Palliative care and neurology

Boersma, Isabel; Miyasaki, Janis; Kutner, Jean S.; Kluger, Benzi M.

doi:10.1212/wnl.0000000000000674

Cited by 205 publications

(167 citation statements)

References 54 publications

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“…Compared with patients having many other forms of cancer, patients with malignant brain tumours often have a very poor prognosis and do not live for an extended period after diagnosis 3,[10][11][12] . Their care can be delivered in a hospice, where a comfortable and home-like facility is provided 13 , or alternatively, in the patient's own home.…”

Section: Introductionmentioning

confidence: 99%

The Views of Patients with Brain Cancer about Palliative Care: A Qualitative Study

et al. 2017

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Section: Introductionmentioning

confidence: 99%

The Views of Patients with Brain Cancer about Palliative Care: A Qualitative Study

et al. 2017

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“…Current healthcare policies do not provide support for long-term palliative care [4]. There is also evidence that patients with neurological conditions are less likely than other types of patients, such as patients with cancer, to make advanced directives or receive palliative care at the end of life [65]. Our HD-specific EOL measures can help identify patients who could benefit from palliative care and advance directives decision making, as well as identify when patients are likely to be most receptive to these interventions.…”

Section: Discussionmentioning

confidence: 99%

New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system)

et al. 2016

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Purpose Huntington disease (HD) is an incurable terminal disease. Thus, end of life (EOL) concerns are common in these individuals. A quantitative measure of EOL concerns in HD would enable a better understanding of how these concerns impact health-related quality of life. Therefore, we developed new measures of EOL for use in HD. Methods An EOL item pool of 45 items was field tested in 507 individuals with prodromal or manifest HD. Exploratory and confirmatory factor analyses (EFA and CFA, respectively) were conducted to establish unidimensional item pools. Item response theory (IRT) and differential item functioning analyses were applied to the identified unidimensional item pools to select the final items. Results EFA and CFA supported two separate unidimensional sets of items: Concern with Death and Dying (16 items), and Meaning and Purpose (14 items). IRT and DIF supported the retention of 12 Concern with Death and Dying items and 4 Meaning and Purpose items. IRT data supported the development of both a computer adaptive test (CAT) and a 6-item, static short-form for Concern with Death and Dying. Conclusions The HDQLIFE Concern with Death and Dying CAT and corresponding 6-item short form, and the 4-item calibrated HDQLIFE Meaning and Purpose Scale demonstrate excellent psychometric properties. These new measures have the potential to provide clinically meaningful information about end of life preferences and concerns to clinicians and researchers working with individuals with HD. In addition, these measures may also be relevant and useful for other terminal conditions.

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“…The palliative care approach provides for looking after these aspects as well by involving the relatives and having an accurate and continuous communication and information exchange [24]. The ultimate goal of palliative approach must consist in improving the quality of assistance by reducing hospitalization and emergency admissions [25], hence the achievement of greater appropriateness and efficiency. Palliative care is no longer provided only in hospices and encompasses a comprehensive set of interventions which are practicable in different settings (at home and/or in hospital) [26][27][28].…”

Section: General Features Of Palliative Care In Nervous System Diseasesmentioning

confidence: 99%

“…There is a wide bibliography about this condition, which includes many non-motor symptoms such as depression [25]. A palliative approach that starts at the moment of diagnosis is highly recommended for this disease [30].…”

Section: Amyotrophic Lateral Sclerosismentioning

confidence: 99%

Need for palliative care for neurological diseases

et al. 2016

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The new concept of palliative care supports the idea of palliation as an early approach to patients affected by disabling and life-limiting disease which focuses on the patient's quality of life along the entire course of disease. This model moves beyond the traditional concept of palliation as an approach restricted to the final stage of disease and widens the fields of intervention. There is a growing awareness of the importance of palliative care not only in oncological diseases but also in many other branches of medicine, and it appears particularly evident in the approach to many of the most frequent neurological diseases that are chronic, incurable and autonomy-impairing illnesses. The definition and implementation of palliative goals and procedures in neurology must take into account the specific features of these conditions in terms of the complexity and variability of symptoms, clinical course, disability and prognosis. The realization of an effective palliative approach to neurological diseases requires specific skills and expertise to adapt the concept of palliation to the peculiarities of these diseases; this approach should be realized through the cooperation of different services and the action of a multidisciplinary team in which the neurologist should play a central role to identify and face the patient's needs. In this view, it is paramount for the neurologist to be trained in these issues to promote the integration of palliative care in the care of neurological patients.

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Palliative care and neurology

Cited by 205 publications

References 54 publications

The Views of Patients with Brain Cancer about Palliative Care: A Qualitative Study

The Views of Patients with Brain Cancer about Palliative Care: A Qualitative Study

New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system)

Need for palliative care for neurological diseases

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