Factors Associated with Preferred Place of Care and Death in Patients with Parkinson's Disease: A Cross-Sectional Study.

Background: A significant proportion of people with Parkinson's disease (PwPD) die in hospital settings. Although one could presume that most PwPD would favor being cared for and die at home, there is currently no evidence to support this assumption. Objective: We aimed at exploring PwPD's preferences for place of end-of-life care and place of death, along with associated factors. Methods: A cross-sectional study was conducted to investigate PwPD's end-of life wishes regarding their preferred place of care and preferred place of death. Using different approaches within a generalized linear model framework, we additionally explored factors possibly associated with preferences for home care and home death. Results: Although most PwPD wished to be cared for and die at home, about one-third reported feeling indifferent about their place of death. Preferred home care was associated with the preference for home death. Furthermore, a preference for dying at home was more likely among PwPD's with informal care support and spiritual/religious affiliation, but less likely if they preferred institutional care towards the end of life. Conclusions: The variation in responses regarding the preferred place of care and place of death highlights the need to distinguish between the concepts when discussing end-of-life care. However, it is worth noting that the majority of PwPD preferred care and death at home. The factors identified in relation to preferred place of care and death provide an initial understanding of PwPD decision-making, but call for further research to confirm our findings, explore causality and identify additional influencing factors.

A systematic practice review: Providing palliative care for people with Parkinson's disease and their caregivers.

BACKGROUND: People with Parkinson's disease has significant and increasing physical, psychosocial and spiritual needs, as well as problems with coordination and continuity of care. Despite the benefits that palliative care could offer, there is no consensus on how it should be delivered. AIM: The aim of this study is to provide a pragmatic overview of the evidence to make clinical recommendations to improve palliative care for people with Parkinson's disease and their caregivers. DESIGN: A systematic review method was adopted to determine the strength of evidence, supported by feedback from an expert panel, to generate the 'do', 'do not do' and 'do not know' recommendations for palliative care. DATA SOURCES: Searches were conducted via OVID to access CINAHL, MEDLINE, EMBASE and the Cochrane Library from 01/01/2006 to 31/05/2021. An additional search was conducted in December 2022. The search was limited to articles that included empirical studies of approaches to enabling palliative care. RESULTS: A total of 62 studies met inclusion criteria. There is evidence that education about palliative care and movement disorders is essential. palliative care should be multi-disciplinary, individualised and coordinated. Proactive involvement and support of caregivers throughout the illness is recommended. Limited data provide referral indicators for palliative care integration. Discussions about advance care planning should be held early. CONCLUSIONS: Consideration of palliative care integration based on symptom burden and personal preferences, coordination and continuity of care are needed to maintain the quality of life of people with Parkinson's disease and their caregivers.

Vignettes as a novel research tool in spiritual care: A methods paper.

AIMS: To discuss the construction and use of vignettes as a novel approach in spiritual care research and education. DESIGN: Methods paper. METHODS: In this methods paper, the authors introduce the use of vignettes in spiritual care research and provide insight into the construction of vignettes. The vignette presented was part of a study of neurosurgical nurses' attitudes and responses to the spiritual needs of neuro-oncology patients. The development process, consisting of four steps, is explained in this paper. RESULTS: Using a vignette to explore nurses' attitudes towards spiritual care is an innovative way to understand what behaviours nurses consider appropriate in situations where the patient is seeking meaning and connection. Transparent description of the development process is crucial to ensure reproducibility. CONCLUSION: The use of theoretically constructed and validated vignettes in spiritual care research is new. Vignettes used in surveys have the potential to elicit nurses' responses to patients' search for meaning and connectedness. IMPLICATIONS: In order to investigate nurses' attitudes and behaviours towards patients' spiritual needs, carefully constructed and validated vignettes are valuable research tools. IMPACT: Vignettes have proven to be a valuable research tool in the social and health sciences. So far, their use as a survey instrument in spiritual care research has not been investigated. Therefore, this method paper introduces vignettes as a novel approach to spiritual care research. Our findings contribute to the further development of vignettes in nursing science, as there are similarities with case development and simulation training in nursing education. REPORTING METHOD: Reporting guideline is not applicable. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Neurological consultations via telemedicine for specialized outpatient palliative care (SOPC) at home and in hospice (TANNE project): study protocol for a randomized controlled trial.

BACKGROUND: Neurological diseases cause numerous challenges in palliative care. Telemedicine may improve the access to specialized expertise in neurology for patients, their relatives, and palliative care physicians. The TANNE study offers teleconsultations by a hospital-based neuropalliative center for specialized outpatient palliative care (SOPC) and hospices. A prospective, partially randomized, controlled trial aims at generating evidence for clinical improvements, quality of life, and cost efficiency. METHODS: SOPC and hospice teams in Bavaria, Germany, are partially randomized to one of two study arms, namely a treatment group with teleconsultations by specialists for neurology and palliative medicine or to a control group with interventions after a 12-months delay. Individual and population-based measures are assessed with a mixed-methods design in order to evaluate the medical effects, the potential for implementation in standard care, and health economic aspects. The primary outcome consists of the mean change difference between groups in the Integrated Palliative Care Outcome Scale (IPOS), which physicians assess before and after treatment of a neurological event. Besides, several secondary outcomes are investigated, including quality of life, which is measured with the revised McGill Quality of Life Questionnaire (McGill QOL-R) as well as items regarding general and health-related quality of life. Further secondary outcomes include the concrete progress of the neurological signs and symptoms; the subjective change in well-being since the start of the treatment of the neurological diseases from the perspectives of patients, their relatives, as well as medical and nursing professionals; as well as patient, professional, and caregiver satisfaction with the teleconsultations. Moreover, a health economic evaluation compares group differences regarding hospital visits and emergency calls with utilization measurements. DISCUSSION: The TANNE trial provides a comprehensive and complex evaluation design for teleconsultations in neuropalliative care. Ethical considerations need to take the patients' vulnerability into account. The project promises to substantially broaden the width of health care services and to improve the quality of life for deserving patients. TRIAL REGISTRATION: German Clinical Trials Register ( www.germanctr.de [July 17, 2022], DRKS ID: DRKS00027436. Registered February 10th, 2022, retrospectively registered. https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00027436 [July 17, 2022].

Practical Considerations of PRN Medicines Management: An Integrative Systematic Review.

Background and objectives: Highly widespread use of pro re nata (PRN) medicines in various healthcare settings is a potential area for improper medication prescription and administration leading to patient harm. This study aimed to summarize and integrate the findings of all relevant individual studies regarding the practical considerations of PRN medicines management including strategies and interventions by healthcare professionals for safe prescription, dispensing, administration, monitoring, and deprescription of PRN medicines in healthcare settings. Methods: An integrative systematic review on international databases were performed. Electronic databases including Web of Knowledge, Scopus, PubMed (including MEDLINE), and Cinahl were searched to retrieve articles published until end of May 2021. Original qualitative, quantitative, and mixed methods studies written in English were included with a focus on PRN medicines management in healthcare settings. Research synthesis using the narrative method was performed to summarise the results of included studies. Results: Thirty-one studies on PRN medicines in healthcare settings by different healthcare providers were included after the screening of the databases based on eligibility criteria. They were published from 1987 to 2021. The majority of studies were from Australia, the United States, Canada, and the United Kingdom and were conducted in psychiatric settings. Given variations in their purposes, methods, and outcomes, the research synthesis was conducted narratively based on diversities and similarities in findings. Eight categories were developed by the authors as follows: "PRN indications and precautionary measures," "requirements of PRN prescription," "interventions for PRN administration," "monitoring and follow up interventions," "deprescription strategies," "healthcare professionals' role," "participation of patients and families," and "multidisciplinary collaboration." Each category consists of several items and describes what factors should be considered by healthcare professionals for PRN medicines management. Conclusion: The review findings provide insights on the practical considerations of PRN medicines management in clinical practice. The suggested list of considerations in our review can be used by healthcare professionals for optimal PRN medicines management and safeguarding patient care.

A Phase I Trial to Determine the Pharmacokinetics, Psychotropic Effects, and Safety Profile of a Novel Nanoparticle-Based Cannabinoid Spray for Oromucosal Delivery.

INTRODUCTION: A phase I, open-label clinical trial in healthy male subjects was conducted to assess the pharmacokinetic and safety profile of an oromucosal cannabinoid spray (AP701) containing a lipid-based nanoparticular drug formulation standardized to ∆-9-tetrahydrocannabinol (THC). METHODS: Twelve healthy male subjects received a single dose of AP701 (12 sprays) containing 3.96 mg THC. Plasma samples were drawn 10 min-30 h post dose for analysis of THC and the active metabolite 11-hydroxy-∆-9-THC (11-OH-THC). RESULTS: The single dose of the applied oromucosal cannabinoid spray AP701 (12 sprays, 3.96 mg THC) resulted in a mean maximum plasma concentration (Cmax) of 2.23 ng/mL (90% CI 1.22-3.24) and a mean overall exposure (area under the concentration-time curve from time 0 to last measurable concentration [AUC0-t]) of 7.74 h × ng/mL (90% CI 5.03-10.45) for THC. For the active metabolite 11-OH-THC, a Cmax of 2.09 mg/mL (90% CI 1.50-2.68) and AUC0-t of 10.4 h × ng/mL (90% CI 7.03-13.77) was found. The oromucosal cannabinoid spray AP701 caused only minor psychotropic effects despite the relatively high dosage applied by healthy subjects. No serious adverse effects occurred. Overall, the oromucosal cannabinoid spray AP701 was well tolerated. CONCLUSION: Compared to currently available drugs on the market, higher AUC values could be detected for the oromucosal cannabinoid spray AP701 despite administration of a lower dose. These comparatively higher blood levels caused only minor psychotropic adverse effects. The oromucosal cannabinoid spray AP701 was well tolerated at a single dose of 3.96 mg THC. The oromucosal administration may provide an easily applicable and titratable drug formulation with a high safety and tolerability profile.

Palliative Care Challenges of Patients With Progressive Bulbar Palsy: A Retrospective Case Series of 14 Patients.

Progressive bulbar palsy (PBP) is a form of motoneuron disease and is widely classified as a subtype of amyotrophic lateral sclerosis (ALS) with a shorter time of survival and female predominance. In this retrospective case series of 14 patients with PBP, we focus on challenges in palliative care for this patient cohort, including symptom control, gastrostomy, non-invasive ventilation, and end-of-life phase. We show that rapid physical decline at the end of life is associated with bronchopulmonary infection and excessive oral secretion leading to a high level of symptom burden. Early and regular advance care planning discussions with a focus on oral secretion management with patients and caregivers are crucial.

Education on palliative care for Parkinson patients: development of the "Best care for people with late-stage Parkinson's disease" curriculum toolkit.

BACKGROUND: Palliative care education among all stakeholders involved in the care of patients with late-stage Parkinson's disease is not adequate. In fact, there are many unmet educational and training needs as confirmed with a targeted, narrative literature review. METHODS: To address these needs we have developed the "Best Care for People with Late-Stage Parkinson's Disease" curriculum toolkit. The toolkit is based on recommendations and guidelines for training clinicians and other healthcare professionals involved in palliative care, educational material developed in recent research efforts for patients and caregivers with PD and consensus meetings of leading experts in the field. The final version of the proposed toolkit was drafted after an evaluation by external experts with an online survey, the feedback of which was statistically analysed with the chi-square test of independence to assess experts' views on the relevance and importance of the topics. A sentiment analysis was also done to complement statistics and assess the experts positive and negative sentiments for the curriculum topics based on their free text feedback. RESULTS: The toolkit is compliant with Kern's foundational framework for curriculum development, recently adapted to online learning. The statistical analysis of the online survey, aiming at toolkit evaluation from external experts (27 in total), confirms that all but one (nutrition in advanced Parkinson's disease) topics included, as well as their objectives and content, are highly relevant and useful. CONCLUSIONS: In this paper, the methods for the development of the toolkit, its stepwise evolution, as well as the toolkit implementation as a Massive Open Online Course (MOOC), are presented. The "Best Care for People with Late-Stage Parkinson' s disease" curriculum toolkit can provide high-quality and equitable education, delivered by an interdisciplinary team of educators. The toolkit can improve communication about palliative care in neurological conditions at international and multidisciplinary level. It can also offer continuing medical education for healthcare providers.

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.

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

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.

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.

[Neuropalliative care aspects in patients with Parkinson's disease]. / Neuropalliativmedizinische Aspekte bei Patienten mit Parkinsonerkrankung.

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.