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OBJECTIVE: Drug-resistant epilepsy can be difficult to cure and may pose emotional challenges for epilepsy providers. Neuropalliative care (NPC) can augment quality of life (QOL) in persons with neurological diseases and may add meaningful elements to the treatment repertoire of epilepsy specialists even if seizures continue. However, NPC has not been widely implemented in epilepsy. Our study aimed to determine whether physicians of persons with drug-resistant epilepsy (PWDRE) experience distress when faced with treatment failure (Engel class ≥ 2), either failure of medications-only (PWDREmo) or of both medications and surgery (procedures with curative intent (PWDREms)). Furthermore, we evaluated physician knowledge about and referrals to NPC following treatment failures to help improve patient QOL despite ongoing seizures. METHODS: An anonymous online survey was distributed to US epilepsy physicians through the American Epilepsy Society website and personal email to assess levels of distress experienced when caring for PWDREmo and PWDREms (7-point Likert scale ["1" = "no distress", "7" = "most distress ever felt"]), and knowledge and use of NPC. RESULTS: Eighty-two physicians completed the survey. Most experienced distress when epilepsy treatments failed: 59% felt moderate distress (≥4) with PWDREmo (median "4", mean 3.74, range 1-7), 90% suffered moderate to severe distress (5, 5.17, 1-7) with PWDREms. Distress over PWDREms was significantly greater than distress over PWDREmo (p < 0.0001). Forty-three percent reported confidence in their knowledge about NPC. Only 15% were likely to refer PWDREmo to NPC, while 44% would consider it for PWDREms. CONCLUSION: Among survey responders, physician distress was high when confronted with treatment failures, especially the failure of epilepsy surgery. Fewer than half of responders were likely to refer patients to NPC. Further research is necessary to determine extent, reasons, and effects of physician distress and whether improved understanding of and patient access to NPC would help alleviate physician distress when faced with treatment failures in PWDRE.
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Epilepsia Resistente a Medicamentos , Epilepsia , Médicos , Humanos , Qualidade de Vida , Epilepsia/psicologia , Epilepsia Resistente a Medicamentos/terapia , Convulsões/terapiaRESUMO
This manuscript presents the case of an adult, male patient with mal de debarquement syndrome (MdDS); results from his experimental treatment with repetitive transcranial magnetic stimulation (rTMS) are also provided. Additionally, we included a review of literature related to the neurophysiology of MdDS and its treatment with rTMS. A 41-year-old man had been experiencing symptoms of MdDS, which initially emerged following a car ride, for 11 to 12 years. Pharmacologic approaches had failed to provide symptom relief; thus, we investigated an intervention using low-frequency (1 Hz) rTMS unilaterally for 2 consecutive weeks. The outcome measures included a standardized, computerized dynamic posturography test to quantify the patient's balance and identify abnormalities in his use of the sensory systems contributing to postural control, as well as the Hospital Anxiety and Depression Scale (HADS) to measure his anxiety and depression. An rTMS treatment log was created to document any adverse events. Following rTMS, the patient's balance scores improved significantly; these improvements were mostly related to the patient's increased reliance on the visual and vestibular systems. Our patient's HADS Anxiety and Depression subscores also showed improvement post-rTMS. The presented case study provides preliminary evidence that rTMS may be a noninvasive treatment option for improving balance, specifically in individuals with MdDS. This evidence can be used to further therapeutic research on, and provide strategies for treating, MdDS.
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Estimulação Magnética Transcraniana/métodos , Doença Relacionada a Viagens , Adulto , Humanos , Masculino , Resultado do TratamentoRESUMO
Background: Longitudinal assessment of functional abilities in Parkinson's disease (PD) is needed to determine the efficacy of cognitive interventions in providing meaningful improvements in daily life. Additionally, subtle changes in instrumental activities of daily living may precede a clinical diagnosis of dementia and could aid earlier detection of and intervention for cognitive decline. Objective: The primary goal was to validate the longitudinal application of the University of California San Diego Performance-Based Skills Assessment (UPSA). An exploratory secondary goal was to determine whether UPSA may identify individuals at higher risk of cognitive decline in PD. Methods: Seventy participants with PD completed the UPSA with at least one follow-up visit. Linear mixed effects modeling was used to identify associations between baseline UPSA score and cognitive composite score (CCS) over time. Descriptive analysis of four heterogeneous cognitive and functional trajectory groups and individual case examples was performed. Results: Baseline UPSA score predicted CCS at each timepoint for functionally impaired and unimpaired groups (p < 0.01) but did not predict the rate change in CCS over time (p = 0.83). Participants displayed heterogenous trajectories in both UPSA and CCS during the follow-up period. Most participants maintained both cognitive and functional performance (n = 54), though some displayed cognitive and functional decline (n = 4), cognitive decline with functional maintenance (n = 4), and functional decline with cognitive maintenance (n = 8). Conclusion: The UPSA is a valid measure of cognitive functional abilities over time in PD. Given the heterogeneity of functional and cognitive trajectories, this performance-based assessment did not predict cognitive decline with this relatively short follow-up. Further work is needed to understand longitudinal functional assessments in PD-associated cognitive impairment.
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Introduction: Hispanics/Latinos (H/Ls) are significantly underrepresented in Alzheimer's disease (AD) research participant samples. This exclusion limits our interpretation of research findings and understanding of the causes of brain health disparities. The Engaging Communities of Hispanics/Latinos for Aging Research (ECHAR) Network was created to engage, educate, and motivate H/Ls for participation in brain aging research by addressing several barriers to inclusion, including health literacy and AD-related communication. Methods: We used a novel community-engaged method-Boot Camp Translation (BCT)-to translate medical jargon into action-based, community-relevant messages. H/L community members (n = 39) were recruited from three cities to work with local research teams and co-develop culturally responsive AD-related messaging. BCT meetings leveraged various techniques to identify key messages, the target audience for the messages, and methods to disseminate these messages. Themes were constructed collaboratively between BCT facilitators and community members as the group iteratively refined the conceptual framework and language for the main messages, with the goal to make AD messaging accessible for H/L community members. Results: H/L community members showed significant improvements in subjective understanding (Cohen's d = 0.75; P < 0.001) and objective knowledge of Alzheimer's disease (Cohen's d = 0.79; P < 0.001) at BCT completion. H/L community members identified key messages that converged for all three cities. These were related to reducing stigma, emphasizing brain health and risk mitigation, and acknowledging the impact of AD on multi-generational families/households. Participants also recommended sharing these messages with H/Ls across the lifespan using multi-media avenues. Discussion: The collaborative efforts identified culturally responsive and community-relevant messaging that may help address health literacy barriers contributing to AD-related disparities in H/L communities. HIGHLIGHTS: Hispanics/Latinos are underrepresented in Alzheimer's disease and related dementias (ADRD) research despite increased risk.Limited ADRD health literacy may act as a recruitment barrier.Boot Camp Translation (BCT) is a process that targets health communication.We carried out BCT in three cities to co-develop ADRD messaging.Results highlight regional similarities and differences in ADRD communication.
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Introduction: Cognitive impairment is a highly prevalent non-motor feature of Parkinson's disease (PD). A better understanding of the underlying pathophysiology may help in identifying therapeutic targets to prevent or treat dementia. This study sought to identify metabolic alterations in the prefrontal cortex (PFC), a key region for cognitive functioning that has been implicated in cognitive dysfunction in PD. Methods: Proton Magnetic Resonance Spectroscopy was used to investigate metabolic changes in the PFC of a cohort of cognitively normal individuals without PD (CTL), as well as PD participants with either normal cognition (PD-NC), mild cognitive impairment (PD-MCI), or dementia (PDD). Ratios to Creatine (Cre) resonance were obtained for glutamate (Glu), glutamine and glutamate combined (Glx), N-acetylaspartate (NAA), myoinositol (mI), and total choline (Cho), and correlated with cognitive scores across multiple domains (executive function, learning and memory, language, attention, visuospatial function, and global cognition) administered to the PD participants only. Results: When individuals retain cognitive capabilities, the presence of Parkinson's disease does not create metabolic disturbances in the PFC. However, when cognitive symptoms are present, PFC Glu/Cre ratios decrease with significant differences between the PD-NC and PPD groups. In addition, Glu/Cre ratios and memory scores were marginally associated, but not after Bonferroni correction. Conclusion: These preliminary findings indicate that fluctuations in prefrontal glutamate may constitute a biomarker for the progression of cognitive impairments in PD. We caution for larger MRS investigations of carefully defined PD groups.