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Rachael E C Schutz, Claire J Creutzfeldt
No abstract text is available yet for this article.
February 15, 2018: Journal of the Neurological Sciences
Maisha T Robinson, Robert G Holloway
Palliative medicine is a specialty that focuses on improving the quality of life for patients with serious or advanced medical conditions, and it is appropriate at any stage of disease, including at the time of diagnosis. Neurologic conditions tend to have high symptom burdens, variable disease courses, and poor prognoses that affect not only patients but also their families and caregivers. Patients with a variety of neurologic conditions such as Parkinson disease, dementia, amyotrophic lateral sclerosis, brain tumors, stroke, and acute neurologic illnesses have substantial unmet needs that can be addressed through a combination of primary and specialty palliative care...
October 2017: Mayo Clinic Proceedings
Joseph J Fins
Decisions about end-of-life care and participation in clinical research for patients with disorders of consciousness begin with diagnostic discernment. Accurately distinguishing between brain states clarifies clinicians' ethical obligations and responsibilities. Central to this effort is the obligation to provide neuropalliative care for patients in the minimally conscious state who can perceive pain and to restore functional communication through neuroprosthetics, drugs, and rehabilitation to patients with intact but underactivated neural networks...
December 1, 2016: AMA Journal of Ethics
Roop Gursahani
End-of-life care is an integral part of neurology practice, and neuropalliative medicine is an emerging neurology subspeciality. This begins with serious illness communication as a protocol-based process that depends on an evaluation of patient autonomy and accurate prognostication. Communication needs vary between chronic, life-limiting neurologic illnesses and acute brain injury. In an ideal situation, the patient's wishes are spelled out in advance care plans and living wills, and surrogates have only limited choices for implementation...
October 2016: Annals of Indian Academy of Neurology
Claire J Creutzfeldt, Maisha T Robinson, Robert G Holloway
PURPOSE OF REVIEW: To present current knowledge and recommendations regarding communication tasks and practice approaches for neurologists as they practice primary palliative care, including discussing serious news, managing symptoms, aligning treatment with patient preferences, introducing hospice/terminal care, and using the multiprofessional approach. RECENT FINDINGS: Neurologists receive little formal palliative care training yet often need to discuss prognosis in serious illness, manage intractable symptoms in chronic progressive disease, and alleviate suffering for patients and their families...
February 2016: Neurology. Clinical Practice
Maisha T Robinson, Kevin M Barrett
No abstract text is available yet for this article.
May 27, 2014: Neurology
Anne Fenech
This article describes a single-case design study and uses an occupational science focus to explore the effects of 'Aquability' as perceived by participants with neuropalliative conditions. Data collection tools include the Individual Child Engagement Record and the adapted Leisure Satisfaction Scale--short form by 14 participants (who had Barthel scores averaging 7/100). The time-sampled observations of engagement showed a significant difference between the scores for the control condition and the 'Aquability' sessions...
September 2012: Scandinavian Journal of Caring Sciences
Fary Khan, Bhasker Amatya, Lynne Turner-Stokes
Multiple sclerosis (MS) is an autoimmune inflammatory demyelinating disease of the central nervous system and a major cause of chronic neurological disability in young adults. Primary progressive MS (PPMS) constitutes about 10% of cases, and is characterized by a steady decline in function with no acute attacks. The rate of deterioration from disease onset is more rapid than relapsing remitting and secondary progressive MS types. Multiple system involvement at onset and rapid early progression have a worse prognosis...
2011: Neurology Research International
Louisa Ng, Paul Talman, Fary Khan
Motor neurone disease (MND) places considerable burden upon patients and caregivers. This is the first study, which describes the disability profile and healthcare needs for persons with MND (pwMND) in an Australian sample from the perspective of the patients and caregivers to identify current gaps in the knowledge and service provision. A prospective cross-sectional community survey of pwMND (n=44) and their caregivers (n=37) was conducted, to determine symptoms and problems affecting daily living. Standardized assessments were carried out to determine the disease severity for stratification purposes, service needs and gaps...
June 2011: International Journal of Rehabilitation Research. Revue Internationale de Recherches de Réadaptation
Anne Fenech, Mark Baker
This case report describes the leisure lifestyle of two individuals with neuropalliative conditions who expressed themselves satisfied with their use of leisure time and whose leisure occupations were based around sensory stimulation to each of the five senses, proprioception and vestibular stimulation in turn. It evaluates the concept of leisure as a means of giving a meaning to life and therefore increasing quality of life, suggests greater use of the existing sensory diet framework in the domain of neuropalliative conditions and proposes a direction for future research in order to provide casual leisure opportunities for individuals with severe cognitive dysfunction in order to improve their quality of life...
2008: NeuroRehabilitation
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