Parkinson&amp;rsquo;s disease permanent care unit: managing the chronic-palliative interface

Lökk, Johan

doi:10.2147/jmdh.s17713

Cited by 12 publications

(2 citation statements)

References 31 publications

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“…An evidence-based intervention will be evaluated consisting of a nurse-led, person-centred palliative care model for people with PD living at home, assisted living situation, or nursing homes. The intervention deals with two major challenges that many people with PD encounter ( 31 , 32 ):…”

Section: Introductionmentioning

confidence: 99%

Advance Care Planning and Care Coordination for People With Parkinson's Disease and Their Family Caregivers—Study Protocol for a Multicentre, Randomized Controlled Trial

et al. 2021

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Background: Parkinson's disease (PD) is a progressive neurodegenerative disease with motor- and non-motor symptoms. When the disease progresses, symptom burden increases. Consequently, additional care demands develop, the complexity of treatment increases, and the patient's quality of life is progressively threatened. To address these challenges, there is growing awareness of the potential benefits of palliative care for people with PD. This includes communication about end-of-life issues, such as Advance Care Planning (ACP), which helps to elicit patient's needs and preferences on issues related to future treatment and care. In this study, we will assess the impact and feasibility of a nurse-led palliative care intervention for people with PD across diverse European care settings.Methods: The intervention will be evaluated in a multicentre, open-label randomized controlled trial, with a parallel group design in seven European countries (Austria, Estonia, Germany, Greece, Italy, Sweden and United Kingdom). The “PD_Pal intervention” comprises (1) several consultations with a trained nurse who will perform ACP conversations and support care coordination and (2) use of a patient-directed “Parkinson Support Plan-workbook”. The primary endpoint is defined as the percentage of participants with documented ACP-decisions assessed at 6 months after baseline (t1). Secondary endpoints include patients' and family caregivers' quality of life, perceived care coordination, patients' symptom burden, and cost-effectiveness. In parallel, we will perform a process evaluation, to understand the feasibility of the intervention. Assessments are scheduled at baseline (t0), 6 months (t1), and 12 months (t2). Statistical analysis will be performed by means of Mantel–Haenszel methods and multilevel logistic regression models, correcting for multiple testing.Discussion: This study will contribute to the current knowledge gap on the application of palliative care interventions for people with Parkinson's disease aimed at ameliorating quality of life and managing end-of-life perspectives. Studying the impact and feasibility of the intervention in seven European countries, each with their own cultural and organisational characteristics, will allow us to create a broad perspective on palliative care interventions for people with Parkinson's disease across settings.Clinical Trial Registration:www.trialregister.nl, NL8180.

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Section: Introductionmentioning

confidence: 99%

Advance Care Planning and Care Coordination for People With Parkinson's Disease and Their Family Caregivers—Study Protocol for a Multicentre, Randomized Controlled Trial

et al. 2021

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“… xii A good example of a unit dedicated to the needs of chronic patients at the end of their lives is that of a Parkinson's disease permanent care unit 22…”

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confidence: 99%

The ethics of imperfect cures: models of service delivery and patient vulnerability: Table 1

Lanoix

2013

J Med Ethics

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A rising number of patients require continuing or palliative services and this means that they will need to transition from one model of healthcare delivery to another. If it is generally recognised that patient vulnerability to inadequate services increases when the setting in which patient receives care changes, it is usually taken to be the result of poor coordination of services or personnel. Recognising that an integrated system is essential to adequate access, the point that I put forward in this paper is that the centrality of acute care services affects the way in which chronic and palliative services are structured and, consequently, their availability. I argue that the problem originates in the manner in which some of the foundational concepts of the acute care model are imported into the other models of care delivery. In order to make this case, I review the three main models of healthcare service delivery by focusing my analysis along three axes: the goal of the care model; the predominant understanding of autonomy implicit in the model; and, the main actors in the care relationship. By examining how the various concepts translate from one model to the next, I discuss what I identify to be one of the main conceptual obstacles to less problematic transitioning, the notion of autonomy and the corresponding view of the patient as an isolated agent.

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Quelles thérapeutiques proposer dans la maladie de Parkinson du sujet âgé ?

Roze

2012

cah. année gerontol.

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Parkinson’s disease permanent care unit: managing the chronic-palliative interface

Cited by 12 publications

References 31 publications

Advance Care Planning and Care Coordination for People With Parkinson's Disease and Their Family Caregivers—Study Protocol for a Multicentre, Randomized Controlled Trial

Advance Care Planning and Care Coordination for People With Parkinson's Disease and Their Family Caregivers—Study Protocol for a Multicentre, Randomized Controlled Trial

The ethics of imperfect cures: models of service delivery and patient vulnerability: Table 1

Quelles thérapeutiques proposer dans la maladie de Parkinson du sujet âgé ?

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