Advance care planning in Parkinson’s disease: ethical challenges and future directions

Sokol, Leonard L.; Young, Michael J.; Paparian, Jack; Kluger, Benzi M.; Lum, Hillary D.; Besbris, Jessica; Kramer, Neha M.; Lang, Anthony E.; Espay, Alberto J.; Dubaz, Ornella; Miyasaki, Janis; Matlock, Daniel D.; Simuni, Tanya; Cerf, Moran

doi:10.1038/s41531-019-0098-0

Cited by 40 publications

(38 citation statements)

References 48 publications

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“…Data from a recent randomized trial highlight the value of palliative care for improving quality of life in PSP (220) and establish the need for innovative, integrated palliative care models, especially in the early disease stages (221). However, a multitude of interacting patient-and clinician-level factors may delay palliative care referral in PSP/CBS (222).…”

Section: Advance Care Planning and Caregiver Burdenmentioning

confidence: 99%

Best Practices in the Clinical Management of Progressive Supranuclear Palsy and Corticobasal Syndrome: A Consensus Statement of the CurePSP Centers of Care

et al. 2021

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Progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS; the most common phenotype of corticobasal degeneration) are tauopathies with a relentless course, usually starting in the mid-60s and leading to death after an average of 7 years. There is as yet no specific or disease-modifying treatment. Clinical deficits in PSP are numerous, involve the entire neuraxis, and present as several discrete phenotypes. They center on rigidity, bradykinesia, postural instability, gait freezing, supranuclear ocular motor impairment, dysarthria, dysphagia, incontinence, sleep disorders, frontal cognitive dysfunction, and a variety of behavioral changes. CBS presents with prominent and usually asymmetric dystonia, apraxia, myoclonus, pyramidal signs, and cortical sensory loss. The symptoms and deficits of PSP and CBS are amenable to a variety of treatment strategies but most physicians, including many neurologists, are reluctant to care for patients with these conditions because of unfamiliarity with their multiplicity of interacting symptoms and deficits. CurePSP, the organization devoted to support, research, and education for PSP and CBS, created its CurePSP Centers of Care network in North America in 2017 to improve patient access to clinical expertise and develop collaborations. The directors of the 25 centers have created this consensus document outlining best practices in the management of PSP and CBS. They formed a writing committee for each of 12 sub-topics. A 4-member Steering Committee collated and edited the contributions. The result was returned to the entire cohort of authors for further comments, which were considered for incorporation by the Steering Committee. The authors hope that this publication will serve as a convenient guide for all clinicians caring for patients with PSP and CBS and that it will improve care for patients with these devastating but manageable disorders.

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Section: Advance Care Planning and Caregiver Burdenmentioning

confidence: 99%

Best Practices in the Clinical Management of Progressive Supranuclear Palsy and Corticobasal Syndrome: A Consensus Statement of the CurePSP Centers of Care

et al. 2021

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“…Individuals with life-limiting illnesses confront complex existential issues. [1][2][3][4] Select interventions can effectively lessen these symptoms toward end of life, mostly within the cancer population. 2 Meaning-centered psychotherapy (MCP), an efficacious psychotherapeutic intervention, focuses on four sources of meaning in life that can become resources for patients who experience various forms of suffering.…”

Section: Introductionmentioning

confidence: 99%

Social Media Perceptions of Legacy-Making: A Qualitative Analysis

Sokol

Jordan

Applebaum

et al. 2020

Palliative Medicine Reports

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“…In particular, when de ning subpopulations of patients, it is important for the grouping factors to be simple, implementable and interpretable 18 , which is certainly the case for age at onset. On the individual level, prognostic information can be useful for guiding treatment choices and for planning for the future, which is identi ed as a key need for patients and care partners 19,20 . For drug development, knowledge of factors that affect longitudinal outcomes can be used to increase the statistical power of studies; either by adjusting e cacy analyses for these factors, or by enriching studies by restricting inclusion to patients that are likely to have a more homogeneous progression.…”

Section: Discussionmentioning

confidence: 99%

Impact of Age at Onset on Symptom Profiles, Treatment Characteristics and Health-Related Quality of Life in Parkinson’s Disease

Odin¹,

Norlin²,

Kellerborg³

et al. 2021

Preprint

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Parkinson’s disease (PD) is typically considered an age-related disease, but the age at disease onset can vary by decades between patients. Aging and aging-associated diseases can affect the movement system independently of PD, and advanced age has previously been proposed to be associated with a more severe PD phenotype with accelerated progression. In this work, we investigated how interactions between PD progression and aging affect a wide range of outcomes related to PD motor and nonmotor symptoms as well as Health Related Quality of Life (HRQoL) and treatment characteristics. This population-based cohort study is based on 1436 PD patients from southern Sweden followed longitudinally for up to approximately 7.5 years from enrollment. Higher age at onset was generally associated with faster progression of motor symptoms, with a notable exception of dyskinesia and other levodopa-associated motor fluctuations that had less severe trajectories for patients with higher age at onset. Mixed results were observed for emergence of non-motor symptoms, while higher age at onset was generally associated with worse HRQoL trajectories. Accounting for these identified age-associated differences in disease progression could positively impact patient management and drug development efforts.

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Advance care planning in Parkinson’s disease: ethical challenges and future directions

Cited by 40 publications

References 48 publications

Best Practices in the Clinical Management of Progressive Supranuclear Palsy and Corticobasal Syndrome: A Consensus Statement of the CurePSP Centers of Care

Best Practices in the Clinical Management of Progressive Supranuclear Palsy and Corticobasal Syndrome: A Consensus Statement of the CurePSP Centers of Care

Social Media Perceptions of Legacy-Making: A Qualitative Analysis

Impact of Age at Onset on Symptom Profiles, Treatment Characteristics and Health-Related Quality of Life in Parkinson’s Disease

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