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

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.Methods: 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.Results: 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.Conclusion: 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

Elevated Levels of Methylmalonate and Homocysteine in Parkinson's Disease, Progressive Supranuclear Palsy and Amyotrophic Lateral Sclerosis

Background/Aims: Increasing evidence suggests that elevated levels of homocysteine (Hcy) and methylmalonate (MMA) may be involved in the pathogenesis of neurodegenerative diseases. Methods: The urine levels of MMA and serum levels of Hcy as well as folic acid and vitamin B 12 were measured in patients suffering from the distinct neurodegenerative diseases progressive supranuclear palsy (PSP), amyotrophic lateral sclerosis (ALS) and Parkinson's disease (PD), and compared to age-and gender-matched control subjects. Results: We found significantly elevated concentrations of Hcy (PD 15.1, PSP 15.8, ALS 13.9, control 11.2 mu mol/l) and MMA (PD 3.7, PSP 3.1, ALS 3.7, control 1.8 mg/g) in all patient groups in comparison with controls. Levels of Hcy and MMA did not differ significantly between the neurodegenerative diseases. Conclusion: Our findings might imply that Hcy and MMA are released as a consequence of neurodegeneration regardless of the underlying cause and serve as surrogate markers of neurodegeneration. Alternatively they might be directly implicated in the pathogenesis of these diseases. Since elevated levels of both Hcy and MMA are neurotoxic, further studies might investigate the effect of vitamin therapy on disease progression. Copyright (C) 2010 S. Karger AG, Base

High Burden and Depression Among Late-Stage Idiopathic Parkinson Disease and Progressive Supranuclear Palsy Caregivers

Objectives: Caregivers of patients with late-stage idiopathic Parkinson disease (IPD) and late-stage progressive supranuclear palsy (PSP) often suffer from severe psychological strain themselves. This study investigates the influence of the different kind of symptoms in IPD and PSP on the psychological burden of the caregivers. Methods: Twenty patients with late-stage IPD and 20 patients with late-stage PSP and their caregivers were investigated. To measure the degree of motor, cognitive, and affective impairment of the patients, the instruments Subscale III of the Unified Rating Scale for Parkinsonism(UPDRS-III), a shortened 24-item version of the Mini-Mental State Examination, and the Geriatric Depression Scale (GDS-30) were used. Psychological burden of the caregivers was determined by using the Beck Depression Inventory (BDI-II) and the Zarit Caregiver Burden Inventory (ZBI). Results: Patients with IPD suffered from a higher level of depression (GDS-30: 15.9 vs 10.2, P=.020), whereas patients with PSP showed greater motor impairment (UPDRS-III: 38.3 vs 29.9, P=.002). Caregivers of both groups reported high psychological burden (ZBI: 36.5 in IPD vs 42.8 in PSP) and symptoms of a depression (BDI-II: 12.5 in IPD vs 15.1 in PSP). No significant influence of motor impairment, cognitive dysfunction, and depressive symptoms of the patient on the burden of the caregiver could be found. Conclusions: Psychological strain and depression among caregivers seem to become even more relevant in the late stages of IPD and PSP. Further studies will be necessary to investigate the specific determining factors in late-stage parkinsonian syndromes

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

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

Managing Advanced Progressive Supranuclear Palsy and Corticobasal Degeneration in a Palliative Care Unit: Admission Triggers and Outcomes

Background: Progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD) are characterized by rapid deterioration and a fatal outcome. Objectives: Admission triggers, treatment efficacy, and care patterns. Methods: Retrospective analysis of patients with PSP/CBD admitted to an inpatient specialized palliative care service. Results: In 38 patients, there were 63 admissions for swallowing difficulties, falls, pain, impaired communication, cognitive/mood disturbances, respiratory symptoms, and infection. Mean length of stay was 11.6 days. Treatment response was variable. In 68%, of admission episodes there was stabilization or improvement, 75% were discharged home. In case of readmission, the mean interval has been 9.7 months. Time since diagnosis and admission triggers were not associated with outcome or death. Conclusion: Patients showed high symptom load contrasting with discharge rates and subsequent health care utilization. Brief multidisciplinary interventions might be helpful to preserve autonomy

Needs Assessment of Safe Medicines Management for Older People With Cognitive Disorders in Home Care: An Integrative Systematic Review

Background and Objectives: The global trend of healthcare is to improve the quality and safety of care for older people with cognitive disorders in their own home. There is a need to identify how medicines management for these older people who are cared by their family caregivers can be safeguarded. This integrative systematic review aimed to perform the needs assessment of medicines management for older people with cognitive disorders who receive care from their family caregivers in their own home.Methods: An integrative systematic review of the international literature was conducted to retrieve all original qualitative and quantitative studies that involved the family caregivers of older people with cognitive disorders in medicines management in their own home. MeSH terms and relevant keywords were used to search four online databases of PubMed (including Medline), Scopus, CINAHL, and Web of Science and to retrieve studies published up to March 2021. Data were extracted by two independent researchers, and the review process was informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). Given that selected studies were heterogeneous in terms of the methodological structure and research outcomes, a meta-analysis could not be performed. Therefore, narrative data analysis and knowledge synthesis were performed to report the review results.Results: The search process led to retrieving 1,241 studies, of which 12 studies were selected for data analysis and knowledge synthesis. They involved 3,890 older people with cognitive disorders and 3,465 family caregivers. Their methodologies varied and included cohort, randomised controlled trial, cross-sectional studies, grounded theory, qualitative framework analysis, and thematic analysis. The pillars that supported safe medicines management with the participation of family caregivers in home care consisted of the interconnection between older people's needs, family caregivers' role, and collaboration of multidisciplinary healthcare professionals.Conclusion: Medicines management for older people with cognitive disorders is complex and multidimensional. This systematic review provides a comprehensive image of the interconnection between factors influencing the safety of medicines management in home care. Considering that home-based medicines management is accompanied with stress and burden in family caregivers, multidisciplinary collaboration between healthcare professionals is essential along with the empowerment of family caregivers through education and support

Assisted Suicide in Parkinsonian Disorders

Background: Due to the high prevalence of suicidal ideation in Parkinson's Disease (PD) and exploratory data indicating a similar prevalence in atypical Parkinsonian disorders (APD), we sought to determine the frequency of assisted suicide (AS) as well as factors driving these decisions in PD and APD. Methods: Retrospective chart analysis (2006-2012) at a Swiss Right-to-Die organization. Patients with PD and APD who completed AS were analyzed concerning disease state, symptom burden, medication, and social factors. Results: We identified 72 patients (PD = 34, PSP = 17, MSA = 17, CBS = 4; 7.2% of all AS cases), originating mainly from Germany (41.7%), Great Britain (29.2%), and the US (8.3%). Predominant symptoms at the time of application were immobility (PD/APD: 91%/97%), helplessness (63%/70%), pain (69%/19%), dysarthria (25%/32%), and dysphagia (19%/59%). APD patients generally showed a higher symptom burden and a higher frequency of diagnosed depression (8.8%/28.9%). While most patients with diagnosed depression received antidepressants (80%), other symptoms such as pain (59%) were treated less consistently. Of note, time from diagnosis to application differed greatly between PD (8.5 ± 6.8 years) and APD (1.5 ± 1.3 years, p < 0.0001). Conclusions: In our analysis, Parkinsonian disorders appeared to be overrepresented as a cause of AS considering the prevalence of these diseases. The observation that assisted suicide is sought early after initial diagnosis in APD implies the need for early comprehensive psychological support of these patients and their relatives

PRN Medicines Management for Older People with Long-Term Mental Health Disorders in Home Care

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Postgraduate palliative care education and curricular issues in Central Asia, Eastern and South-Eastern Europe: Results from a quantitative study

Introduction. The WHO Europe Office, together with the European Association for Palliative Care, issupporting the development of an interdisciplinary core curriculum for health care professionals in theEuropean Region, which is to be given to the countries as a recommendation.Material and methods. Between April and September 2018, a research journey to Central Asia, Easternand South-Eastern Europe took place. It covered two main tasks: collecting quantitative data using a surveyand collecting qualitative data by conducting on-site interviews. This article contains the quantitativepart. Experts in palliative care education in 23 countries were invited to fill out a questionnaire. The datareceived from 23 questions were statistically evaluated by IBM SPSS Statistics 25.Results. 27 surveys received from 21 countries were evaluated. In one-third of the surveyed countries, thereis still no postgraduate training in palliative care. The main barriers to the development of educational workare limited political interest, followed by limited educational structures, missing curricula, lack of trainersand the limited healthcare system. For 92.6% of all respondents, a WHO-recommended interdisciplinarypostgraduate core curriculum would help promote palliative care in their country.Conclusion. There is a high need for postgraduate education in general and the intended core curriculumin particular. The results of the survey, along with those from the interviews in a later second part of thepublication, are essential for the development of a core curriculum

Acupuncture for Symptom Relief in Palliative Care-Study Protocol and Semistandardized Treatment Schemes

The use of complementary and alternative medicine methods such as acupuncture in palliative care has increased over the past years. Well-planned trials are warranted to show its effectiveness in relieving distressing symptoms. The development of treatment schemes to be used in the trial for both acupuncture and medical symptom control is challenging, as both acupuncture and palliative care are highly individualized. Thus, standardized care plans of a randomized controlled trial will have difficulties in producing treatment results that compare to the clinical practice. As an alternative, treatment protocols for both acupuncture and medical symptom control of dyspnea, pruritus, hypersalivation, depression, anxiety, and xerostomia were designed with the input of experts. They are designed to provide sufficient symptom control and comparability for a three-arm, randomized controlled trial. Medical symptom control will be provided to all groups. The two control groups will be medical treatment and sham-laser acupuncture