Why Palliative Care Applies to Parkinson's Disease

Bouça‐Machado, Raquel; Lennaerts‐Kats, Herma; Bloem, Bastiaan R.; Ferreira, Joaquim J.

doi:10.1002/mds.27309

Cited by 14 publications

(12 citation statements)

References 24 publications

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“…We further developed elements that could be helpful in implementing ACP in practice. As earlier studies [5,14,15,55] describe difficulties in role and responsibility on this topic in PD, we found consensus on statements that give direction on how, what and by whom ACP could be performed. Our findings suggest that healthcare professionals of all disciplines do have a role or are entitled to introduce ACP.…”

Section: Plos Onementioning

confidence: 55%

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RADPAC-PD: A tool to support healthcare professionals in timely identifying palliative care needs of people with Parkinson’s disease

et al. 2020

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Background Parkinson's disease (PD) is a progressive degenerative disease without curative treatment perspectives. Even when palliative care for people with PD seems to be beneficial, the need for palliative care is often not timely recognized. Aim Our aim was to develop a tool that can help healthcare professionals in timely identifying palliative care needs in people with PD. Design We used a mixed-methods design, including individual and focus group interviews and a three-round modified Delphi study with healthcare professionals from a multidisciplinary field. Results Data from the interviews suggested two distinct moments in the progressive PD trajectory: 1) an ultimate moment to initiate Advance Care Planning (ACP); and 2) the actual start of the palliative phase. During the Delphi process, six indicators for ACP were identified, such as presence of frequent falls and first unplanned hospital admission. The start of the palliative phase involved four indicators: 1) personal goals have started to focus on maximization of comfort; 2) care needs have changed; 3) PD drug treatment has become less effective or an increasingly complex regime of drug treatments is needed; and 4) specific PD-symptoms or complications have appeared, such as significant weight loss, recurrent infections, or

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Section: Plos Onementioning

confidence: 55%

“…Although the potential need for palliative care is increasingly acknowledged, still little is known about effective and useful components in PD patients [4,5,14]. There is no clear conceptualization of palliative care in PD and as a result, many healthcare professionals experience difficulties in providing palliative care [15][16][17][18].…”

Section: Introductionmentioning

confidence: 99%

RADPAC-PD: A tool to support healthcare professionals in timely identifying palliative care needs of people with Parkinson’s disease

et al. 2020

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“…Overall high-intensity treadmill and cueing strategies have obtained some positive results on gait and FoG, Tai Chi and Qigong, and aquatic exercise for balance, LSVT LOUD for speech, VAST and EMST for swallowing and warm-up exercises, and Nintendo Wii Fit™ skills for cognitive symptoms ( Table 2 ). As these symptoms are particularly troublesome and resistant to dopaminergic and surgical treatment in more advanced stages of PD, attention should be given to the development of multidisciplinary non-pharmacological interventions as early as possible before these symptoms become troublesome, as already suggested for palliative care intervention ( 84 ). An early treatment approach could help to delay or reduce the high burden and/or medical complications that are often associated with the appearance of these disability milestones in later PD, in spite of the absence of any strong evidences of a clear disease-modifying effect.…”

Section: Discussionmentioning

confidence: 99%

Non-pharmacological Treatment Challenges in Early Parkinson's Disease for Axial and Cognitive Symptoms: A Mini Review

et al. 2020

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Background: Parkinson's disease (PD) is now known to be a multisystemic heterogeneous neurodegenerative disease, including a wide spectrum of both motor and non-motor symptoms. PD patients' management must encompass a multidisciplinary approach to effectively address its complex nature. There are still challenges in terms of treating axial (gait, balance, posture, speech, and swallowing) and cognitive symptoms that typically arise with disease progression becoming poorly responsive to dopaminergic or surgical treatments. Objective: The objectives of the study are to further establish the presentation of axial and cognitive symptoms in early PD [Hoehn and Yahr (H&Y) scale ≤ 2] and to discuss the evidence for non-pharmacological approaches in early PD. Results: Mild and subtle changes in the investigated domains can be present even in early PD. Over the last 15 years, a few randomized clinical trials have been focused on these areas. Due to the low number of studies and the heterogeneity of the results, no definitive recommendations are possible. However, positive results have been obtained, with effective treatments being high-intensity treadmill and cueing for gait disturbances, high-intensity voice treatment, video-assisted swallowing therapy for dysphagia, and warm-up exercises and Wii Fit TM training for cognition. Conclusions: Considering the association of motor, speech, and cognitive function, future trials should focus on multidisciplinary approaches to combined non-pharmacological management. We highlight the need for a more unified approach in managing these "orphan" symptoms, from the very beginning of the disease. The concept "the sooner the better" should be applied to multidisciplinary non-pharmacological management in PD.

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“…In addition, specialist palliative care (specialised or specialty palliative care) can be considered when the patient’s or family’s needs exceed the competence and confidence of healthcare professionals or when access to certain services is required. The need to further develop and implement specialised palliative care for persons with PD has received more attention over the last decades [11–13]. However, despite these efforts, it is often not a common component of current PD care programs.…”

Section: Introductionmentioning

confidence: 99%

Palliative care for persons with Parkinson’s disease: a qualitative study on the experiences of health care professionals

et al. 2019

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Background Parkinson’s disease (PD) is a chronic and neurodegenerative disease associated with a wide variety of symptoms. The risk of complications increases with progression of the disease. These complications have a tremendous impact on the quality of life of people with PD. The aim of this study was to examine health care professionals’ experiences of potential barriers and facilitators in providing palliative care for people with PD in the Netherlands. Methods This was a qualitative descriptive study. The data were collected from 10 individual in-depth interviews and three focus groups ( n = 29) with health care professionals. Health care professionals were selected based on a positive answer to the question: “In the past 2 years, did you treat or support a person with PD who subsequently died?” The data were analyzed by thematic text analysis. Results Health care professionals supported the development of a palliative care system for PD but needed to better understand the essence of palliative care. In daily practice, they struggled to identify persons’ needs due to interfering PD-specific symptoms such as cognitive decline and communication deficits. Timely addressing the personal preferences for providing palliative care was identified as an important facilitator. Health care professionals acknowledged being aware of their lack of knowledge and of their little competence in managing complex PD. Findings indicate a perceived lack of care continuity, fragmentation of services, time pressure and information discontinuity. Conclusions Health care professionals experienced several facilitators and barriers to the provision of palliative care to people with PD. There is a need to improve the knowledge on complex PD and the continuity of information, as well as optimize coordination and deliver care based on a persons’ preferences. Additional training can help to become more knowledgeable and confident. Electronic supplementary material The online version of this article (10.1186/s12904-019-0441-6) contains supplementary material, which is available to authorized users.

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Why Palliative Care Applies to Parkinson's Disease

Cited by 14 publications

References 24 publications

RADPAC-PD: A tool to support healthcare professionals in timely identifying palliative care needs of people with Parkinson’s disease

RADPAC-PD: A tool to support healthcare professionals in timely identifying palliative care needs of people with Parkinson’s disease

Non-pharmacological Treatment Challenges in Early Parkinson's Disease for Axial and Cognitive Symptoms: A Mini Review

Palliative care for persons with Parkinson’s disease: a qualitative study on the experiences of health care professionals

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