Exploring impaired self-awareness of motor symptoms in Parkinson's disease: Resting-state fMRI correlates and the connection to mindfulness.

OBJECTIVE: To further explore the phenomenon of impaired self-awareness of motor symptoms in patients with Parkinson's Disease by using an evaluated measurement approach applied in previous studies, while also examining its connection with dispositional mindfulness and possible correlates of functional connectivity. BACKGROUND: Recently, the phenomenon of impaired self-awareness has been studied more intensively by applying different measurement and imaging methods. Existing literature also points towards a possible connection with mindfulness, which has not been examined in a cross-sectional study. There is no data available concerning correlates of functional connectivity. METHODS: Non-demented patients with idiopathic Parkinson's Disease without severe depression were tested for impaired self-awareness for motor symptoms following a psychometrically evaluated approach. Mindfulness was measured by applying the German version of the Five Facet Mindfulness Questionnaire. A subset of eligible patients underwent functional MRI scanning. Spearman correlation analyses were performed to examine clinical data. Whole-brain voxelwise regressions between seed-based connectivity and behavioral measures were calculated to identify functional connectivity correlates of impaired self-awareness scores. RESULTS: A total of 41 patients with Parkinson's Disease were included. 15 patients successfully underwent resting-state fMRI scanning. Up to 88% of patients showed signs of impaired self-awareness. Awareness for hypokinetic movements correlated with total mindfulness values and three facets, while awareness for dyskinetic movements did not. Three significant clusters between scores of impaired self-awareness in general and for dyskinetic movements were identified linking behavioral measures with the functional connectivity of the inferior frontal gyrus, the right insular cortex, the supplementary motor area, and the precentral gyrus among others. Impaired self-awareness for hypokinetic movements did not have any neural correlate. CONCLUSIONS: Clinical data is comparable with results from previous studies applying the same structured approach to measure impaired self-awareness in Parkinson's Disease. Functional connectivity analyses were conducted for the first time to evaluate neural correlates thereof. This data does not support a connection between impaired self-awareness of motor symptoms and dispositional mindfulness.

The Role of Parkinson Nurses for Personalizing Care in Parkinson's Disease: A Systematic Review and Meta-Analysis.

BACKGROUND: Quality of life (QoL) of persons with Parkinson's disease (PD) is diminished by (non-)motor symptoms, that require personalized care. Parkinson Nurses (PN) may be pivotal promoting tailored care offerings. This systematic review and meta-analysis investigates PD care models and aims at furnishing current concepts of PN to offer personalized care. OBJECTIVE: The purpose of this study is to identify the various roles and functions that PN may hold for personalized PD care. METHODS: We performed a systematic literature review, utilizing: PubMed, Web of Science, The Cochrane Library, and PsycINFO. The review qualitatively evaluated articles, which described personalized care models involving PNs and was guided by the personalized care management model. A meta-analysis compared patient-reported QoL (quantified using the 39-item Parkinson's Disease Questionnaire) between personalized care interventions involving PN versus standard care with. RESULTS: Twenty-seven publications were identified, including six randomized, controlled trials ascertaining with health related QoL (n = 1830 PwPs). The qualitative evaluation revealed that PN contribute to all aspects of personalized care. The meta-analysis showed no improved QoL in personalized care models compared to standard care, thought a great heterogeneity among study design and interventions was outlined (Standardized Mean Difference = -0.8935; 95% Confidence Interval, -2.1177 to 0.3307; z = -1.43, p = 0.1526). CONCLUSION: PN fulfil important functions in personalized PD care. For the future, a clear role definition will be necessary to adjust training for PN across healthcare systems and care settings but especially to realize their full potential for PD care.

Supporting Relatives Prior to Caregiver Burden-Preventive E-Mental Health Short Intervention for Family Members of Individuals with Parkinsonism in an Early Phase of the Disease: Protocol for a Feasibility Study.

Research on support for relatives of patients with Parkinsonism has mainly focused on caregivers, while preventive offers for non-caregiving relatives are lacking. Thus, the aim of this multicenter pilot study is to develop and assess the feasibility of a preventive psychosocial support program for relatives of patients with Parkinsonism. It specifically focuses on family members of patients who are in an early phase of the disease, are not currently caregiving, and have not yet developed distress symptoms. It includes a telemedicine-based, 6-week preventive psychological short intervention (PPSI). The main objective of this feasibility mixed-methods study is to specify the demand for an early, low-threshold, and low-cost short intervention and to collect feedback based on qualitative and quantitative data of N = 20 relatives. Secondary objectives are an evaluation of the effects of the intervention and an analysis of the study design. Future directions are to further develop the PPSI using these data. This study can serve as a basis for future randomized controlled studies on this intervention, which might fill an important gap in clinical supply.

Development of a Multidimensional Assessment Tool for the Evaluation of Holistic Quality of Life in Parkinson's Disease.

BACKGROUND: Parkinsonian syndromes are heterogeneous chronic neurodegenerative disorders associated with both motor and non-motor symptoms. The symptoms have major psychosocial effects on the quality of life of patients and can be a burden for caregivers. So far, several questionnaires have been developed to assess quality of life in Parkinsonism, but none of these include the positive sides on well-being such as personal and social resilience factors. OBJECTIVE: The aim of this study is to develop a digital framework for a longitudinal assessment of quality of life during the progression of Parkinson's disease. METHODS: The CHAPO model (Challenges and Potentials) has been established in a vast study by Wagner et al. to assess the quality of life of older people. This model includes environmental and individual factors, life chances, and life results, such as individual life evaluation, from a subjective as well as an objective point of view. Therefore, it has been adapted in several development steps to include the specific aspects that affect quality of life in Parkinsonian syndromes. The development process included 6 steps: definition, refinement, operationalization, piloting/debriefing, adjustment, and integration. RESULTS: The development of the CHAPO-PD model has been completed and it represents the first main result of this study. CONCLUSION: By taking a holistic understanding of quality of life into account, we expect to detect previously unrecognized factors, which correlate to the subjective well-being of Parkinson's disease patients, and aim to use these findings to improve the health care structures for patients with Parkinson's disease and related disorders.

Pilot Study of Mindfulness Training on the Self-Awareness of Motor Symptoms in Parkinson's Disease - A Randomized Controlled Trial.

Objective: This study aims to evaluate feasibility and effects of a newly developed mindfulness intervention tailored to specific needs of patients with Parkinson's disease (PD). Background: The phenomenon of impaired self-awareness of motor symptoms (ISAm) in PD might be reduced by increasing patients' mindfulness. A PD-specific mindfulness intervention has been developed and evaluated as a potential treatment option: IPSUM ("Insight into Parkinson's Disease Symptoms by using Mindfulness"). Methods: IPSUM's effectiveness is evaluated by comparing an intervention with a waitlist-control group. Applying a pre-post design, patients were assessed before, directly after and 8weeks after treatment. The primary outcome was the change in a quantitative ISAm score from baseline to post-assessment. Secondary outcome measures were PD-related affective changes and neuropsychological test performance. Feasibility was evaluated via feedback forms. Results: In total, 30 non-depressed and non-demented PD patients were included (intervention: n=14, waitlist-control: n=16). ISAm score did not change significantly, but the training group showed greater performance in sustained attention and language tasks over time. Additional changes included greater mindfulness as well as less sleeping problems and anxiety. Cognitive disturbances, apathy, and sleeping problems worsened only in the waitlist-control group. Patients' feedback regarding the training concept and material was excellent. Conclusion: Insight into Parkinson's Disease Symptoms by using Mindfulness has not been capable of reducing ISAm in PD patients but appears to be a feasible and effective concept to, among others, support mental health in the mid-term. It has to be noted though that the study was stopped beforehand because of the SARS CoV-2 pandemic. The lack of findings might therefore be caused by a lack of statistical power. The need for further research to better understand the mechanisms of ISAm and its connection to mindfulness in PD is highlighted.

Deriving Implications for Care Delivery in Parkinson's Disease by Co-Diagnosing Caregivers as Invisible Patients.

For persons with Parkinson's disease, the loss of autonomy in daily life leads to a high level of dependency on relatives' support. Such dependency strongly correlates with high levels of perceived stress and psychosocial burden in informal caregivers. Global developments, such as demographic change and the associated thinning infrastructure in rural areas cause a continuously growing need for medical and nursing care. However, this need is not being adequately met. The resulting care gap is being made up by unpaid or underpaid work of informal caregivers. The double burden of care work and gainful employment creates enormous health-related impairments of the informal caregivers, so that they eventually become invisible patients themselves. Expectedly, those invisible patients do not receive the best care, leading to a decrease in quality of life and, in the end, to worse care for PD patients. Suggested solutions to relieve relatives, such as moving the person affected by Parkinson's to a nursing home, often do not meet the wishes of patients and informal caregivers, nor does it appear as a structural solution in the light of demographic change against an economic background. Rather, it requires the development, implementation and evaluation of new, holistic approaches to care that make invisible patients visible.

Moving towards Integrated and Personalized Care in Parkinson's Disease: A Framework Proposal for Training Parkinson Nurses.

Delivering healthcare to people living with Parkinson's disease (PD) may be challenging in face of differentiated care needs during a PD journey and a growing complexity. In this regard, integrative care models may foster flexible solutions on patients' care needs whereas Parkinson Nurses (PN) may be pivotal facilitators. However, at present hardly any training opportunities tailored to the care priorities of PD-patients are to be found for nurses. Following a conceptual approach, this article aims at setting a framework for training PN by reviewing existing literature on care priorities for PD. As a result, six prerequisites were formulated concerning a framework for training PN. The proposed training framework consist of three modules covering topics of PD: (i) comprehensive care, (ii) self-management support and (iii) health coaching. A fourth module on telemedicine may be added if applicable. The framework streamlines important theoretical concepts of professional PD management and may enable the development of novel, personalized care approaches.