Palliative Care for Patients with Huntington's Disease #201

Marks, Sean; Hung, Serena; Rosielle, Drew A.

doi:10.1089/jpm.2011.9696

Cited by 3 publications

(12 citation statements)

References 9 publications

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“…In general, it is advised to be aware of patients’ unawareness of deficits [ 21 ]. Using short sentences and questions in communication and waiting for acknowledgment or response is advised [ 21 , 23 ]. It is recommended to give verbal and visual cues to aid retrieval [ 21 , 22 , 25 ], to present no more than two choices instead of open-ended questions, to try to distract in case of perseveration, and give a positive response to repeated demands [ 9 , 22 , 25 ].…”

Section: Resultsmentioning

confidence: 99%

“…Thirteen articles, including five surveys [ 32 – 36 ], one cross-sectional study [ 13 ], one case report [ 37 ], and six narrative reviews [ 10 , 22 , 23 , 25 , 26 , 38 ], describe the importance of involving family caregivers in palliative care. Attention to family members during palliative care may improve the quality of life and reduce psychological distress [ 10 , 13 , 25 , 38 ].…”

Section: Resultsmentioning

confidence: 99%

“…Attention to family members during palliative care may improve the quality of life and reduce psychological distress [ 10 , 13 , 25 , 38 ]. The risk of having inherited the HD gene and developing the disease in the future are stressors experienced by offspring in families with HD [ 23 , 33 , 34 , 36 ]. The burden of the chronic, progressively neurodegenerative disorders may cause caregiver burnout and depression [ 22 , 26 , 33 , 34 , 38 ], and disturbed family relationships and social isolation in HD families are described [ 10 , 25 , 26 , 32 – 35 , 37 , 38 ].…”

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

Palliative care in advanced Huntington’s disease: a scoping review

et al. 2023

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Background As Huntington’s disease (HD) is a progressive disease for which there is no cure yet, patients in the advanced stage of HD may benefit from palliative care. Objective To review the literature focusing on palliative care in advanced stage HD, and the level of evidence. Methods Publications between 1993 and October 29th, 2021 from 8 databases (Embase, Web of Science, Cochrane, Emcare, PsycINFO, Academic Search Premier, PMC PubMed Central and Pubmed) were included. The literature was deductively classified based on topics that are part of the definition of palliative care, or as care-related topics that emerged from the literature. Levels of evidence I (high) – V (low) were determined as defined by the Joanna Briggs Institute. Results Our search resulted in 333 articles, 38 of which were included. The literature covered four domains of palliative care: physical care, psychological care, spiritual care, and social care. Four other topics in the literature were: advance care planning, end-of-life needs assessments, pediatric HD care, and need for health care services. Most literature was underpinned by a low level of evidence, except for the topics on social care (Level III-V), advance care planning (Level II-V) and end-of-life needs assessments (Level II-III). Conclusions To deliver adequate palliative care in advanced HD, both general and HD-specific symptoms and problems need to be addressed. As the level of evidence in existing literature is low, further research is essential to improve palliative care and to meet patient’s wishes and needs.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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Palliative care in advanced Huntington’s disease: a scoping review

et al. 2023

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“…17,24,25 The average age of onset for HD is 25 years and the average age of death is 57 years; there are no curative phases or treatments to slow the progression of the disease and extend life. 26 Therefore, individuals often require assistance for approximately 20 or more years. In prodromal stages, adult caregivers may not discuss the illness with employers, family, friends, and health care providers, to avoid the stigma associated with living with a rare disease.…”

Section: A Lifespan Framework Of Family Caregivingmentioning

confidence: 99%

The Spectrum of Caregiving in Palliative Care for Serious, Advanced, Rare Diseases: Key Issues and Research Directions

AdamsLynn

MillerJeri

GradyPatricia

2016

Journal of Palliative Medicine

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Rare diseases are often life-limiting conditions, the majority of which require constant caregiving needs. The realization of a spectrum of palliative care throughout the trajectory of rare diseases could ensure individualized and caregiver-focused approaches to the care of patients and families. In June 2015, the National Institute of Nursing Research (NINR), the lead institute at the National Institutes of Health for end-of-life research, in conjunction with the National Center for Advancing Translational Sciences, Office of Rare Diseases Research (ORDR) held an interdisciplinary workshop on the unique challenges of caregiving and palliative care in adult and pediatric rare diseases. The panel identified gaps in current knowledge, and afforded suggestions for research opportunities in palliative care science to improve the care of individuals with serious, advanced, rare diseases and their caregivers. This meeting provided an in-depth opportunity to incorporate new concepts into palliative and end-of-life care for individuals with a range of rare diseases and their caregivers. This report presents a summary of the workshop.

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“…Before onset and in the first stage of the disorder, they include neurologist, psychiatrist and geneticist, later physiotherapist, speech and occupational therapists, nursing and other medical specialists according to the multiple and increasing needs of gradually dependent patients. Palliative care and end of life stage management receives increasing attention [Marks et al . 2011].…”

Section: General Managementmentioning

confidence: 99%

Recent advances in the management of choreas

Burgunder

2013

Ther Adv Neurol Disord

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Abstract:The management of patients with chorea, in particular Huntington's disease, is a complex task requiring skills in a number of areas. This paper reviews new knowledge on this topic and places it in the context of established procedures. It is focused on Huntington's disease, since this is the disorder, for which most publications on management have been published in the past few years. Management starts with appropriate diagnosis and differential diagnosis, with the aim of finding disorders with chorea amenable to causative treatment. The place of genetic testing and the importance of genetic counselling is stressed, as well as the importance of precise observation in the course of the disorder to tailor appropriate therapies. Pharmacological treatment is based on poor evidence but to a large extent on expertise from centres devoted to the care of patients with Huntington's disease. It is focused mainly on motor and psychiatric aspects of the phenotype. Nonpharmacological treatment is important and is best offered in a multidisciplinary care setting.

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Palliative Care for Patients with Huntington's Disease #201

Cited by 3 publications

References 9 publications

Palliative care in advanced Huntington’s disease: a scoping review

Palliative care in advanced Huntington’s disease: a scoping review

The Spectrum of Caregiving in Palliative Care for Serious, Advanced, Rare Diseases: Key Issues and Research Directions

Recent advances in the management of choreas

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