The Parkinson Care Advocate: Integrating Care Delivery

Sokol, Leonard L.; Shapiro, Debbie; Young, Michael J.; Wise, Adina; Hadelsberg, Uri; Kaufman, Yakir; Espay, Alberto J.; Merola, Aristide

doi:10.3389/fneur.2017.00364

Cited by 5 publications

(4 citation statements)

References 32 publications

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“…Referral delays may add unnecessary distress to the individual and loved ones as the condition progresses. 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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“…Another challenge for the widespread diffusion of telemedicine is the cost of technologies, and the difficulty of integrating them into challenging environments such as in the home of elderly patients, communities with low educational status, low-middle income countries, and rural areas with incomplete or absent technology penetration. 105 However, given the significant advantages associated with the use of telehealth, further studies and applications have been advocated by international societies. 106…”

Section: Cost Of Technologies and Their Integration Into Difficult Enmentioning

confidence: 99%

Telemedicine in Neurological Disorders: Opportunities and Challenges

Chirra

Marsili

Wattley

et al. 2019

Telemedicine and e-Health

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118

103

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“…In summary, although physical exercise is inexpensive, its use as a treatment requires a complete change of strategy. Exercise training would be considered the first antiparkinsonian measure, even before (or at least at the same time) than drug therapy is added ( 12 , 38 , 39 ). Changes are not easy to implement, although other medical specialties such as endocrinology have well-designed patient education programs for chronic diseases uch as diabetes.…”

Section: Discussionmentioning

confidence: 99%