid individual National Provider Identifier, 399 (84.5%) had a Medicare outpatient E/M visit in 2018. The model containing only the proportion of E/M visits with NSC best predicted neuro-ophthalmology specialty designation (odds ratio 1.05 [95% confidence interval 1.04, 1.05]; P < 0.001; area under the receiver operating characteristic [AUROC] = 0.91). Model predictiveness for neuro-ophthalmology designation was maximized when 6% of all billed claims were for NSC (AUROC = 0.89; sensitivity: 84.0%; specificity: 93.9%), but PPV was low (14.9%). The threshold was unchanged when limited only to neurologists billing ≥1% ophthalmology claims or ophthalmologists billing ≥1% neurology claims, but PPV increased (33.3%). CONCLUSIONS: Our study provides a validated method to identify neuro-ophthalmologists who can be further adapted for use in other administrative databases to facilitate future research of neuro-ophthalmic care delivery in the United States.


Assuntos
Neurologia , Oftalmologistas , Oftalmologia , Idoso , Humanos , Estados Unidos , Medicare , Atenção à Saúde
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