Novel Outreach Program and Practical Strategies for Patients with Parkinsonism in the COVID-19 Pandemic.

The coronavirus disease 2019 (COVID-19) pandemic has upended daily life and neurologic care for most patients, including those with Parkinson's disease and parkinsonism. Disruptions to routine care, high volumes of patient and caregiver calls, and our patients' risk of infection and complications inspired a proactive COVID-19 outreach program. This program targets patients with advanced Parkinson's disease and related disorders, specifically those who are homebound, receiving or eligible for palliative care, and/or lacking support networks. We describe the program and practical strategies providers can implement to support wellbeing and successful telehealth uptake during this time of social isolation and gradual reopening.

The presence of a caregiver is associated with patient outcomes in patients with Parkinson's disease and atypical parkinsonisms.

INTRODUCTION: Approximately 88% of men and 79% of women with Parkinson's disease (PD) identify an informal caregiver. Although caregivers can play a key role in supporting patients, little is known about how and whether PD patients with and without caregivers differ in terms of physical, cognitive, and mood outcomes. This study explored whether caregiver presence was associated with variations in patient presentation and outcomes in a palliative PD and atypical PD population. METHODS: Secondary data on individuals with PD and their caregivers came from baseline data of a 3-site randomized controlled trial of outpatient palliative care for PD in the US and Canada. Measures included: MDS UPDRS III, Montreal Cognitive Assessment, quality of life (QOL) measures, depression, prolonged grief, spirituality (FACIT SP-12) and Palliative Performance Scale. RESULTS: Of 210 participants, 175 (83%) had a caregiver. Patients with caregivers had greater motor difficulty, lower cognitive scores, and greater palliative needs as measured by the Palliative Performance Scale. Despite poorer cognitive and motor function, those with caregivers had higher QOL as measured by the Quality of Life in Alzheimer Disease and less spiritual distress. There were no group differences on anxiety, depression, or grief. Caregiver presence moderated the association between lower MoCA score and worse motor symptoms. CONCLUSION: Findings of the present study highlight the influence of caregiver engagement on PD patient outcomes. These findings have implications for clinical practice and suggest that presence of a caregiver may be an important modifying variable on patient outcomes to examine in future research.

Rasch analysis of the carers quality of life questionnaire for parkinsonism.

OBJECTIVE: To assess the psychometric properties of the Carers Quality of Life Questionnaire for Parkinsonism using a Rasch modeling approach and determine the optimal cut-off score. METHODS: We performed a Rasch analysis of the survey answers of 430 carers of patients with atypical parkinsonism. RESULTS: All of the scale items demonstrated acceptable goodness of fit to the Rasch model. The scale was unidimensional and no notable differential item functioning was detected in the items regarding age and disease type. Rating categories were functioning adequately in all scale items. The scale had high reliability (.95) and construct validity and a high degree of precision, distinguishing between 5 distinct groups of carers with different levels of quality of life. A cut-off score of 62 was found to have the optimal screening accuracy based on Hospital Anxiety and Depression Scale subscores. CONCLUSION: The results suggest that the Carers Quality of Life Questionnaire for Parkinsonism is a useful scale to assess carers' quality of life and allows analyses requiring interval scaling of variables. © 2016 International Parkinson and Movement Disorder Society.

Assistência à pessoa com parkinson no âmbito da estratégia de saúde da família / Assistance to the person with parkinson carrier in the context of familyhealth strategy / La asistencia a la persona con parkinson dentro de la estrategia salud de la familia

Objective: To analyze the conceptions that the bearer of the Parkinson Disease about the comprehensive care performed by nurses. Method: The research is descriptive and exploratory with a qualitative approach. Data collection was carried out through a semi-structured interview. Five patients with PD were interviewed receiving care in the Family Health Strategy (ESF) in the city of Acari/RN. Results: it was evident the need to implementactions to health DP carrier in individually and collectively in the city´s ESFs, and carry out the work of nurses as responsible for health promotion and prevention in primary care providing comprehensive care based on the principle of integrality. Conclusion: it is concluded that there are not therapeutic plan execution directed to the health of DP carriers individually and collectively in the ESFs. Thus, the nurse’s role is being responsible for health promotion and prevention in primary care is performed.

Objetivo: Analisar as concepções que o portador da Doença de Parkinson (DP) detém sobre a assistência integral realizada pelo enfermeiro. Método: a investigação é descritivo-exploratória, com abordagem qualitativa. A coleta de informações realizou-se por meio de uma entrevista semiestruturada. Foram entrevistados cinco acometidos pela DP que recebem assistência na Estratégia de Saúde da Família (ESF) do município de Acari/RN. Resultados: evidenciou-se a necessidade da implementação de ações voltadas a sua saúde, em âmbito individual e coletivo nas ESF do município, e efetivar a atuação do enfermeiro como responsável pela promoção e prevenção à saúde na atenção primária prestando assistência integral baseada no princípio da integralidade. Conclusão: concluiu-se que não ocorre execução de plano terapêutico direcionado à saúde da pessoa com DP em âmbito individual e coletivo nas ESFs. Desta forma,deve-se efetivar a atuação do enfermeiro como responsável pela promoção e prevenção à saúde na atenção primária.

Objetivo: Analizar las concepciones que el portador de la Enfermedadde Parkinson tiene sobre la atención integral realizada por enfermeras. Método: la investigación es descriptiva y exploratoria con un enfoque cualitativo. Los datos se recogieron en octubre mediante entrevistas semi-estructuradas. Entrevistamos a cinco Pacientes con enfermedad de Parkinson que reciben atención en la Estrategia de Salud de la Familia (ESF) en la ciudad de Acari/RN. Resultados: se evidenció la necesidad de acciones para el soporte de la salud de los DP en forma individual y colectiva en las ESF de la ciudad, y llevar a cabo el trabajo de las enfermeras responsable de promoción de la salud y la prevención en la atención primaria de la atención integral basado en el principio de la integralidad. Conclusión: se concluye que no se da soporte al DP en la salud en el plan terapéutico en forma individual y colectiva en las ESF. De este modo, el papel de la enfermera es ser responsable de promoción de la salud y la prevención en la atención primaria.

Medication use in people with late stage Parkinson's disease and parkinsonism living at home and in institutional care in north-east England: A balance of symptoms and side-effects?

BACKGROUND: People with Parkinson's disease (PD) and parkinsonism living in care homes (residential or nursing care) in the UK represent around 10-15% of all people with PD and 3-5% of all care home residents. There are few previous data on medication use in those living in care homes with PD. In this study we aimed to compare medication use in a representative cohort of people with PD living in care homes in north-east England with those living in their own homes. METHOD: All people with late stage (Hoehn and Yahr III-V) idiopathic PD, PD dementia, or atypical parkinsonian syndromes under the care of the Northumbria Healthcare NHS Foundation Trust PD service on 1st January 2015 were identified. Demographic, disease characteristics and medication use data were collected from an audit of medical notes of all those identified. RESULTS: We identified 377 people who met the inclusion criteria, 91 (24.1%) of whom were living in a care home. Disease stage, age and age at disease onset were all significantly higher and levodopa equivalent dose significantly lower in those living in care homes, although disease duration and levodopa dose were not. Greater age, lower levodopa equivalent dose and higher disease stage were independently associated with being in a care home. CONCLUSIONS: Although people in care homes had more advanced disease, they were on a significantly lower levodopa equivalent dose. This is likely to be due to the requirement to balance symptom management with drug side-effects.

Diagnostic accuracy of Parkinson's disease and atypical parkinsonism in nursing homes.

INTRODUCTION: Management of Parkinson's disease (PD) and atypical parkinsonism in nursing homes depends on a timely and accurate diagnosis. However, little is known about the diagnostic accuracy of these parkinsonian syndromes in nursing homes. We examined this issue in a large group of Dutch nursing home residents. METHODS: Twelve large nursing home organizations in the Netherlands accounting for 100 nursing homes with a total population of 5480 residents participated. Residents with PD or atypical parkinsonism were identified according to their nursing home medical chart diagnosis. Additionally, local pharmacists provided a list of all residents using antiparkinson medication. We compared the admission diagnosis to a clinical diagnosis made in the study, based upon interview and detailed neurological examination by movement disorders experts. Diagnoses were based on accepted clinical criteria for PD and atypical parkinsonism. RESULTS: In the total population of 5480 residents, 258 had previously been diagnosed with a form of parkinsonism according to their medical record. In 53 of these residents (20.5%) we changed or rejected the diagnosis. Specifically, we found no parkinsonism in 22 of these 53 residents (8.5% of all patients with suspected parkinsonism). In the remaining 31 residents (12%), we established a new diagnosis within the parkinsonian spectrum. CONCLUSIONS: In a large population of Dutch nursing home residents, 20% of diagnoses within the parkinsonian spectrum were inaccurate. Almost 9% of residents had inadvertently received a diagnosis of parkinsonism. Better recognition of parkinsonism in nursing homes is important, because of the consequences for management and prognosis.

Optimizing care of residents with Parkinsonism in supervised facilities.

People with Parkinsonism (PWP) in residential facilities are usually elderly, cognitively impaired, physically disabled with poor quality of life and a high mortality rate. This paper aims to determine if the care of PWP in residential facilities could be improved by addressing staff knowledge on Parkinson related issues. A curriculum based on the Victorian Comprehensive Parkinson Program (VCPP) was developed and delivered to 118 staff members in 9 facilities across Melbourne. Measures of staff knowledge were undertaken at baseline, 1, 3 and 12 months. Data from a total of 49 residents were used in the analysis. Measures were taken at baseline, 1, 3 and 12 months included dementia screen (MMSE), geriatric depression scale (GDS), quality of life (PDQ39), fatigue (PDFS16), monthly falls diary, Unified Parkinson Disease Rating Scale (I,II,III) Hoehn & Yahr scale (H&Y) and resident/family questionnaire (RFQ) which focused on quality of care provision. It was found that the staff knowledge assessment scores (max = 37) significantly improved post education (P < 0.01) from baseline mean (11.1) and were maintained to 12 months mean (29.0). The residents group improved significantly for all measures at 1 month and these improvements were maintained up to 12 months (except for UPDRS III). This study demonstrated how a simple intervention, resulting in improved staff knowledge, produced a significant and clinically meaningful improvement in the care of PWP.

[The nursing experience of a patient with parkinsonian type of multiple system atrophy].

This article describes the nursing experience of a patient with multiple system atrophy-parkinsonian type (MSA-P). The writer collected subjective and objective information using observation, interviews, and nursing care during the time period May 22 to June 3, 2006. A holistic nursing assessment and nursing problems were established as body image disturbance, risk for aspiration, constipation and family support, self-care deficit and risk for fall. Through individual nursing intervention and family support, the patient accommodated himself to the physical activities and mental situation. We hope that this complete nursing experience can in future serve as a reference for other nurses in the MSA-P field as they assist similar patients.