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

被引:4
作者
Garon, Michela [1 ,2 ,3 ]
Weck, Christiane [4 ]
Rosqvist, Kristina [5 ,6 ]
Odin, Per [5 ,6 ]
Schrag, Anette [7 ]
Krikmann, Uelle [8 ]
Pedrosa, David J. [9 ,10 ]
Antonini, Angelo [1 ,2 ,3 ]
Lorenzl, Stefan [4 ]
Martins Pereira, Sandra [11 ]
Paal, Piret [4 ,12 ]
机构
[1] Univ Padua, Study Ctr Neurodegenerat CESNE, Dept Neurosci, Parkinson & Movement Disorders Unit, Via Giustiniani 2, I-35128 Padua, Italy
[2] Univ Padua, Padua Neurosci Ctr PNC, I-35131 Padua, Italy
[3] Univ Padua, Ctr Rare Neurol Dis ERN RND, Dept Neurosci, Parkinsons Dis & Movement Disorders Unit, Padua, Italy
[4] Paracelsus Med Univ, Inst Palliat Care, Salzburg, Austria
[5] Lund Univ, Dept Clin Sci Lund, Div Neurol, Lund, Sweden
[6] Skane Univ Hosp, Dept Neurol Rehabil Med Memory & Geriatr, Lund, Sweden
[7] UCL, UCL Queen Sq Inst Neurol, Dept Clin Neurosci, London, England
[8] Univ Tartu, Inst Clin Med, Dept Neurol & Neurosurg, Tartu, Estonia
[9] Philipps Univ Marburg, Marburg, Germany
[10] Ctr Mind Brain & Behav, Marburg, Germany
[11] Univ Catol Portuguesa, CEGE: Res Ctr Management & Econ, Catol Porto Business Sch, Ethics & Sustainabil Res Area Palliat Care Res, Porto, Portugal
[12] Paracelsus Med Univ, Inst Palliat Care, Strubergasse 21, A-5020 Salzburg, Austria
关键词
Parkinson's disease; clinical guideline; palliative care; caregivers; quality of life; OF-LIFE; EXPERIENCES; PATIENT; PERSPECTIVES; INTERVIEWS; CURRICULUM; QUALITY; NEEDS; PICO;
D O I
10.1177/02692163231214408
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
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.
引用
收藏
页码:57 / 68
页数:12
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