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1.
J Palliat Med ; 24(12): 1877-1883, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34704853

RESUMO

Stroke is a common cause of long-term disability and death, which leaves many patients with significant and unique palliative care (PC) needs. Shared decision-making for patients with stroke poses distinct challenges due to the sudden nature of stroke, the uncertainty inherent in prognostication around recovery, and the common necessity of relying on surrogates for decision-making. Patients with stroke suffer from frequently underrecognized symptoms, which PC clinicians should feel comfortable identifying and treating. This article provides 10 tips for palliative clinicians to increase their knowledge and comfort in caring for this important population.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Acidente Vascular Cerebral , Tomada de Decisão Compartilhada , Humanos , Cuidados Paliativos , Acidente Vascular Cerebral/terapia , Incerteza
2.
Neurol Clin Pract ; 11(1): 43-48, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-33968471

RESUMO

OBJECTIVE: To identify health states that patients with acute stroke deem worse than death and to explore potential predictors for these ratings. METHODS: This was a cross-sectional study involving patients admitted to an urban comprehensive stroke center with acute stroke. Participants were asked to rate 10 possible health states/functional outcomes as better or worse than death using a 5-point Likert scale. Principal component analysis (PCA) was used to reduce clusters of correlated ratings to summary components (factors). These components were then analyzed using linear regression to identify possible predictive variables. RESULTS: Eighty patients participated. The states deemed equal to or worse than death by the majority of participants were relying on a breathing machine (66%) or feeding tube (66%), persistent confusion (62%), inability to communicate with others (58%), and bowel/bladder incontinence (50%). PCA revealed 2 factors of correlated variables: factor 1 composed primarily of relying on a feeding tube or breathing machine, incontinence, chronic pain, and persistent confusion, and factor 2 composed primarily of using a wheelchair, being bedbound, living in a nursing home, and requiring help for activities of daily living. The only significant predictor found was race for factor 1, with black participants finding these states more preferable to death than white participants. DISCUSSION: A substantial number of patients found multiple common outcomes of stroke to be the same as or worse than death. This highlights the importance of realistic discussions about expected functional outcomes with patients and/or their surrogate decision makers when considering goals of care after stroke.

3.
J Palliat Med ; 24(3): 457-458, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33650917
4.
Neurohospitalist ; 10(2): 118-120, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-32373275

RESUMO

Clinical diagnosis often focuses on identifying the single cause of a patient's symptoms but it is becoming increasingly recognized that a subset of patients exist where 2 pathological entities coexist. These patients present a particular diagnostic challenge because the first "positive" diagnostic test is not the definitive stopping point in their evaluation. Here, we present the case of a 47-year-old woman with multiple cranial neuropathies and a polyradiculopathy. A significant pleocytosis in the cerebrospinal fluid sparked a broad evaluation which revealed pathologic evidence of sarcoidosis and molecular evidence of neurofascin (NF)-155 and NF-140 antibodies. The pathogenic contribution of these 2 pathologic entities, or interaction, to this patient's case is not clear. Nevertheless, the patient responded robustly to steroids and symptoms significantly improved. This case is a demonstration of the balance between Occam's razor and Hickam's dictum in clinical practice.

5.
J Palliat Med ; 23(6): 842-847, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32101493

RESUMO

Amyotrophic lateral sclerosis (ALS) is a rapidly progressive and fatal neurodegenerative disorder with enormous palliative care (PC) needs that begin at the time of diagnosis. Although it is an uncommon disease, clinicians who work in PC or hospice are likely to encounter ALS somewhat frequently given the needs of patients with ALS with regard to psychosocial support, symptom management, advance care planning (ACP), caregiver support, and end-of-life care. As such, PC clinicians should be familiar with the basic principles of ALS symptoms, treatments, disease course, and issues around ACP. This article, written by a team of neurologists and PC physicians, seeks to provide PC clinicians with tips to improve their comfort and skills caring for patients with ALS and their families.


Assuntos
Esclerose Lateral Amiotrófica , Cuidados Paliativos na Terminalidade da Vida , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Esclerose Lateral Amiotrófica/terapia , Humanos , Cuidados Paliativos
6.
JAMA Netw Open ; 2(4): e192970, 2019 04 05.
Artigo em Inglês | MEDLINE | ID: mdl-31026032

RESUMO

Importance: Affordable, quantitative methods to screen children for developmental delays are needed. Motor milestones can be an indicator of developmental delay and may be used to track developmental progress. Accelerometry offers a way to gather real-world information about pediatric motor behavior. Objective: To develop a referent cohort of pediatric accelerometry from bilateral upper extremities (UEs) and determine whether movement can accurately distinguish those with and without motor deficits. Design, Setting, and Participants: Children aged 0 to 17 years participated in a prospective cohort from December 8, 2014, to December 29, 2017. Children were recruited from Ranken Jordan Pediatric Bridge Hospital, Maryland Heights, Missouri, and Washington University School of Medicine in St Louis, St Louis, Missouri. Typically developing children were included as a referent cohort if they had no history of motor or neurological deficit; consecutive sampling and matching ensured equal representation of sex and age. Children with diagnosed asymmetric motor deficits were included in the motor impaired cohort. Exposures: Bilateral UE motor activity was measured using wrist-worn accelerometers for a total of 100 hours in 25-hour increments. Main Outcomes and Measures: To characterize bilateral UE motor activity in a referent cohort for the purpose of detecting irregularities in the future, total activity and the use ratio between UEs were used to describe typically developing children. Asymmetric impairment was classified using the mono-arm use index (MAUI) and bilateral-arm use index (BAUI) to quantify the acceleration of unilateral movements. Results: A total of 216 children enrolled, and 185 children were included in analysis. Of these, 156 were typically developing, with mean (SD) age 9.1 (5.1) years and 81 boys (52.0%). There were 29 children in the motor impaired cohort, with mean (SD) age 7.4 (4.4) years and 16 boys (55.2%). The combined MAUI and BAUI (mean [SD], 0.86 [0.005] and use ratio (mean [SD], 0.90 [0.008]) had similar F1 values. The area under the curve was also similar between the combined MAUI and BAUI (mean [SD], 0.98 [0.004]) and the use ratio (mean [SD], 0.98 [0.004]). Conclusions and Relevance: Bilateral UE movement as measured with accelerometry may provide a meaningful metric of real-world motor behavior across childhood. Screening in early childhood remains a challenge; MAUI may provide an effective method for clinicians to measure and visualize real-world motor behavior in children at risk for asymmetrical deficits.


Assuntos
Acelerometria/estatística & dados numéricos , Deficiências do Desenvolvimento/diagnóstico , Extremidade Superior/fisiopatologia , Acelerometria/métodos , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Atividade Motora , Movimento , Estudos Prospectivos , Valores de Referência , Reprodutibilidade dos Testes
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