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Advance Care Planni...
Advance Care Planning and Care Coordination for People With Parkinson's Disease and Their Family Caregivers—Study Protocol for a Multicentre, Randomized Controlled Trial
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- Meinders, Marjan J. (author)
- Radboud University Medical Center
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- Gentile, Giovanni (author)
- University of Padova
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- Schrag, Anette E. (author)
- University College London
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- Konitsiotis, Spiros (author)
- University of Ioannina
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- Eggers, Carsten (author)
- Philipp University of Marburg
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- Taba, Pille (author)
- University of Tartu,Tartu University Hospital
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- Lorenzl, Stefan (author)
- Paracelsus Private Medical University of Salzburg,Ludwig-Maximilian University of Munich
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- Odin, Per (author)
- Lund University,Lunds universitet,Neurologi, Lund,Sektion IV,Institutionen för kliniska vetenskaper, Lund,Medicinska fakulteten,Restorative Parkinson Unit,Forskargrupper vid Lunds universitet,Neurology, Lund,Section IV,Department of Clinical Sciences, Lund,Faculty of Medicine,Lund University Research Groups
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- Rosqvist, Kristina (author)
- Lund University,Lunds universitet,Neurologi, Lund,Sektion IV,Institutionen för kliniska vetenskaper, Lund,Medicinska fakulteten,Restorative Parkinson Unit,Forskargrupper vid Lunds universitet,Neurology, Lund,Section IV,Department of Clinical Sciences, Lund,Faculty of Medicine,Lund University Research Groups
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- Chaudhuri, K. Ray (author)
- King's College London
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- Antonini, Angelo (author)
- University of Padova
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- Bloem, Bastiaan R. (author)
- Radboud University Medical Center
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- Groot, Marieke M. (author)
- Radboud University Medical Center
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(creator_code:org_t)
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- 2021-08-05
- 2021
- English.
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In: Frontiers in Neurology. - : Frontiers Media SA. - 1664-2295. ; 12
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Abstract
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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.
Subject headings
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Omvårdnad (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Nursing (hsv//eng)
Keyword
- advance care planning
- care coordination
- family caregiver
- palliative care
- Parkinson's disease
Publication and Content Type
- art (subject category)
- ref (subject category)
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Meinders, Marjan ...
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Gentile, Giovann ...
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Schrag, Anette E ...
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Konitsiotis, Spi ...
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Eggers, Carsten
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Taba, Pille
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show more...
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Lorenzl, Stefan
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Odin, Per
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Rosqvist, Kristi ...
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Chaudhuri, K. Ra ...
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Antonini, Angelo
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Bloem, Bastiaan ...
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Groot, Marieke M ...
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- MEDICAL AND HEALTH SCIENCES
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MEDICAL AND HEAL ...
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and Health Sciences
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and Nursing
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Frontiers in Neu ...
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Lund University