Publications by authors named "Stefan Lorenzl"

89 Publications

The Impact of COVID-19 on Palliative Care for People with Parkinson's and Response to Future Pandemics.

Expert Rev Neurother 2021 Apr 27. Epub 2021 Apr 27.

Parkinson and Movement Disorders Program and the Complex Neurologic Symptoms Clinic (Neuropalliative Care), University of Alberta, Alberta, Canada.

Introduction: Although in some countries, palliative care (PC) still remains poorly implemented, its importance throughout the course of Parkinson's disease (PD) is increasingly being acknowledged. With an emergence of Severe Acute Respiratory Syndrome Coronavirus-2 (SARS-CoV-2) pandemic, growing emphasis has been placed on the palliative needs of people with Parkinson's (PwP), particularly elderly, frail, and with comorbidities.

Areas Covered: The ongoing COVID-19 pandemic poses an enormous challenge on aspects of daily living in PwP and might interact negatively with a range of motor and non-motor symptoms (NMS), both directly and indirectly - as a consequence of pandemic-related social and health care restrictions. Here, the authors outline some of the motor and NMS relevant to PC, and propose a pragmatic and rapidly deployable, consensus-based PC approach for PwP during the ongoing COVID-19 pandemic, potentially relevant also for future pandemics.

Expert Opinion: The ongoing COVID-19 pandemic poses a considerable impact on PwP and their caregivers, ranging from mental health issues to worsening of physical symptoms - both in the short and long term ("Long-COVID"), and calls for specific personalized PC strategies relevant in a lockdown setting globally. Validated assessment tools should be applied remotely to flag up particular motor or NMS that require special attention, both in short- and long-term.
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http://dx.doi.org/10.1080/14737175.2021.1923480DOI Listing
April 2021

The Impact of COVID-19 on Palliative Care for People with Parkinson's and Response to Future Pandemics.

Expert Rev Neurother 2021 Apr 27. Epub 2021 Apr 27.

Parkinson and Movement Disorders Program and the Complex Neurologic Symptoms Clinic (Neuropalliative Care), University of Alberta, Alberta, Canada.

Introduction: Although in some countries, palliative care (PC) still remains poorly implemented, its importance throughout the course of Parkinson's disease (PD) is increasingly being acknowledged. With an emergence of Severe Acute Respiratory Syndrome Coronavirus-2 (SARS-CoV-2) pandemic, growing emphasis has been placed on the palliative needs of people with Parkinson's (PwP), particularly elderly, frail, and with comorbidities.

Areas Covered: The ongoing COVID-19 pandemic poses an enormous challenge on aspects of daily living in PwP and might interact negatively with a range of motor and non-motor symptoms (NMS), both directly and indirectly - as a consequence of pandemic-related social and health care restrictions. Here, the authors outline some of the motor and NMS relevant to PC, and propose a pragmatic and rapidly deployable, consensus-based PC approach for PwP during the ongoing COVID-19 pandemic, potentially relevant also for future pandemics.

Expert Opinion: The ongoing COVID-19 pandemic poses a considerable impact on PwP and their caregivers, ranging from mental health issues to worsening of physical symptoms - both in the short and long term ("Long-COVID"), and calls for specific personalized PC strategies relevant in a lockdown setting globally. Validated assessment tools should be applied remotely to flag up particular motor or NMS that require special attention, both in short- and long-term.
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http://dx.doi.org/10.1080/14737175.2021.1923480DOI Listing
April 2021

Resource Utilization of Patients with Parkinson's Disease in the Late Stages of the Disease in Germany: Data from the CLaSP Study.

Pharmacoeconomics 2021 May 19;39(5):601-615. Epub 2021 Mar 19.

Department of Geriatric Medicine, University of Duisburg-Essen, Germaniastrasse 1-3, 45356, Essen, Germany.

Objective: The Care of Late-Stage Parkinsonism (CLaSP) study aimed to collect qualitative and standardized patient data in six European countries (France, Germany, Netherlands, Portugal, UK, Sweden) to enable a detailed evaluation of the underexplored late stages of the disease (Hoehn and Yahr stage > 3) using clinical, neuropsychological, behavioral, and health economic data. The aim of this substudy was to provide a health economic evaluation for the German healthcare system.

Methods: In Germany, 228 patients were included in the study. Costs were calculated from a societal perspective for a 3-month period. Univariate analyses were performed to identify cost-driving predictors. Total and direct costs were analyzed using a generalized linear model with a γ-distributed dependent variable and log link function. Indirect costs were analyzed using a binomial generalized linear model with probit link function.

Results: The mean costs for the 3-month period were approximately €20,000. Informal care costs and hospitalization are approximately €11,000 and €5000. Direct costs amounted to 89% of the total costs, and the share of indirect costs was 11%. Independent predictors of total costs were the duration of the disease and age. The duration of the disease was the main independent predictor of direct costs, whereas age was an independent predictor of indirect costs.

Discussion: Costs in the late stage of the disease are considerably higher than those found in earlier stages. Compared to the latter, the mean number of days in hospital and the need for care is increasing. Informal caregivers provide most of the care.

Clinical Trial Registration: The protocol was registered at ClinicalTrials.gov as NCT02333175 on 7 January, 2015.
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http://dx.doi.org/10.1007/s40273-021-01011-yDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8079299PMC
May 2021

Caregiver Burden in Late-Stage Parkinsonism and Its Associations.

J Geriatr Psychiatry Neurol 2020 Oct 23:891988720968263. Epub 2020 Oct 23.

UCL Queen Square Institute of Neurology, 61554University College London, United Kingdom.

Background: Patients in the late stages of parkinsonism are highly dependent on others in their self-care and activities of daily living. However, few studies have assessed the physical, psychological and social consequences of caring for a person with late-stage parkinsonism.

Patients And Methods: Five hundred and six patients and their caregivers from the Care of Late Stage Parkinsonism (CLaSP) study were included. Patients' motor and non-motor symptoms were assessed using the UPDRS and Non-motor symptom scale (NMSS), Neuropsychiatric inventory (NPI-12), and caregivers' health status using the EQ-5D-3 L. Caregiver burden was assessed by the Zarit Burden Interview (ZBI).

Results: The majority of caregivers were the spouse or life partner (71.2%), and were living with the patient at home (67%). Approximately half of caregivers reported anxiety/depression and pain/discomfort (45% and 59% respectively). The factors most strongly associated with caregiver burden were patients' neuropsychiatric features on the total NPI score (r = 0.38, < 0.0001), total NMSS score (r = 0.28, < 0.0001), caring for male patients and patients living at home. Being the spouse, the hours per day assisting and supervising the patient as well as caregivers' EQ-5D mood and pain scores were also associated with higher ZBI scores (all < 0.001).

Conclusion: The care of patients with late stage parkinsonism is associated with significant caregiver burden, particularly when patients manifest many neuropsychiatric and non-motor features and when caring for a male patient at home.
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http://dx.doi.org/10.1177/0891988720968263DOI Listing
October 2020

Specialized Staff for the Care of People with Parkinson's Disease in Germany: An Overview.

J Clin Med 2020 Aug 10;9(8). Epub 2020 Aug 10.

Department of Nursing, University Hospital Frankfurt, Goethe University, 60590 Frankfurt, Germany.

Access to specialized care is essential for people with Parkinson´s disease (PD). Given the growing number of people with PD and the lack of general practitioners and neurologists, particularly in rural areas in Germany, specialized PD staff (PDS), such as PD nurse specialists and Parkinson Assistants (PASS), will play an increasingly important role in the care of people with PD over the coming years. PDS have several tasks, such as having a role as an educator or adviser for other health professionals or an advocate for people with PD to represent and justify their needs. PD nurse specialists have been established for a long time in the Netherlands, England, the USA, and Scandinavia. In contrast, in Germany, distinct PDS models and projects have been established. However, these projects and models show substantial heterogeneity in terms of access requirements, education, theoretical and practical skills, principal workplace (inpatient vs. outpatient), and reimbursement. This review provides an overview of the existing forms and regional models for PDS in Germany. PDS reimbursement concepts must be established that will foster an implementation throughout Germany. Additionally, development of professional roles in nursing and more specialized care in Germany is needed.
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http://dx.doi.org/10.3390/jcm9082581DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7463847PMC
August 2020

Characteristics of Patients with Late-Stage Parkinsonism Who are Nursing Home Residents Compared with those Living at Home.

J Am Med Dir Assoc 2021 Feb 25;22(2):440-445.e2. Epub 2020 Jul 25.

UCL Queen Square Institute of Neurology, University College London, London, UK. Electronic address:

Objectives: To determine clinical characteristics and treatment complications of patients with late-stage Parkinsonism living in nursing homes compared with those living at home.

Design: Cross-sectional analysis.

Setting And Participants: This study is an analysis of 692 patients with late stage Parkinsonism recruited to an in-depth international study, Care of Late-Stage Parkinsonism (CLaSP).

Measures: Sociodemographic characteristics were compared between patients who were living in a nursing home (n = 194) and those living at home (n = 498). Clinical assessments included the Unified Parkinson's Disease Rating Scale (UPDRS), the nonmotor symptom scale, the neuropsychiatric inventory, and a structured interview of patients and carers. Predictors of nursing home status were determined in a multivariate analysis.

Results: Nursing home placement was strongly associated with more severe cognitive impairment, worse UPDRS motor scores and disability, and with being unmarried and older. Although nursing home residents had significantly higher axial scores, falls were less common. Despite similar levodopa equivalence doses, they had less dyskinesia. Nonmotor symptom burden, particularly delusion, hallucination, and depression scores were higher in nursing home residents, and they were more frequently on psychotropic medication. They had lower rates of dopamine agonist use and lower rates of impulse control disorders. In multivariate analysis, being unmarried, presence of cognitive impairment, worse disease severity as assessed on the UPDRS parts II and III, severity of delusions, and lower rate of dyskinesia were associated with nursing home placement.

Conclusions And Implications: These clinical characteristics suggest that in patients with Parkinsonsim who are nursing home residents, presence of cognitive impairment and delusions particularly add to the higher overall symptom burden, and more often require specific treatments, including clozapine. Despite similar levodopa equivalent daily dose, motor severity is higher, and dyskinesias, indicative of a response to levodopa, are less common. Falls, however, also occur less commonly, and dopamine agonists are less frequently used, with lower rates of impulse control disorder.
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http://dx.doi.org/10.1016/j.jamda.2020.06.025DOI Listing
February 2021

Current collaboration between palliative care and neurology: a survey of clinicians in Europe.

BMJ Support Palliat Care 2020 Jul 10. Epub 2020 Jul 10.

Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, London, UK.

Introduction: The collaboration between palliative care and neurology has developed over the last 25 years and this study aimed to ascertain the collaboration between the specialties across Europe.

Methods: This online survey aimed to look at collaboration across Europe, using the links of the European Association for Palliative Care and the European Academy of Neurology.

Results: 298 people completed the survey-178 from palliative care and 120 from neurology from over 20 countries across Europe. They reported that there was good collaboration in the care for people with amyotrophic lateral sclerosis and cerebral tumours but less for other progressive neurological diseases. The collaboration included joint meetings and clinics and telephone contacts. All felt that the collaboration was helpful, particularly for maintaining quality of life, physical symptom management, psychological support and complex decision making, including ethical issues.

Discussion: The study shows evidence for collaboration between palliative care and neurology, but with the need to develop this for all neurological illness, and there is a need for increased education of both areas.
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http://dx.doi.org/10.1136/bmjspcare-2020-002322DOI Listing
July 2020

The Prevalence and Determinants of Neuropsychiatric Symptoms in Late-Stage Parkinsonism.

Mov Disord Clin Pract 2020 Jul 21;7(5):531-542. Epub 2020 May 21.

University College London, Queen Square Institute of Neurology, University College London London United Kingdom.

Background: Late-stage parkinsonism and Parkinson's disease (PD) are insufficiently studied population. Although neuropsychiatric symptoms (eg, psychosis, depression, anxiety, behavioral problems) are frequently present, their prevalence and clinical predictors remain unknown.

Objective: To determine the prevalence and predictors of neuropsychiatric symptoms in late-stage PD.

Methods: We conducted a multinational study of patients with PD with ≥7 years disease duration and either a Hoehn and Yahr stage ≥4 or a Schwab and England score ≤ 50% in the stage. Neuropsychiatric symptoms were assessed through interviews with carers using the Neuropsychiatric Inventory, with a frequency × severity score ≥ 4, indicating clinically relevant symptoms. The determinants analyzed were demographic characteristics, medication, and motor and nonmotor symptoms. Univariate and multivariate logistic analyses were performed on predictors of clinically relevant neuropsychiatric symptoms.

Results: A total of 625 patients were recruited in whom the Neuropsychiatric Inventory could be completed. In 92.2% (576/625) of the patients, at least 1 neuropsychiatric symptom was present, and 75.5% (472/625) had ≥1 clinically relevant symptom. The most common clinically relevant symptoms were apathy (n = 242; 38.9%), depression (n = 213; 34.5%), and anxiety (n = 148; 23.8%). The multivariate analysis revealed unique sets of predictors for each symptom, particularly the presence of other neuropsychiatric features, cognitive impairment, daytime sleepiness.

Conclusion: Neuropsychiatric symptoms are common in late-stage PD. The strongest predictors are the presence of other neuropsychiatric symptoms. Clinicians involved in the care for patients with late-stage PD should be aware of these symptoms in this specific disease group and proactively explore other psychiatric comorbidities once a neuropsychiatric symptom is recognized.
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http://dx.doi.org/10.1002/mdc3.12968DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7328429PMC
July 2020

[The role of inhibitors of COMT and MAO-B in the therapy of Parkinson's disease].

Fortschr Neurol Psychiatr 2020 Sep 25;88(9):620-633. Epub 2020 Jun 25.

Inhibitors of COMT and MAO-B are well established in the pharmacotherapy of Parkinson's disease (PD). MAO-B inhibitors are used as monotherapy as well as in combination with levodopa, whereas COMT inhibitors exert their effects only in conjungtion with levodopa. Both classes of compounds prolong the response duration of levodopa and optimise its clinical benefit. As a result, the ON-times are prolonged significantly. In the past, MAO-B inhibitors were also adminstered for neuroprotection; however, despite convincing scientific reasoning in support of neuroprotective effects, these could not be substantiated in clinical studies performed so far.
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http://dx.doi.org/10.1055/a-1149-9308DOI Listing
September 2020

Optimizing Treatment in Undertreated Late-Stage Parkinsonism: A Pragmatic Randomized Trial.

J Parkinsons Dis 2020 ;10(3):1171-1184

UCL Queen Square Institute of Neurology, University College London, Royal Free Campus, Rowland Hill Street, London, UK.

Background: Treatment of patients with late-stage parkinsonism is often sub-optimal.

Objective: To test the effectiveness of recommendations by a movement disorder specialist with expertise in late-stage parkinsonism.

Methods: Ninety-one patients with late-stage parkinsonism considered undertreated were included in apragmatic a pragmatic multi-center randomized-controlled trial with six-month follow-up. The intervention group received a letter with treatment recommendations to their primary clinician based on an extensive clinical assessment. Controls received care as usual. The primary outcome was the Unified Parkinson Disease Rating Scale (UPDRS)part-II (Activities of Daily Living). Other outcomes included quality-of-life (PDQ-8), mental health (UPDRS-I), motor function (UPDRS-III), treatment complications (UPDRS-IV), cognition (Mini-mental-state-examination), non-motor symptoms (Non-Motor-Symptoms-scale), health status (EQ-5D-5L) and levodopa-equivalent-daily-dose (LEDD). We also assessed adherence to recommendations. In addition to intention-to-treat analyses, a per-protocol analysis was conducted.

Results: Sample size calculation required 288 patients, but only 91 patients could be included. Treating physicians followed recommendations fully in 16 (28%) and partially in 21 (36%) patients. The intention-to-treat analysis showed no difference in primary outcome (between-group difference = -1.2, p = 0.45), but there was greater improvement for PDQ-8 in the intervention group (between-group difference = -3.7, p = 0.02). The per-protocol analysis confirmed these findings, and showed less deterioration in UPDRS-part I, greater improvement on UPDRS-total score and greater increase in LEDD in the intervention group.

Conclusions: The findings suggest that therapeutic gains may be reached even in this vulnerable group of patients with late-stage parkinsonism, but also emphasize that specialist recommendations need to be accompanied by better strategies to implement these to further improve outcomes.
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http://dx.doi.org/10.3233/JPD-202033DOI Listing
January 2020

Recommendations for Standards of Network Care for Patients with Parkinson's Disease in Germany.

J Clin Med 2020 May 13;9(5). Epub 2020 May 13.

Department of Neurology, Elblandklinikum Meißen, 01662 Meißen, Germany.

Although our understanding of Parkinson´s disease (PD) has improved and effective treatments are available, caring for people with PD remains a challenge. The large heterogeneity in terms of motor symptoms, nonmotor symptoms, and disease progression makes tailored individual therapy and individual timing of treatment necessary. On the other hand, only limited resources are available for a growing number of patients, and the high quality of treatment cannot be guaranteed across the board. At this point, networks can help to make better use of resources and improve care. The working group PD Networks and Integrated Care, part of the German Parkinson Society, is entrusted to convene clinicians, therapists, nurses, researchers, and patients to promote the development of PD networks. This article summarizes the work carried out by the working group PD Networks and Integrated Care in the development of standards of network care for patients with PD in Germany.
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http://dx.doi.org/10.3390/jcm9051455DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7290836PMC
May 2020

Spiritual care as an integrated approach to palliative care for patients with neurodegenerative diseases and their caregivers: a literature review.

Ann Palliat Med 2020 Jul 7;9(4):2303-2313. Epub 2020 Apr 7.

Palliative Care Research Hub at the Institute of Nursing Science and Practice, Paracelsus Medical University, Salzburg, Austria; Department of Neurology, Agatharied Hospital, Hausham, Germany.

A literature review of the PubMed and Web of Science was conducted to identify peerreviewed publications on this topic. Additional search was carried out using Google Scholar. This article reflects on the current state of art in spiritual care as an integrated palliative care approach for patients with neurodegenerative diseases and their caregivers. It proposes developing belief and value based care models for people with life-limiting conditions and their caregivers to prevent health related suffering.
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http://dx.doi.org/10.21037/apm.2020.03.37DOI Listing
July 2020

Binding of Metal-Ion-Induced Tau Oligomers to Lipid Surfaces Is Enhanced by GSK-3β-Mediated Phosphorylation.

ACS Chem Neurosci 2020 03 28;11(6):880-887. Epub 2020 Feb 28.

Department of Neurology, Klinikum der Universität München, Ludwig-Maximilians-University, 81377 Munich, Germany.

While fibrillar deposits of hyperphosphorylated protein tau are a key hallmark of several neurodegenerative diseases such as Alzheimer's disease, small oligomers have been speculated to be the key toxic aggregate species. Trivalent metal ions were shown to promote tau oligomer formation . However, little is known about potential intercellular spreading mechanisms or toxic modes of action of such oligomers. We investigated interactions of tau monomers and Fe/Al-induced oligomers with small unilamellar vesicles derived from 1-palmitoyl-2-oleoyl-phosphatidylcholine (neutral, liquid-crystalline phase) and dipalmitoyl-phosphatidylcholine (neutral, gel-phase). We further evaluated the influence of glycogen synthase kinase 3β (GSK-3β)-mediated tau phosphorylation applying the single-particle fluorescence spectroscopy techniques fluorescence correlation spectroscopy, fluorescence intensity distribution analysis, and scanning for intensely fluorescent targets. In these experiments, no binding to neutral lipid surfaces was observed for tau monomers. In contrast, metal-ion-induced tau oligomers showed a gain of function in binding to neutral lipid surfaces. Of note, tau phosphorylation by GSK-3β increased both oligomer formation and membrane affinity of the resulting oligomers. In conclusion, our data imply a pathological gain of function of metal-ion-induced oligomers of hyperphosphorylated tau, enabling membrane binding irrespective of surface charge even at nanomolar protein concentrations.
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http://dx.doi.org/10.1021/acschemneuro.9b00459DOI Listing
March 2020

Patients with Parkinson's disease need spiritual care.

Ann Palliat Med 2020 Mar 16;9(2):144-148. Epub 2019 Dec 16.

Palliative Care Research Hub, the Institute of Nursing Science and Practice, Paracelsus Medical University, Salzburg, Austria.

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http://dx.doi.org/10.21037/apm.2019.11.24DOI Listing
March 2020

Considerations in preparing a multicenter study: Lessons learned from the Epilepsy Monitoring Unit Comfort Questionnaire (EMUCQ) validation feasibility study.

Epilepsy Behav 2019 09 9;98(Pt A):53-58. Epub 2019 Jul 9.

Department of Neurology, Christian-Doppler Medical Centre, Paracelsus Medical University, Ignaz-Harrer-Straße 79, 5020 Salzburg, Austria; Centre for Cognitive Neuroscience, Ignaz-Harrer-Straße 79, 5020, Salzburg, Austria.

Purpose: It is recommended to perform a pilot testing before conducting a validation study of a novel questionnaire. Pilot studies may serve different purposes. The aim of this study was to assess the feasibility of a multicenter validation study, to recruit additional study centers, and to undertake orientating descriptive item analysis of the 44-item Epilepsy Monitoring Unit (EMU) Comfort Questionnaire (EMUCQ).

Methods: During a six-month sampling period, the EMUCQ was administered to eligible EMU patients. The patients filled out the questionnaire at two time points. Additional centers were recruited in Germany and Austria, and ethics votes obtained. In descriptive item analysis central tendency, variability, item distribution and item difficulty were calculated.

Results: A total of 44 EMU patients participated in the study. Eight additional EMUs agreed to join the planned validation study. Recruitment of the centers took four months. Another six months passed to obtain all the ethics votes. Floor and ceiling effects could be detected in 32 items. One item with the lowest median showed the low item difficulty. Another five items showed medians with the height of 6. In four items, high difficulty indices could be observed.

Conclusion: A good network has turned out to be very helpful while planning a multicenter study. Enough time must be scheduled, because obtaining an ethics vote may take quite a long time. No conclusive statements regarding item properties could be made as this was a feasibility study.
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http://dx.doi.org/10.1016/j.yebeh.2019.06.019DOI Listing
September 2019

No Evidence of a Contribution of the Vestibular System to Frequent Falls in Progressive Supranuclear Palsy.

J Clin Neurol 2019 Jul;15(3):339-346

Department of Neurology, Ludwig Maximilians University, Munich, Germany.

Background And Purpose: Conflicting results about vestibular function in progressive supranuclear palsy (PSP) prompted a systematic examination of the semicircular canal function, otolith function, and postural stability.

Methods: Sixteen patients with probable PSP [9 females, age=72±6 years (mean±SD), mean disease duration=3.6 years, and mean PSP Rating Scale score=31] and 17 age-matched controls were examined using the video head impulse test, caloric testing, ocular and cervical vestibular evoked myogenic potentials (o- and cVEMPs), video-oculography, and posturography.

Results: There was no evidence of impaired function of the angular vestibulo-ocular reflex (gain=1.0±0.1), and caloric testing also produced normal findings. In terms of otolith function, there was no significant difference between PSP patients and controls in the absolute peakto-peak amplitude of the oVEMP (13.5±7.2 μV and 12.5±5.6 μV, respectively; =0.8) or the corrected peak-to-peak amplitude of the cVEMP (0.6±0.3 μV and 0.5±0.2 μV, =0.3). The total root-mean-square body sway was significantly increased in patients with PSP compared to controls (eyes open/head straight/hard platform: 9.3±3.7 m/min and 6.9±2.1 m/min, respectively; =0.032). As expected, the saccade velocities were significantly lower in PSP patients than in controls: horizontal, 234±92°/sec and 442±66°/sec, respectively; downward, 109±105°/sec and 344±72°/sec; and upward, 121±110°/sec and 348±78°/sec (all <0.01).

Conclusions: We found no evidence of impairment of either high- or low-frequency semicircular function or otolith organ function in the examined PSP patients. It therefore appears that other causes such as degeneration of supratentorial pathways lead to postural imbalance and falls in patients with PSP.
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http://dx.doi.org/10.3988/jcn.2019.15.3.339DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6620443PMC
July 2019

[Amyotrophic Lateral Sclerosis - Challenges of Family Caregivers].

Fortschr Neurol Psychiatr 2019 Sep 1;87(9):476-482. Epub 2019 Jul 1.

Paracelsus Medizinische Privatuniversität Salzburg.

Background:  Patients who suffer from amyotrophic lateral sclerosis sometimes show pathological changes in behaviour and cognition. Some even develop frontotemporal dementia. The family caregivers of the patients are faced with additional challenges.

Aim:  To describe the effect of changes in behaviour and cognition on the emotional state and the perceived stress and burdens of family caregivers.

Method:  Different search terms were used for searching in several databases. Ten trials were included in the study. Further examinations of this topic on the basis of additional literature are described in the discussion section.

Results:  Changes in behaviour and cognition can lead to symptoms of anxiety and depression in family caregivers. The findings also show a correlation between apathy, disinhibition and executive dysfunction combined with an increase in caregiver burden.

Conclusion:  Changes in behaviour and cognition in patients with ALS have a negative impact on the emotional state of family caregivers and contribute to increased feelings of being burdened. Early and detailed information concerning possible disease-induced changes is necessary.
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http://dx.doi.org/10.1055/a-0934-6163DOI Listing
September 2019

Telemedicine in Palliative Care: Implementation of New Technologies to Overcome Structural Challenges in the Care of Neurological Patients.

Front Neurol 2019 24;10:510. Epub 2019 May 24.

Krankenhaus Agatharied GmbH, Hausham, Germany.

Telemedicine provides a possibility to deal with the scarcity of resources and money in the health care system. Palliative care has been suggested to be appropriate for an increasing number of patients with neurodegenerative disorders, but these patients often lack care from either palliative care or neurology. Since palliative care means a multidisciplinary approach it is meaningful to use palliative care structures as a basis. There exists no systematic access to neurological expertise in an outpatient setting. A successful link of two existing resources is shown in this project connecting the Department of Neurology of an University Hospital with specialized outpatient palliative care (SPC) teams. A videocounselling system is used to provide expert care for neurological outpatients in a palliative setting. A prospective explorative single arm pilot trial was implemented to provide a mobile telesystem for 5 SPC teams. The opportunity was given to consult an expert in neuropalliative care at the specialized center in the hospital (24/7). Semistructured interviews were conducted with the physicians of the SPC teams after a trial duration of 9 months. Our data provides strong evidence that the technical structure applied in this project allows a reasonable neurological examination at distance. Qualitative interviews indicate a major impact on the quality of work for the SPC teams and on the quality of care for neurological patients. The system proves to be useful and is well accepted by the SPC teams. It supplies a structure that can be transported to other disciplines.
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http://dx.doi.org/10.3389/fneur.2019.00510DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6542948PMC
May 2019

Management of delirium in Parkinson's disease.

J Neural Transm (Vienna) 2019 07 6;126(7):905-912. Epub 2019 Feb 6.

Department of Neurology, Charité-Universitätsmedizin Berlin, Hindenburgdamm 30, 12200, Berlin, Germany.

Delirium is an acute and fluctuating disturbance of attention and awareness. Pre-existing cognitive disturbances or dementia are the most significant risk factors for developing delirium and precipitating factors such as drug treatment, infections, trauma, or surgery may trigger delirium. Patients with Parkinson's disease (PD) are at an increased risk for delirium which may be underdiagnosed due to phenomenological overlap between delirium and chronic neuropsychiatric features of PD or side effects of dopaminergic medication. Prognosis of delirium is detrimental in many cases including permanent cognitive decline, motor impairment, and increased mortality. Management of delirium comprises of pharmacological and non-pharmacological measures. Pharmacotherapy is aimed at treating medical precipitating factors such as infections, pain, and sleep deprivation. Adjustments of anti-parkinsonian medication are recommended to prevent or treat delirium, but no hard evidence in this respect is available from controlled studies. Administration of neuroleptics and other psychoactive drugs in the treatment of delirium is controversially discussed and should be reserved for patients with severe agitation or distressing psychosis. Non-pharmacological interventions to prevent or palliate delirium are based on withdrawing precipitating or distressing factors, and to provide sensory, emotional and environmental support. Appropriate instruments to detect and assess delirium in PD are needed, and efforts are warranted to improve understanding and treatment of this severe and common disorder.
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http://dx.doi.org/10.1007/s00702-019-01980-7DOI Listing
July 2019

Postgraduate palliative care education for all healthcare providers in Europe: Results from an EAPC survey.

Palliat Support Care 2019 10;17(5):495-506

Palliative Medicine, RWTH Aachen University, Aachen, Germany.

Objective: Palliative care training at basic, intermediate, and specialist levels, recommended by the World Health Organization (WHO), is challenging to access in resource-poor countries and regions. Providing support in this regard would seem a moral imperative for all countries with established palliative care education systems and a strong resource base. In collaboration with WHO European Office and European Association for Palliative Care, this paper looks into the educational requirements in palliative care at postgraduate level within Europe.

Method: A survey was specifically designed to gather opinions and comments on elements of palliative care education from European experts. Participants were invited to assess the European Association for Palliative Care core competencies on a five-item scale and to define essential learning goals. Survey data were statistically analyzed using IBM SPSS Statistics Software. Qualitative data were thematically analyzed.

Result: A total of 195 data sets were recorded; 82 were completed fully. The statistical analysis revealed a high agreement regarding the key elements of palliative care education. The thematic analysis indicated that at postgraduate level all healthcare providers need to (1) comprehend the palliative care philosophy, (2) be able to demonstrate the complex symptom assessment and management competencies, (3) be able to design care plans based on patients and families wishes integrating multiprofessional and interdisciplinary approaches, and (4) be able to listen and self-reflect.

Significance Of Results: According to the WHO, inadequate skills and capacities of healthcare workers are one of the four barriers hindering the access to palliative care. This paper contains a new and comprehensive list of learning goals essential for multidisciplinary postgraduate palliative care education. Besides highlighting the relevant competencies, the article provides best-practice toolboxes with teaching and assessment methods. The article comments on the WHO's palliative care definition and underpins the importance of the role of the education in knowledge development and skills acquisition.
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http://dx.doi.org/10.1017/S1478951518000986DOI Listing
October 2019

A Pilgrim's Journey-When Parkinson's Disease Comes to an End in Nursing Homes.

Front Neurol 2018 11;9:1068. Epub 2018 Dec 11.

Institute for Nursing Science and Practice, Paracelsus Medical University, Salzburg, Austria.

Our interdisciplinary mixed-methods exploratory study was aimed at gaining empirical data on the medical and nursing demands of residents who are in a late stage of Parkinson Disease (PD) and are cared for in residential homes in Salzburg (Austria). In earlier studies it has been concluded that symptom burden of late stage PD patients is similar to or even higher compared with oncological patients. However, although all nine residents who took part in our study had severe limitations in performing their daily activities and experienced enormous restrictions in their mobility, they were quite content with their present living situations and did not show significant symptom burden. From the ethnographic family interviews that we conducted the following features emerged: a strong closeness in the family, an improved quality of life when the patients lived in the nursing home and fears about the future. Therefore, we concluded that living in a nursing home that provides for the needs of these patients is the best option for PD patients in the final stages of their disease as well as for their relatives.
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http://dx.doi.org/10.3389/fneur.2018.01068DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6297137PMC
December 2018

Study protocol: Care of Late-Stage Parkinsonism (CLaSP): a longitudinal cohort study.

BMC Neurol 2018 Nov 5;18(1):185. Epub 2018 Nov 5.

UCL Institute of Neurology, University College London, Royal Free Campus, Rowland Hill street, NW3 2PF, London, UK.

Background: Parkinson's disease (PD) is a chronic progressive disorder leading to increasing disability. While the symptoms and needs of patients in the early stages of their disease are well characterized, little information is available on patients in the late stage of the disease.

Methods/design: The Care of Late-Stage Parkinsonism (CLaSP) study is a longitudinal, multicenter, prospective cohort study to assess the needs and provision of care for patients with late stage Parkinsonism and their carers in six European countries (UK, France, Germany, Netherlands, Portugal, Sweden). In addition, it will compare the effectiveness of different health and social care systems. Patients with Parkinsonism with Hoehn and Yahr stage ≥IV in the "On"-state or Schwab and England stage 50% or less are evaluated at baseline and three follow-up time-points. Standardised questionnaires and tests are applied for detailed clinical, neuropsychological, behavioural and health-economic assessments. A qualitative study explores the health care needs and experiences of patients and carers, and an interventional sub-study evaluates the impact of specialist recommendations on their outcomes.

Discussion: Through the combined assessment of a range of quantitative measures and qualitative assessments of patients with late stage parkinsonism, this study will provide for the first time comprehensive and in-depth information on the clinical presentation, needs and health care provision in this population in Europe, and lay the foundation for improved outcomes in these patients.

Trial Registration: The protocol was registered at ClinicalTrials.gov as NCT02333175 on 07/01/2015.
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http://dx.doi.org/10.1186/s12883-018-1184-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6217790PMC
November 2018

[Dementia with Lewy bodies].

Fortschr Neurol Psychiatr 2018 09 21;86(S 01):S43-S47. Epub 2018 Sep 21.

Klinik für Neurologie, Klinikum rechts der Isar, Technische Universität München und Lehrstuhl für Translationale Neurodegeneration, Deutsches Zentrum für Neurodegenerative Erkrankungen e. V. (DZNE) München.

Dementia with Lewy bodies is characterized histopathologically by the deposition of α-synuclein in inclusion bodies. Clinical diagnosis is based on progressive cognitive deficits, cognitive fluctuations, early visual hallucinations, REM sleep disorders and symptoms of Parkinsonism. On the basis of the new criteria published in 2017, better differentiation from other neurodegenerative diseases with dementia should be possible. Therapy concepts include treatment of loss of motor and cognitive performance as well as psychological and behavioral symptoms. At present, only a few studies are available on this clinical picture so that evidence-based therapy approaches are only possible to a limited extent.
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http://dx.doi.org/10.1055/a-0696-6249DOI Listing
September 2018

[Neuropalliative care aspects in patients with Parkinson's disease].

Fortschr Neurol Psychiatr 2018 09 21;86(S 01):S30-S33. Epub 2018 Sep 21.

Institut für Pflegewissenschaften der PMU Salzburg.

Palliative Care in Parkinson's Disease (PD) is of growing interest. The burden of symptoms of late-stage PD patients is similar or even higher than those of patients suffering from oncological diseases. However, patients suffering from advanced phases of PD have tremendous unmet palliative care needs. The disease trajectories are often difficult to define, and initiation of palliative care approach has to be chosen carefully. Swallowing difficulties define the onset of the late and palliative phase and have to be seen as a landmark for palliative care involvement. Here we provide an approach to palliative care in PD in the final phase and also care for the relatives.
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http://dx.doi.org/10.1055/a-0671-2115DOI Listing
September 2018

Severity dependent distribution of impairments in PSP and CBS: Interactive visualizations.

Parkinsonism Relat Disord 2019 03 4;60:138-145. Epub 2018 Sep 4.

Memory and Aging Center, Department of Neurology, University of California, 675 Nelson Rising Lane, Suite 193, San Francisco, CA, 94158, USA.

Background: Progressive supranuclear palsy (PSP) -Richardson's Syndrome and Corticobasal Syndrome (CBS) are the two classic clinical syndromes associated with underlying four repeat (4R) tau pathology. The PSP Rating Scale is a commonly used assessment in PSP clinical trials; there is an increasing interest in designing combined 4R tauopathy clinical trials involving both CBS and PSP.

Objectives: To determine contributions of each domain of the PSP Rating Scale to overall severity and characterize the probable sequence of clinical progression of PSP as compared to CBS.

Methods: Multicenter clinical trial and natural history study data were analyzed from 545 patients with PSP and 49 with CBS. Proportional odds models were applied to model normalized cross-sectional PSP Rating Scale, estimating the probability that a patient would experience impairment in each domain using the PSP Rating Scale total score as the index of overall disease severity.

Results: The earliest symptom domain to demonstrate impairment in PSP patients was most likely to be Ocular Motor, followed jointly by Gait/Midline and Daily Activities, then Limb Motor and Mentation, and finally Bulbar. For CBS, Limb Motor manifested first and ocular showed less probability of impairment throughout the disease spectrum. An online tool to visualize predicted disease progression was developed to predict relative disability on each subscale per overall disease severity.

Conclusion: The PSP Rating Scale captures disease severity in both PSP and CBS. Modelling how domains change in relation to one other at varying disease severities may facilitate detection of therapeutic effects in future clinical trials.
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http://dx.doi.org/10.1016/j.parkreldis.2018.08.025DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6399076PMC
March 2019

Access to End-of Life Parkinson's Disease Patients Through Patient-Centered Integrated Healthcare.

Front Neurol 2018 30;9:627. Epub 2018 Jul 30.

Endowed Professorship for Interdisciplinary Research in Palliative Care, Institute of Nursing Science and Practice, Paracelsus Medical University, Salzburg, Austria.

Palliative care in Parkinson's Disease (PD) patients considerably differs from palliative care in oncology patients. Integrated care models are a concept to support patients and improve management of PD symptoms. However, it is not known if the access to PD patients at the end of life can be achieved through integrated care models. To analyze an integrated model of care for PD patients with the aim to identify if this integrated model of care has access to PD patients at the end of life. The Cologne Parkinson's network was designed as a randomized, controlled prospective clinical trial in order to increase quality of life of PD patients. This innovative model of care integrated a neurologist in private practice, a movement disorder specialist of the University Hospital and a PD nurse. Mortality rates of PD patients during the study period of 6 months were registered and compared with mortality rates of the general population of Germany according to the Federal Statistical Office of Germany. The retrospective analysis was conducted after completion of the initial study at the University Hospital and neurologists' practices in the greater area of Cologne, Germany. Eligible patients had a diagnosis of idiopathic PD and were aged 25-85 years. Parkinson's Disease patients in this trial had an even slightly lower mortality rate as the general population (1.66 v. 2.1%). These results are contradictory and speak for a substantial proportion of late-stage disease patients, who have not been adequately included in this study or have been better treated within this trial. The mean disease duration of patients in this study was around 6 years which resembles the lower range of the mean disease duration at death of PD patients in general. The results of our analysis show, that accessing PD patients in the last phase of their disease is extremely difficult and nearly fails in spite of an integrated care approach. Reasons for poor access and loss of follow-up at the end of life have to be identified and care models for PD patients until the end of life should be developed urgently.
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http://dx.doi.org/10.3389/fneur.2018.00627DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6077876PMC
July 2018

Assessing comfort in the epilepsy monitoring unit: Development of an instrument.

Epilepsy Behav 2019 02 21;91:53-58. Epub 2018 May 21.

Department of Neurology, Christian Doppler Medical Centre, Paracelsus Medical University, Ignaz-Harrer-Straße 79, 5020 Salzburg, Austria; Centre for Cognitive Neuroscience, Ignaz-Harrer-Straße 79, 5020 Salzburg, Austria.

Background/purpose: Some patients perceive the experience of hospitalization in an epilepsy monitoring unit (EMU) to be an uncomfortable one. In order to provide comfort-enhancing measures, nurses need to assess comfort levels. For this purpose, Kolcaba developed the General Comfort Questionnaire (GCQ), which may be modified for usage in specific settings. The objective of this study was to develop an instrument to assess comfort of adult patients during hospitalization in an EMU, namely the Epilepsy Monitoring Unit Comfort Questionnaire (EMUCQ).

Methods: The GCQ was translated from American English into German following the guidelines of the International Society for Pharmacoeconomics and Outcome Research (ISPOR). Three native German speakers with good command of the English language did forward translations. An expert who grew up bilingual did a backtranslation. For use in an EMU, literature-based setting-specific items were added. In a qualitative-descriptive study, cognitive debriefing with 25 patients was conducted using cognitive interviews. Qualitative data analysis was based on the framework method. In a quantitative-descriptive study, nine clinical experts assessed content validity.

Results: For setting-specific modification, 12 items pertaining to surroundings, feeling observed, and feeling afraid of a seizure were added to the translated GCQ. Based on the initial content validity rating, 26 items remained unchanged, 12 items underwent revisions, and 14 items were omitted. Eight items were put aside for a follow-up rating in the context of cognitive debriefing. Cognitive interviewing revealed problems regarding the interpretation of items and missing items. According to the results, 27 items remained unchanged, 11 items were reworded, and six items were added. The final content validity rating showed item-content validity indices (I-CVI) between .33 and 1, and an average CVI on a scale level (S-CVI/ave) of .84.

Conclusions: Enhancing comfort is a fundamental nursing goal in demanding situations. Therefore, the contribution of nurses to the quality of individualized patient care is a substantial one. The EMUCQ is a valuable tool to support the assessment of comfort levels. The ISPOR guidelines proved to be useful to ensure high quality of the translated instrument. Using cognitive interviews enhanced the understandability of items and supported modification of the GCQ. At present, S-CVI/ave value of the EMUCQ is acceptable. Further testing is necessary.
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http://dx.doi.org/10.1016/j.yebeh.2018.05.004DOI Listing
February 2019

Qualitative postural control differences in Idiopathic Parkinson's Disease vs. Progressive Supranuclear Palsy with dynamic-on-static platform tilt.

Clin Neurophysiol 2018 06 19;129(6):1137-1147. Epub 2018 Mar 19.

Klinik für Neurologie und Neurophysiologie, Universitätsklinikum Freiburg, Breisacher Str. 64, 79106 Freiburg im Breisgau, Germany.

Objectives: We aimed to assess whether postural abnormalities in Progressive Supranuclear Palsy (PSP) and Idiopathic Parkinson's Disease (IPD) are qualitatively different by analysing spontaneous and reactive postural control.

Methods: We assessed postural control upon platform tilts in 17 PSP, 11 IPD patients and 18 healthy control subjects using a systems analysis approach.

Results: Spontaneous sway abnormalities in PSP resembled those of IPD patients. Spontaneous sway was smaller, slower and contained lower frequencies in both PSP and IPD as compared to healthy subjects. The amount of angular body excursions as a function of platform angular excursions (GAIN) in PSP was qualitatively different from both IPD and healthy subjects (GAIN cut-off value: 2.9, sensitivity of 94%, specificity of 72%). This effect was pronounced at the upper body level and at low as well as high frequencies. In contrast, IPD patients' stimulus-related body excursions were smaller compared to healthy subjects. Using a systems analysis approach, we were able to allocate these different postural strategies to differences in the use of sensory information as well as to different error correction efforts.

Conclusions: While both PSP and IPD patients show abnormal postural control, the underlying pathology seems to be different.

Significance: The identification of disease-specific postural abnormalities shown here may be helpful for diagnostic as well as therapeutic discriminations of PSP vs. IPD.
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http://dx.doi.org/10.1016/j.clinph.2018.03.002DOI Listing
June 2018

Using tube feeding and levodopa-carbidopa intestinal gel application in advanced Parkinson's disease.

Br J Nurs 2018 Mar;27(5):259-262

Professor for Interdisciplinary Research in Palliative Care, Institute for Nursing Science and Research, Medical University, Salzburg, Austria.

The inability to achieve adequate nutrition and weight loss are serious problems for patients with advanced Parkinson's disease (PD). To ensure the optimal intake of nutrition and fluids and to administer levodopa-carbidopa intestinal gel (LCIG) (which patients need to increase or maintain their mobility as long as possible), different artificial feeding tubes can be used. Although percutaneous endoscopic gastrostomy (PEG) tubes are frequently used in medical practice, there is little research that addresses key questions, including if and when to administer artificial fluids, nutrition and/or LCIG via tubes. Weight gain through tube feeding is only possible for some patients; nurses should keep in mind that tube insertion and feeding may lead to frequent adverse events. Administering LCIG via tubes is usually advisable as it seems to enhance patients' mobility and therefore has positive outcomes in terms of the quality of life of patients and their families ( Lim et al, 2015 ). The authors aimed to examine the use and consequences of providing nutrition and LCIG via gastrostomy tubes in PD patients with advanced disease.
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http://dx.doi.org/10.12968/bjon.2018.27.5.259DOI Listing
March 2018