Palliative care and its emerging role in Multiple System Atrophy and Progressive Supranuclear Palsy

Wiblin, Louise; Lee, Mark; Burn, David J.

doi:10.1016/j.parkreldis.2016.10.013

Cited by 59 publications

(35 citation statements)

References 65 publications

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“…Patient aggression and depression have been reported as sources of stress. 4 When these positive predictors of mortality appear, clinicians should consider discussing ACP with patients or caregivers (Table 4).…”

Section: Discussionmentioning

confidence: 99%

“…Because there is currently no disease-modifying treatment for patients with PSP, ACP is an important component of clinical care, for which patients and their caregivers can reach a consensus during the clinical course of disease. 4 In addition, symptomatic care plays an important role. Symptoms relevant to patients with PSP include dystonia, drooling, gaze palsy (also known as reduced blinking), constipation, and apathy.…”

Section: Discussionmentioning

confidence: 99%

“…Symptoms relevant to patients with PSP include dystonia, drooling, gaze palsy (also known as reduced blinking), constipation, and apathy. 4 Drooling could be managed by the administration of sublingual atropine drops (Table 4). 4 Reduced blinking could be managed by frequent application of lubricating eyedrops.…”

Section: Discussionmentioning

confidence: 99%

“…4 Drooling could be managed by the administration of sublingual atropine drops (Table 4). 4 Reduced blinking could be managed by frequent application of lubricating eyedrops. Gaze palsy could be managed by the use of prisms or audiobooks (Table 4).…”

Section: Discussionmentioning

confidence: 99%

“…In addition to the need for accurate diagnosis of PSP, the natural clinical course of the disease is a concern for caregivers. 3,4 Important problems for patients with PSP include increased risks of falls, dysphagia, aspiration pneumonia, pressure injuries, caregiver stress leading to institutionalisation, and long-term mortality. 1 Given the lack of definitive treatment, it remains prudent for clinicians to educate caregivers regarding the natural course of PSP, which will ensure that caregivers are better prepared to care for their relatives; it will also allow implementation of different methods to avoid longterm complications, and may facilitate discussions of advanced care planning (ACP) at earlier stages of disease.…”

Section: 香港進行性核上性麻痺患者的自然臨床過程mentioning

confidence: 99%

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Natural clinical course of progressive supranuclear palsy in Chinese patients in Hong Kong

Shea

Shum

et al. 2019

Hong Kong Med J

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Progressive supranuclear palsy (PSP) is a common type of atypical parkinsonism. To the best of our knowledge, there has been no study of its natural clinical course among Chinese patients. Methods: This retrospective study included 21 patients with PSP who had radiological evidence of midbrain atrophy (confirmed by magnetic resonance imaging) from the geriatrics clinics of Queen Mary Hospital and Tuen Mun Hospital. Clinical information was retrieved from clinical records, including age at onset, age at presentation, age at death, duration of symptoms, level of education, sex, presenting scores on Cantonese version of Mini-Mental State Examination, clinical symptoms, and history of levodopa or dopamine agonist intake and response. Clinical symptoms were clustered into the following categories and the dates of development of these symptoms were determined: motor symptoms, bulbar symptoms, cognitive symptoms, and others. Results: Motor symptoms developed early in the clinical course of disease. Cox proportional hazards modelling showed that the number of episodes of pneumonia, time to vertical gaze palsy, and presence of pneumonia were predictive of mortality. Apathy, dysphagia, pneumonia, caregiver stress, and pressure injuries were predictive of mortality when analysed

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: 香港進行性核上性麻痺患者的自然臨床過程mentioning

confidence: 99%

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Natural clinical course of progressive supranuclear palsy in Chinese patients in Hong Kong

Shea

Shum

et al. 2019

Hong Kong Med J

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Clinical Practices and Opinions toward Gastrostomy Use in Patients with Atypical Parkinsonian Syndromes: A National Survey in the UK

Kobylecki,

Goh,

Mohammad

et al. 2024

Movement Disord Clin Pract

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BackgroundSevere dysphagia poses a significant challenge for clinicians regarding feeding tube choices, practices, and timing due to a lack of evidence‐based guidance.ObjectivesTo assess national clinical practices and opinions on gastrostomy use in patients with atypical parkinsonian syndromes (APS) across the UK.MethodsOnline survey was administered to clinicians and allied health professionals regarding availability of services, current use, perceived advantages, and problems associated with gastrostomy insertion.ResultsWe received responses from 47 respondents across 12 UK centers, including 44 clinicians specialized in APS. Consensus was observed regarding primary indications for gastrostomy insertion and circumstances justifying avoidance of the procedure. Limitations in recommending gastrostomy due to insufficient evidence on safety and outcomes, survival and quality of life were identified. Widespread agreement on delays in gastrostomy discussions was highlighted as a challenge in optimizing patient care, together with variability in current practices and concerns over the lack of a standardized gastrostomy pathway, emphasizing the need for further research to address existing evidence gaps.ConclusionThis multi‐center survey highlights agreement among clinicians on key aspects of indication, challenges, and limitations such as delayed decision‐making and the absence of standardized pathways regarding the timing, method, and overall approach to gastrostomy insertion in APS. This study identified next steps to facilitate a more structured approach to future research toward a consensus on best practices for gastrostomy in APS. Addressing these challenges is crucial for enhancing patient outcomes and overall care quality in APS.

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Risk of Hospitalization and Death for COVID‐19 in People with Parkinson's Disease or Parkinsonism

et al. 2020

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Background The risk of COVID‐19 and related death in people with Parkinson's disease or parkinsonism is uncertain. The aim of the study was to assess the risk of hospitalization for COVID‐19 and death in a cohort of patients with Parkinson's disease or parkinsonism compared with a control population cohort, during the epidemic bout (March–May 2020) in Bologna, northern Italy. Methods Participants of the ParkLink study with the clinical diagnosis of Parkinson's disease or parkinsonism and people anonymously matched (ratio 1:10) for sex, age, district, and Charlson Index were included. The hospital admission rate for COVID‐19 (February 26–May 31, 2020) and the death rate for any cause were the outcomes of interest. Results The ParkLink cohort included 696 subjects with Parkinson's disease and 184 with parkinsonism, and the control cohort had 8590 subjects. The 3‐month hospitalization rate for COVID‐19 was 0.6% in Parkinson's disease, 3.3% in parkinsonism, and 0.7% in controls. The adjusted hazard ratio (age, sex, district, Charlson Index) was 0.8 (95% CI, 0.3–2.3, P = 0.74) in Parkinson's disease and 3.3 (1.4–7.6, P = 0.006) in parkinsonism compared with controls. Twenty‐nine of the infected subjects died; 30‐day fatality rate was 35.1%, without difference among the 3 groups. Six of 10 Parkinson's disease/parkinsonism patients had the infection during hospitalization or in a nursing home. Conclusions Parkinson's disease per se probably is not a risk factor for COVID‐19 hospitalization. Conversely, parkinsonism is an independent risk factor probably because of a more severe health status, entailing higher care dependence and placement in high‐infection‐risk accommodations. © 2020 The Authors. Movement Disorders published by Wiley Periodicals LLC. on behalf of International Parkinson and Movement Disorder Society.

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Palliative care and its emerging role in Multiple System Atrophy and Progressive Supranuclear Palsy

Cited by 59 publications

References 65 publications

Natural clinical course of progressive supranuclear palsy in Chinese patients in Hong Kong

Natural clinical course of progressive supranuclear palsy in Chinese patients in Hong Kong

Clinical Practices and Opinions toward Gastrostomy Use in Patients with Atypical Parkinsonian Syndromes: A National Survey in the UK

Risk of Hospitalization and Death for COVID‐19 in People with Parkinson's Disease or Parkinsonism

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