Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 186
Filtrar
1.
NPJ Parkinsons Dis ; 10(1): 158, 2024 Aug 15.
Artículo en Inglés | MEDLINE | ID: mdl-39147806

RESUMEN

Disease-modifying therapeutics in the α-synucleinopathies multiple system atrophy (MSA) and Parkinson's Disease (PD) are in early phases of clinical testing. Involving patients' preferences including therapy-associated risk willingness in initial stages of therapy development has been increasingly pursued in regulatory approval processes. In our study with 49 MSA and 38 PD patients, therapy-associated risk willingness was quantified using validated standard gamble scenarios for varying severities of potential drug or surgical side effects. Demonstrating a non-gaussian distribution, risk willingness varied markedly within, and between groups. MSA patients accepted a median 1% risk [interquartile range: 0.001-25%] of sudden death for a 99% [interquartile range: 99.999-75%] chance of cure, while PD patients reported a median 0.055% risk [interquartile range: 0.001-5%]. Contrary to our hypothesis, a considerable proportion of MSA patients, despite their substantially impaired quality of life, were not willing to accept increased therapy-associated risks. Satisfaction with life situation, emotional, and nonmotor disease burden were associated with MSA patients' risk willingness in contrast to PD patients, for whom age, and disease duration were associated factors. An individual approach towards MSA and PD patients is crucial as direct inference from disease (stage) to therapy-associated risk willingness is not feasible. Such studies may be considered by regulatory agencies in their approval processes assisting with the weighting of safety aspects in a patient-centric manner. A systematic quantitative assessment of patients' risk willingness and associated features may assist physicians in conducting individual consultations with patients who have MSA or PD by facilitating communication of risks and benefits of a treatment option.

2.
J Neurol ; 2024 Jul 06.
Artículo en Inglés | MEDLINE | ID: mdl-38969876

RESUMEN

INTRODUCTION: In 2023, the German Society of Neurology published a new guideline on Parkinson's disease. An important section dealt with PD care concepts, which represent a particularly dynamic field of PD research, including their implementation in clinical practice. Parkinson's disease is the second most common age-associated neurodegenerative disease. Current estimates of the number of cases in the population describe a significant increase in prevalence in Germany by 2030 with higher proportions in rural areas, which also have a lack of sufficient PD care resources. RECOMMENDATIONS: In comparison with other international guidelines, which have so far mentioned palliative care and Parkinson's nurses in particular, the German S2k guideline expands the recommended concepts of PD care to include PD day clinics, inpatient complex treatment, and PD networks. CONCLUSION: Concepts of PD care guidelines are necessary because of the complex and rapidly evolving field of PD care provision. If applied appropriately, the potential for optimized care can be exploited and both the patient burden and the economic burden can be reduced. Given that modern care concepts have so far only been applied in a few regions, it is often impossible to generate broad evidence-based data, so that the evaluation of PD care concepts is partly dependent on expert opinion.

3.
Mov Disord ; 2024 Jul 26.
Artículo en Inglés | MEDLINE | ID: mdl-39056204

RESUMEN

OBJECTIVE: The Progressive Supranuclear Palsy quality of life scale (PSP-QoL) has been shown to be a useful tool for capturing health-related quality of life of patients in "everyday life" and in progressive supranuclear palsy (PSP) research. However, at 45 items in length, the questionnaire can take a long time, exhausting PSP patients, in particular if cognitive impaired, which can have a negative impact on the assessment. The aim of this study was to establish a condensed version of the PSP-QoL for research and routine clinical care. METHODS: In this retrospective study, data originating from a German cohort of PSP patients was analyzed. Data from 245 PSP patients were included in this study. The short PSP-QoL questionnaire was created using a two-factor solution and item-total and inter-item correlations for mental and physical aspects of daily living of the PSP-QoL followed by confirmatory factor analysis. RESULTS: The final scale included 12 items representing mental (five items) and physical symptoms (seven items). The specified two-factor model displayed an excellent fit in the confirmatory factor analysis. The short Progressive Supranuclear Palsy Quality of Life scale (PSP-ShoQoL) correlated moderately with the PSP Rating Scale (r [243] = 0.514, P < 0.001) and Geriatric depression scale (r [231] = 0.548, P < 0.001). Sensitivity to change confirmed a significant decrease in QoL after 12 months. DISCUSSION: In this study, we created a 12-item PSP-ShoQoL designed to "facilitate" daily clinical work that correlated strongly with the PSP-QoL and was sensitive to change. © 2024 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.

4.
BMC Neurol ; 24(1): 208, 2024 Jun 18.
Artículo en Inglés | MEDLINE | ID: mdl-38890614

RESUMEN

BACKGROUND: Parkinson's disease (PD) significantly impacts the health-related quality of life of affected individuals and their relatives. In order to support the affected individuals and their families in coping with PD, it is essential to offer comprehensive information about their experiences. A comprehensive understanding of their lived experiences with the disease, the healthcare system, applied self-management strategies and their needs is considered crucial for developing a PD support program. Therefore, we aimed to explore the lived experiences and support needs of individuals with PD and their relatives in Germany. METHODS: This non-interventional, qualitative study conducted an explorative status quo and needs assessment. It generated knowledge through semi-structured focus groups and interviews with individuals with PD at various disease stages and their relatives. The interviews were digitally recorded, transcribed verbatim, and analysed using content analysis. RESULTS: Fifty-two individuals with PD and 29 relatives participated in eight focus groups and 13 paired and 13 individual interviews. Four themes with corresponding subthemes emerged: (1) experiences, revealing individuals' experiences around their diagnosis and with disease-specific care provision; (2) management support offers, clarifying who provides support and the type of support offered; (3) self-management, including comprehensibility, meaningfulness and manageability; and (4) future needs, differentiating between deficits and needs. Most participants expressed a sense of abandonment when obtaining self-management strategies and mastering their lives with PD, often referred to as 'life 2.0'. They identified the lack of structured and adequate provision of information, system orientation and social awareness. CONCLUSIONS: In Germany, there is an urgent need for a comprehensive PD care program that addresses the needs of individuals with PD and their relatives from the start of their care trajectory. It could assist individuals in gaining a comprehensive understanding of the disease, obtaining self-management strategies, building a support network, and becoming experts in self-managing their disease. Moreover, it may positively influence their care trajectory and reduce burdens, such as overburdening, fear of progression, and health anxiety. TRIAL REGISTRATION: German Clinical Studies Register ( https://www.drks.de/DRKS00030090 , No. DRKS00030090, Date of registration: 15.12.2022).


Asunto(s)
Familia , Enfermedad de Parkinson , Investigación Cualitativa , Automanejo , Humanos , Masculino , Alemania/epidemiología , Enfermedad de Parkinson/terapia , Enfermedad de Parkinson/psicología , Femenino , Automanejo/métodos , Automanejo/psicología , Persona de Mediana Edad , Anciano , Familia/psicología , Grupos Focales/métodos , Adulto , Manejo de la Enfermedad , Evaluación de Necesidades , Apoyo Social , Anciano de 80 o más Años , Calidad de Vida/psicología , Cuidadores/psicología , Necesidades y Demandas de Servicios de Salud
5.
Scand J Trauma Resusc Emerg Med ; 32(1): 40, 2024 May 10.
Artículo en Inglés | MEDLINE | ID: mdl-38730289

RESUMEN

BACKGROUND: Pre-hospital endotracheal intubation (ETI) is a sophisticated procedure with a comparatively high failure rate. Especially, ETI in confined spaces may result in higher difficulty, longer times, and a higher failure rate. This study analyses if Helicopter Emergency Medical Services (HEMS) intubation (time-to) success are influenced by noise, light, and restricted space in comparison to ground intubation. Available literature reporting these parameters was very limited, thus the reported differences between ETI in helicopter vs. ground by confronting parameters such as time to secure airway, first pass success rate and Cormack-Lehane Score were analysed. METHODS: A systematic review and meta-analysis were conducted using PUBMED, EMBASE, Cochrane Library, and Ovid on October 15th, 2022. The database search provided 2322 studies and 6 studies met inclusion and quality criteria. The research was registered with the International Prospective Register of Systematic Reviews (CRD42022361793). RESULTS: A total of six studies were selected and analysed as part of the systematic review and meta-analysis. The first pass success rate of ETI was more likely to fail in the helicopter setting as compared to the ground (82,4% vs. 87,3%), but the final success rate was similar between the two settings (96,8% vs. 97,8%). The success rate of intubation in literature was reported higher in physician-staffed HEMS than in paramedic-staffed HEMS. The impact of aircraft type and location inside the vehicle on intubation success rates was inconclusive across studies. The meta-analysis revealed inconsistent results for the mean duration of intubation, with one study reporting shorter intubation times in helicopters (13,0s vs.15,5s), another reporting no significant differences (16,5s vs. 16,8s), and a third reporting longer intubation times in helicopters (16,1s vs. 15,0s). CONCLUSION: Further research is needed to assess the impact of environmental factors on the quality of ETI on HEMS. While the success rate of endotracheal intubation in helicopters vs. on the ground is not significantly different, the duration and time to secure the airway, and Cormack-Lehane Score may be influenced by environmental factors. However, the limited number of studies reporting on these factors highlights the need for further research in this area.


Asunto(s)
Ambulancias Aéreas , Servicios Médicos de Urgencia , Intubación Intratraqueal , Intubación Intratraqueal/métodos , Humanos , Servicios Médicos de Urgencia/métodos
7.
Neurol Res Pract ; 6(1): 26, 2024 May 09.
Artículo en Inglés | MEDLINE | ID: mdl-38720388

RESUMEN

Flexible endoscopic evaluation of swallowing (FEES) is one of the most important methods for instrumental swallowing evaluation. The most challenging part of the examination consists in the interpretation of the various observations encountered during endoscopy and in the deduction of clinical consequences. This review proposes the framework for an integrated FEES-report that systematically moves from salient findings of FEES to more advanced domains such as dysphagia severity, phenotypes of swallowing impairment and pathomechanisms. Validated scales and scores are used to enhance the diagnostic yield. In the concluding part of the report, FEES-findings are put into the perspective of the clinical context. The potential etiology of dysphagia and conceivable differential diagnoses are considered, further diagnostic steps are proposed, treatment options are evaluated, and a timeframe for re-assessment is suggested. This framework is designed to be adaptable and open to continuous evolution. Additional items, such as novel FEES protocols, pathophysiological observations, advancements in disease-related knowledge, and new treatment options, can be easily incorporated. Moreover, there is potential for customizing this approach to report on FEES in structural dysphagia.

8.
J Crit Care ; 82: 154808, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38581884

RESUMEN

PURPOSE: The aim of our study was to assess if PES before extubation can minimize the extubation failure risk in orally intubated, mechanically ventilated stroke patients at high risk of severe dysphagia. MATERIALS AND METHODS: Thirty-two ICU patients were prospectively enrolled in this study presenting with a high risk for dysphagia as defined by a DEFISS (Determine Extubation Failure In Severe Stroke) risk score and compared 1:1 to a retrospective matched patient control group. The prospective patient group received PES prior to extubation. Endpoints were need for reintubation, swallowing function as assessed with FEES, pneumonia incidence and length of stay after extubation. RESULTS: Post-extubation, the Fiberoptic Endoscopic Dysphagia Severity Score (FEDSS, 4.31 ± 1.53vs.5.03 ± 1.28;p = 0.047) and reintubation rate within 72 h (9.4vs.34.4%;p = 0.032) were significantly lower in the PES group than in the historical control group. Pulmonary infections after extubation were less common in PES-treated patients although this difference was not significant (37.5vs.59.4%;p = 0.133). Time from extubation to discharge was significantly shorter after PES compared with the control group (14.09 ± 11.58vs.26.59 ± 20.49 days;p = 0.003). CONCLUSIONS: In orally intubated and mechanically ventilated stroke patients at high risk of severe dysphagia, PES may improve swallowing function, reduce extubation failure risk and decrease time from extubation to discharge. Further research is required.


Asunto(s)
Extubación Traqueal , Trastornos de Deglución , Accidente Cerebrovascular , Humanos , Masculino , Femenino , Extubación Traqueal/efectos adversos , Trastornos de Deglución/terapia , Trastornos de Deglución/etiología , Anciano , Accidente Cerebrovascular/complicaciones , Estudios Prospectivos , Respiración Artificial/efectos adversos , Persona de Mediana Edad , Terapia por Estimulación Eléctrica/métodos , Tiempo de Internación , Unidades de Cuidados Intensivos , Faringe , Intubación Intratraqueal/efectos adversos , Estudios Retrospectivos , Desconexión del Ventilador
9.
Nervenarzt ; 95(8): 697-703, 2024 Aug.
Artículo en Alemán | MEDLINE | ID: mdl-38630301

RESUMEN

Disorders of the gastrointestinal tract in patients suffering from hypokinetic movement disorders, and in particular Parkinson's disease, have increasingly been the subject of more intensive neuromedical research. So far, few data are available for patients with hyperkinetic movement disorders and ataxias. This review article summarizes the currently available and relevant publications on this topic. The particular focus is on essential tremor, restless legs syndrome, Huntington's disease and the group of hereditary ataxias. Further intensive research will be necessary in the future to collect detailed information also for these disease symptoms about specific disturbance patterns, in order to understand the underlying pathological pathways and to derive specific treatment approaches.


Asunto(s)
Enfermedades Gastrointestinales , Trastornos del Movimiento , Humanos , Enfermedades Gastrointestinales/diagnóstico , Enfermedades Gastrointestinales/terapia , Trastornos del Movimiento/diagnóstico , Trastornos del Movimiento/fisiopatología , Trastornos del Movimiento/terapia , Hipercinesia/diagnóstico , Ataxia/diagnóstico , Ataxia/terapia , Ataxia/fisiopatología , Enfermedad de Huntington/diagnóstico , Enfermedad de Huntington/terapia , Enfermedad de Huntington/fisiopatología , Síndrome de las Piernas Inquietas/diagnóstico , Síndrome de las Piernas Inquietas/terapia , Temblor Esencial/diagnóstico , Temblor Esencial/fisiopatología , Temblor Esencial/terapia
10.
BMC Geriatr ; 24(1): 347, 2024 Apr 17.
Artículo en Inglés | MEDLINE | ID: mdl-38627620

RESUMEN

BACKGROUND: The Comprehensive Geriatric Assessment (CGA) records geriatric syndromes in a standardized manner, allowing individualized treatment tailored to the patient's needs and resources. Its use has shown a beneficial effect on the functional outcome and survival of geriatric patients. A recently published German S1 guideline for level 2 CGA provides recommendations for the use of a broad variety of different assessment instruments for each geriatric syndrome. However, the actual use of assessment instruments in routine geriatric clinical practice and its consistency with the guideline and the current state of literature has not been investigated to date. METHODS: An online survey was developed by an expert group of geriatricians and sent to all licenced geriatricians (n = 569) within Germany. The survey included the following geriatric syndromes: motor function and self-help capability, cognition, depression, pain, dysphagia and nutrition, social status and comorbidity, pressure ulcers, language and speech, delirium, and frailty. Respondents were asked to report which geriatric assessment instruments are used to assess the respective syndromes. RESULTS: A total of 122 clinicians participated in the survey (response rate: 21%); after data cleaning, 76 data sets remained for analysis. All participants regularly used assessment instruments in the following categories: motor function, self-help capability, cognition, depression, and pain. The most frequently used instruments in these categories were the Timed Up and Go (TUG), the Barthel Index (BI), the Mini Mental State Examination (MMSE), the Geriatric Depression Scale (GDS), and the Visual Analogue Scale (VAS). Limited or heterogenous assessments are used in the following categories: delirium, frailty and social status. CONCLUSIONS: Our results show that the assessment of motor function, self-help capability, cognition, depression, pain, and dysphagia and nutrition is consistent with the recommendations of the S1 guideline for level 2 CGA. Instruments recommended for more frequent use include the Short Physical Performance Battery (SPPB), the Montreal Cognitive Assessment (MoCA), and the WHO-5 (depression). There is a particular need for standardized assessment of delirium, frailty and social status. The harmonization of assessment instruments throughout geriatric departments shall enable more effective treatment and prevention of age-related diseases and syndromes.


Asunto(s)
Trastornos de Deglución , Delirio , Fragilidad , Humanos , Anciano , Fragilidad/diagnóstico , Fragilidad/epidemiología , Fragilidad/terapia , Evaluación Geriátrica/métodos , Dolor , Encuestas y Cuestionarios
SELECCIÓN DE REFERENCIAS
DETALLE DE LA BÚSQUEDA
...