Pediatric and perinatal palliative care development has received particular attention in the Czech Republic in recent years. As part of the cooperation project of clinics in developing comprehensive care in the perinatal period, this area has been the focus of attention in the Perinatology Intensive Care Centre at the General University Hospital in Prague. In addition to broad educational activities, a questionnaire study with two parts – semi-quantitative and qualitative – was conducted to describe the respondents' perceptions of the importance of perinatal palliative care topics and assess their practice in providing care. Respondents to the questionnaire PRIMA were from various professions and leadership roles in different departments and across specialties in the perinatology center.
Rozvoji dětské a perinatální paliativní péče je v České republice věnována v posledních letech zvláštní pozornost. V rámci projektu spolupráce klinik při rozvoji komplexní péče v perinatálním období se na tuto oblast zaměřuje pozornost i v perinatologickém centru intenzivní péče ve Všeobecné fakultní nemocnici v Praze. Kromě širokých edukačních aktivit proběhla také dotazníková studie zaměřená na vnímání respondentů ohledně důležitosti témat perinatální paliativní péče a posouzení vlastní praxe při poskytování péče. Respondenty semikvantitativní a kvalitativní dotazníkové studie s použitím dotazníku PRIMA byli zástupci různých profesí ve vedoucích rolích na jednotlivých odděleních a napříč odbornostmi perinatologického centra.
Při poskytování perinatální paliativní péče je nezbytná spolupráce mnohých odborností. Vnímání a porozumění možnostem a současným nástrojům specializované paliativní péče se mezi odbornostmi i jednotlivými profesionály liší. Potřebný validovaný dotazník, který by vnímání mapoval, v českém i v mezinárodním prostředí dosud chybí. Předkládáme proto dotazník pro expertní vícedoménové hodnocení perinatální paliativní péče (Palliative peRInatal Multidomain Assessment [PRIMA]). Dotazník prošel dvoukolovou externí validací a hodnocením vnitřní konzistence (Cronbachovo α pro celý dotazník 0.799 [95% konfidenční interval 0.550–0.878], pro podotázky na aktuální stav 0.767 [0.544–0.877] a podotázky na ideální stav 0.867 [0.763–0.916]).
Perinatal palliative care is based on the cooperation of multiple workers with multiple areas of expertise. Perceptions and understanding of the possibilities and current tools of specialised palliative care vary between specialties and between professionals. The necessary validated questionnaire, which would map the perception of individual health professionals in the Czech and international environment, is still missing. The Palliative peRInatal Multidomain Assessment (PRIMA) questionnaire is presented and externally validated in a two-round process. Internal consistency is calculated (Cronbach’s α for the whole questionnaire, for the subset of items about the actual state, and the subset of items about the ideal state is 0.799 [95% confidence interval 0.550–0.878], 0.767 [0.544–0.877], and 0.867 [0.763–0.916] respectively).
V oblasti paliativní péče zastávají všeobecné sestry důležitou roli v péči o pacienty a jejich rodiny. Tato studie se zaměřuje na intervence všeobecných sester v konziliárním týmu paliativní péče na Klinice paliativní medicíny VFN a 1. LF UK v Praze. Pomocí deskriptivní analýzy intervencí provedených během roku 2022 mapuje činnost sester a identifikuje jejich hlavní úlohy v tomto specifickém kontextu. Výsledky ukazují, že sestry se podílely na více než polovině všech intervencí, přičemž 75 % z nich provedly sestry samostatně. Nejčastěji prováděnou intervencí byl odběr hodnotové anamnézy a screening potřeb pacientů. Hlavní role sester byla identifikována v komunikaci, koordinaci péče, advokacii a edukaci pacientů. Zjištění dokládá nutnost kontinuálního rozšiřování kompetencí sester v oblasti paliativní medicíny a zdůrazňuje důležitost specializovaného vzdělávání a tréninku, které mohou přispět ke zlepšení kvality poskytované péče v nemocnicích. Studie zároveň podtrhuje potřebu začlenění těchto dovedností do pregraduální výuky.
General nurses, particularly those in palliative care, play a pivotal role in patient and family care. This study, conducted at the Department of Palliative Medicine, General University Hospital and 1st Faculty of Medicine, Charles University in Prague, focuses on the role of general nurses within the palliative care consultation team. By conducting a descriptive analysis of the interventions performed by nurses during 2022, it maps the activities of nurses and identifies their primary roles in this specific context. The results show that nurses were involved in more than half of all interventions, and 75 % performed independently. The most common interventions were values-based history-taking and need assessment, with nurses' prominent roles including communication, care coordination, advocacy, and patient education. The results demonstrate the expansion of nurses' competencies in palliative care, underscoring the urgent need for specialized education and training. This is crucial to improve the quality of care provided in hospitals. The study also emphasizes the need to integrate these skills into undergraduate education, further highlighting the importance of this issue.
Aim: In patients with severe illnesses, particularly in situations of unfavorable prognosis, it is essential to consider and decide on the appropriateness of further treatment. The ability to conduct a values-oriented conversation is crucial for providing care that aligns with the patient's values and preferences. Values History Taking (VHT) should be included in the curriculum of medical schools. Method: A questionnaire survey mapping the attitudes of internal medicine educators at the 1st Faculty of Medicine, Charles University, and the Faculty of Medicine in Plzeň, Charles University, regarding the significance, experiences, potential benefits, and barriers of incorporating value history taking into the teaching of standard medical history interviews. Results: A total of 123 questionnaires were evaluated in the study. Currently, value history taking, as well as its individual elements, are not widely integrated into medical education or practice. However, most physicians (83%) consider it very important. Among the potential benefits, they see higher patient and family satisfaction, greater ability to respect the patient's wishes, and the potential reduction in the number of unplanned or unwanted rehospitalizations towards the end of life. Conclusion: The positive attitude of educators supports the need for the integration of value history taking into both education and routine clinical practice. Value history taking becomes a part of the structured medical history interview in the subject of Internal Propaedeutics and Internal Medicine at the 1st Faculty of Medicine, Charles University, and the Faculty of Medicine in Plzeň, Charles University.
AIM OF THE STUDY: Comparative cross-sectional study of retinal parameters in Huntington's disease and their evaluation as marker of disease progression. CLINICAL RATIONALE FOR THE STUDY: Huntington's disease (HD) is a neurodegenerative disorder with dominant motor and neuropsychiatric symptoms. Involvement of sensory functions in HD has been investigated, however studies of retinal pathology are incongruent. Effect sizes of previous findings were not published. OCT data of the subjects in previous studies have not been published. Additional examination of structural and functional parameters of retina in larger sample of patients with HD is warranted. MATERIALS AND METHODS: This is a prospective cross-sectional study that included: peripapillary retinal nerve fiber layer thickness (RNFL) and total macular volume (TMV) measured by spectral domain optical coherence tomography (OCT) of retina, Pelli-Robson Contrast Sensitivity test, Farnsworth 15 Hue Color discrimination test, ophthalmology examination and Unified Huntington's disease Rating Scale (UHDRS). Ninety-four eyes of 41 HD patients examined in total 47 visits and 82 eyes of 41 healthy controls (HC) examined in total 41 visits were included. Analyses were performed by repeated measures linear mixed effects model with age and gender as covariates. False discovery rate was corrected by Benjamini-Hochberg procedure. RESULTS: HD group included 21 males and 20 females (age 50.6±12.0 years [mean ± standard deviation], disease duration 7.1±3.6 years, CAG triplet repeats 44.1±2.4). UHDRS Total Motor Score (TMS) was 30.0±12.3 and Total Functional Capacity 8.2±3.2. Control group (HC) included 19 males and 22 females with age 48.2±10.3 years. There was no statistically significant difference between HD and HC in age. The effect of the disease was not significant in temporal segment RNFL thickness. It was significant in the mean RNFL thickness and TMV, however not passing false discovery rate adjustment and with small effect size. In the HD group, the effect of disease duration and TMS was not significant. The Contrast Sensitivity test in HD was within normal limits and the 15-hue-test in HD did not reveal any specific pathology. CONCLUSIONS: The results of our study support possible diffuse retinal changes in global RNFL layer and in macula in Huntington's disease, however, these changes are small and not suitable as a biomarker for disease progression. We found no other structural or functional changes in retina of Huntington's disease patients using RNFL layer and macular volume spectral domain OCT and Contrast Sensitivity Test and 15-hue-test. CLINICAL IMPLICATIONS: Current retinal parameters are not appropriate for monitoring HD disease progression.
- MeSH
- biologické markery MeSH
- dospělí MeSH
- Huntingtonova nemoc * patologie MeSH
- lidé středního věku MeSH
- lidé MeSH
- nervová vlákna patologie MeSH
- optická koherentní tomografie * metody MeSH
- progrese nemoci MeSH
- prospektivní studie MeSH
- průřezové studie MeSH
- retina patologie MeSH
- Check Tag
- dospělí MeSH
- lidé středního věku MeSH
- lidé MeSH
- mužské pohlaví MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- práce podpořená grantem MeSH
BACKGROUND AND PURPOSE: Recent studies suggested an increased incidence of cerebral venous thrombosis (CVT) during the coronavirus disease 2019 (COVID-19) pandemic. We evaluated the volume of CVT hospitalization and in-hospital mortality during the 1st year of the COVID-19 pandemic compared to the preceding year. METHODS: We conducted a cross-sectional retrospective study of 171 stroke centers from 49 countries. We recorded COVID-19 admission volumes, CVT hospitalization, and CVT in-hospital mortality from January 1, 2019, to May 31, 2021. CVT diagnoses were identified by International Classification of Disease-10 (ICD-10) codes or stroke databases. We additionally sought to compare the same metrics in the first 5 months of 2021 compared to the corresponding months in 2019 and 2020 (ClinicalTrials.gov Identifier: NCT04934020). RESULTS: There were 2,313 CVT admissions across the 1-year pre-pandemic (2019) and pandemic year (2020); no differences in CVT volume or CVT mortality were observed. During the first 5 months of 2021, there was an increase in CVT volumes compared to 2019 (27.5%; 95% confidence interval [CI], 24.2 to 32.0; P<0.0001) and 2020 (41.4%; 95% CI, 37.0 to 46.0; P<0.0001). A COVID-19 diagnosis was present in 7.6% (132/1,738) of CVT hospitalizations. CVT was present in 0.04% (103/292,080) of COVID-19 hospitalizations. During the first pandemic year, CVT mortality was higher in patients who were COVID positive compared to COVID negative patients (8/53 [15.0%] vs. 41/910 [4.5%], P=0.004). There was an increase in CVT mortality during the first 5 months of pandemic years 2020 and 2021 compared to the first 5 months of the pre-pandemic year 2019 (2019 vs. 2020: 2.26% vs. 4.74%, P=0.05; 2019 vs. 2021: 2.26% vs. 4.99%, P=0.03). In the first 5 months of 2021, there were 26 cases of vaccine-induced immune thrombotic thrombocytopenia (VITT), resulting in six deaths. CONCLUSIONS: During the 1st year of the COVID-19 pandemic, CVT hospitalization volume and CVT in-hospital mortality did not change compared to the prior year. COVID-19 diagnosis was associated with higher CVT in-hospital mortality. During the first 5 months of 2021, there was an increase in CVT hospitalization volume and increase in CVT-related mortality, partially attributable to VITT.
- Publikační typ
- časopisecké články MeSH
Nádory penisu patří mezi méně časté nádory urogenitální oblasti. Většinou se jedná o spinocelulární karcinomy. Tato kazuistika prezentuje případ pacienta s rychle progredujícím angiosarkomem, u kterého byla provedena totální amputace penisu.
Penile cancer is uncommon among other urological malignancies, squamous cell carcinoma being the most common type of penile cancer. This case report presents a patient with rapidly progressive angiosarcoma who underwent penile amputation.
- Klíčová slova
- amputace penisu,
- MeSH
- amputace MeSH
- cirkumcize u mužů MeSH
- fimóza komplikace MeSH
- histologické techniky MeSH
- lidé středního věku MeSH
- lidé MeSH
- nádory měkkých tkání * chirurgie patologie MeSH
- nádory penisu * chirurgie etiologie patologie MeSH
- penis chirurgie patologie MeSH
- sarkom chirurgie MeSH
- spinocelulární karcinom chirurgie patologie MeSH
- výsledek terapie MeSH
- Check Tag
- lidé středního věku MeSH
- lidé MeSH
- mužské pohlaví MeSH
- Publikační typ
- kazuistiky MeSH
BACKGROUND: Functional movement disorders, a common cause of neurological disabilities, can occur with heterogeneous motor manifestations including functional weakness. However, the underlying mechanisms related to brain function and connectivity are unknown. OBJECTIVE: To identify brain connectivity alterations related to functional weakness we assessed network centrality changes in a group of patients with heterogeneous motor manifestations using task-free functional MRI in combination with different network centrality approaches. METHODS: Task-free functional MRI was performed in 48 patients with heterogeneous motor manifestations including 28 patients showing functional weakness and 65 age- and sex-matched healthy controls. Functional connectivity differences were assessed using different network centrality approaches, i.e. global correlation, eigenvector centrality, and intrinsic connectivity. Motor symptom severity was assessed using The Simplified Functional Movement Disorders Rating Scale and correlated with network centrality. RESULTS: Comparing patients with and without functional weakness showed significant network centrality differences in the left temporoparietal junction and precuneus. Patients with functional weakness showed increased centrality in the same anatomical regions when comparing functional weakness with healthy controls. Moreover, in the same regions, patients with functional weakness showed a positive correlation between motor symptom severity and network centrality. This correlation was shown to be specific to functional weakness with an interaction analysis, confirming a significant difference between patients with and without functional weakness. CONCLUSIONS: We identified the temporoparietal junction and precuneus as key regions involved in brain connectivity alterations related to functional weakness. We propose that both regions may be promising targets for phenotype-specific non-invasive brain stimulation.
Rada neurodegeneratívnych ochorení je definovaná agregáciou a akumuláciou špecifického patologického proteínu v CNS, čo vedie k nezvratným a fatálnym zmenám tkaniva. Avšak kvôli vysokej klinickej a epidemiologickej heterogenite je definitívna ante-mortem diagnostika týchto ochorení obtiažna. Definitívne potvrdenie diagnózy poskytuje až neuropatologické vyšetrenie mozgového tkaniva. Nádej pre skorú a presnú laboratórnu diagnostiku týchto ochorení za života pacienta predstavujú metódy založené na detekcii konformáciu konvertujúcej aktivity patologických proteínov. Príkladom je nová, vysoko špecifická a senzitívna diagnostická metóda Real-Time Quaking-Induced Conversion (RT-QuIC). Pôvodne bola vyvinutá na diagnostiku priónových ochorení vykazujúc 92–97 % senzitivitu a 100 % špecificitu. V našom laboratóriu sme pomocou RT-QuIC detegovali prióny v 39 vzorkách mozgu, 24 korešpondujúcich vzorkách moku a v 38 vzorkách kože pacientov s Creutzfeldt-Jakobovou chorobou. Najnovšie bolo opísané využitie RT-QuIC metódy na detegovanie patologických proteínov a-synukleínu, ktorý sa hromadí pri Parkinsonovej chorobe alebo pri demencii s Lewyho telieskami a tau proteínu, charakteristického pre Alzheimerovu chorobu a kortikobazálnu degeneráciu. Predložený text sa zameriava na oboznámenie problematiky diagnostiky neurodegeneratívnych ochorení pomocou RT-QuIC metódy.
Many neurodegenerative diseases are defined by the aggregation and accumulation of the specific pathological protein in the CNS, leading to irreversible and fatal changes of the tissues. However, due to high clinical and epidemiological heterogeneity, a definitive ante-mortem diagnosis is very difficult to perform. The definitive diagnosis is confirmed by neuropathological evaluation made only at autopsy. Hope for early and accurate laboratory diagnostics of these diseases within a patient’s life represents methods based on the detection of seeding activity of pathological proteins. An example is a highly specific and ultrasensitive new method called Real-Time Quaking-Induced Conversion (RT-QuIC) assay. Originally, RT-QuIC was developed for the diagnosis of prions showing 92–97% sensitivity and 100% specificity. In our laboratory, we were able to detect prions in 39 brain samples, corresponding 24 cerebrospinal fluid samples, and in 38 skin samples of patients with Creutzfeldt-Jakob disease using RT-QuIC. Lately, the use of the RT-QuIC method for detection of pathological protein a-synuclein, which accumulates during Parkinson’s disease or dementia with Lewy bodies, and tau protein which is characteristic for Alzheimer’s disease or corticobasal degeneration, was described. This review aims to elucidate the diagnosis of neurodegenerative diseases and its recent approaches using RT-QuIC.
- Klíčová slova
- RT-QuIC,
- MeSH
- Alzheimerova nemoc diagnóza MeSH
- lidé MeSH
- neurodegenerativní nemoci * diagnóza MeSH
- Parkinsonova nemoc diagnóza MeSH
- prionová bílkovina analýza MeSH
- prionové nemoci diagnóza MeSH
- priony analýza MeSH
- Check Tag
- lidé MeSH
- Publikační typ
- práce podpořená grantem MeSH
- přehledy MeSH
