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Community-based palliative care is defined as palliative care delivered outside of the hospital and outpatient clinics. These settings include the home, nursing homes, day programs, volunteer organizations, and support groups. There is strong evidence outside of the neuropalliative context that community-based palliative care can reduce hospital costs and admissions at the end of life. Research that focuses on specialized community-based palliative care for neurologic disease have similar findings, although with significant variability across conditions and geographic locations. Several of these studies have investigated home-based care for neurologic conditions including dementia, Parkinson's disease, multiple sclerosis, brain tumors, and motor neuron disease. Other work has focused on incorporating palliative care models into the treatment of patients with neurologic diseases within nursing home settings. Similar to nonneurologic community-based palliative care, little has been published on patient and caregiver quality-of-life outcomes in such models of care, although the emerging data are generally positive. Future studies should explore how best to provide comprehensive, cost-effective, scalable, and replicable models of community-based neuropalliative care, patient and caregiver outcomes in such models, and how care can be adapted between and within specific patient populations and healthcare systems.
Assuntos
Doenças do Sistema Nervoso , Doença de Parkinson , Assistência Terminal , Humanos , Cuidados Paliativos , Cuidadores , Doenças do Sistema Nervoso/terapia , Qualidade de VidaRESUMO
Background and Objectives: Huntington disease (HD) is an inherited neurodegenerative condition associated with varying degrees of motor, cognitive, and behavioral abnormalities. Although aggression, irritability, lack of insight, and poor impulse are well-recognized nonmotor manifestations of the disease, very little is known about their association with criminality, which is broadly defined as acts that are punishable by law. Methods: We explored the prevalence of criminality in patients with HD seen between January 1, 2017, and December 31, 2021, within a large academic medical center in the state of Illinois. To determine rates of criminality, we examined "criminal behavior" (defined as illegal actions that do not necessarily lead to criminal prosecution) through a retrospective medical record review of keywords or phrases related to criminality. We also examined "crime" (defined as the presence of a criminal record) in this same sample of patients through a search of official publicly available online databases from the state of Illinois and the federal government. Results: Of the 210 patients included, 97 (46.2%) had criminal behavior documented in their medical records. Based on public database information, 89 patients (42.4%) had a criminal record and 26 patients (12.4%) had been arrested. Traffic violations were committed by 94.4% of the cohort and were the most common infractions. Most of these violations were petty offenses and only punishable by fines. Physical aggression toward caregivers was the most common criminal behavior identified in medical records. This tended to occur in advance stages of the disease and rarely led to criminal charges. Crime occurred at any point in the disease course of HD, including before and after the development of clinical signs and the formal diagnosis of HD. Discussion: The presence of criminality was not infrequent in our cohort, but rarely did this result in criminal charges and rarely did these charges result in arrests or incarcerations. Discussions surrounding driving safety and management of physical aggression toward caregivers should be part of regular outpatient visits with patients with HD. Ultimately, it is unknown whether criminality is a common feature of HD, and assessments need to be developed to determine its true prevalence.
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BACKGROUND: Functional movement disorders (FMD) are characterized by abnormal movements and motor symptoms incongruent with a known structural neurologic cause. While psychological stressors have long been considered an important risk factor for developing FMD, little is known about the impact of psychiatric comorbidities on disease manifestations or complexity. OBJECTIVES: To compare characteristics of FMD patients with co-occurring mood and trauma-related psychiatric conditions to FMD patients without psychiatric conditions. METHODS: We performed a retrospective cohort study of patients seen in the University of Colorado Health system between January 1, 2015 and December 31, 2019. Patients were included if they had a diagnosis of FMD, determined by ICD-10 coding and ≥1 phenomenology-related diagnostic code (tremor, gait disturbances, ataxia, spasms, and weakness), and at least one encounter with a neurology specialist. Fisher's exact and unpaired t-tests were used to compare demographics, healthcare utilization, and phenomenologies of patients with psychiatric conditions to those with none. RESULTS: Our review identified 551 patients with a diagnosis of FMD who met inclusion criteria. Patients with psychiatric conditions (N = 417, 75.7%) had increased five-year healthcare utilization (mean emergency room encounters 9.9 vs. 3.5, P = 0.0001) and more prevalent non-epileptic seizures (18.2% vs. 7.5%, P = 0.001). Suicidal ideation (8.4%) and self-harm (4.1%) were only observed amongst patients with comorbid psychiatric conditions. CONCLUSIONS: Patients with FMD and comorbid psychiatric conditions require more healthcare resources and have greater disease complexity than patients without psychiatric illness. This may have implications for treatment of patients without comorbid psychiatric conditions who may benefit from targeted physiotherapy alone.
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BACKGROUND: TikTok is a social media platform where users create and share videos. During the COVID-19 pandemic, the use of this site greatly expanded. Tic and Tourette syndrome content also increased dramatically along with the number of patients with tics in neurology clinics. OBJECTIVES: We compared the phenomenology of "TikTok tics" to typical tic disorders. We chose to analyze the most widely viewed videos and therefore focused on the most popular content creators. METHODS: Videos with the keywords "tic," "Tourette," or "tourettes" were reviewed to identify content creators between March 11, 2020 and March 30, 2021. We performed a quantitative assessment of TikTok tics as well as a descriptive analysis of the entire series of videos of each content creator. RESULTS: The mean age of the cohort was 18.8 years old, and the majority were women. Unlike the predominance of facial movements in typical tics, arm movements were most frequent. Average tics per minute was 29, and almost all recorded TikTok tics were severe, causing significant disability. Whereas coprolalia and self-injurious behavior are only infrequently encountered in typical tic disorders, they were present in the overwhelming majority of TikTok subjects. CONCLUSIONS: TikTok tics are distinct from what is typically seen in patients with Tourette syndrome, although share many characteristics with functional tics. We believe this to be an example of mass sociogenic illness, which involves behaviors, emotions, or conditions spreading spontaneously through a group. A modern clinician needs to remain abreast of social media sources as knowledge of media content is essential in managing patients in the current environment.