Lifetime neuropsychiatric symptoms in Huntington's disease: Implications for psychiatric nursing

Gibson, Jessie S.; Isaacs, David A.; Claassen, Daniel O.; Stovall, Jeffrey

doi:10.1016/j.apnu.2021.03.006

Cited by 5 publications

(2 citation statements)

References 40 publications

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“…This expertise considers the co-occurrence of these manifestations with other disease symptoms. Quigley [ 22 ] provides additional considerations for psychiatrists who may be working with Juvenile HD, and Gibson et al [ 23 ] give guidance on these symptoms to psychiatric nursing colleagues working in the community.…”

Section: Clinical Managementmentioning

confidence: 99%

What we don't need to prove but need to do in multidisciplinary treatment and care in Huntington's disease: a position paper

Mühlbäck¹,

Walsem²,

Nance³

et al. 2023

Orphanet J Rare Dis

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Background Huntington’s disease is a complex neurodegenerative hereditary disease with symptoms in all domains of a person’s functioning. It begins after a healthy start in life and leads through the relentless progression over many years to complete care dependency and finally death. To date, the disease is incurable. The long progressive complex nature of the disease demands multiple disciplines for treatment and care of patient and family. These health care providers need inter- and multidisciplinary collaboration to persevere and be efficacious in this devastating disease trajectory. Discussion The position paper outlines current knowledge and experience alongside the experience and consensus of a recognised group of HD multidisciplinary experts. Additionally the patient’s voice is clear and calls for health care providers with a holistic view on patient and family. Building long-term trust is a cornerstone of the network around the patient. This paper describes a managed care network comprising all the needed professionals and services. In the health care system, the role of a central coordinator or case manager is of key importance but lacks an appropriate guideline. Other disciplines currently without guidelines are general practitioners, nurses, psychologists, and social workers. Guidelines for neurologists, psychiatrists, geneticists, occupational therapists, speech and language therapists, physiotherapists, dieticians, and dentists are being discussed. Apart from all these profession-specific guidelines, distinctive inter- and multidisciplinary collaboration requirements must be met. Conclusions and recommendations The complex nature of Huntington's disease demands multidisciplinary treatment and care endorsed by international regulations and the lay association. Available guidelines as reviewed in this paper should be used, made available by a central body, and updated every 3–5 years. Time needs to be invested in developing missing guidelines but the lack of this ‘proof’ should not prevent the ‘doing’ of good care.

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Section: Clinical Managementmentioning

confidence: 99%

What we don't need to prove but need to do in multidisciplinary treatment and care in Huntington's disease: a position paper

Mühlbäck¹,

Walsem²,

Nance³

et al. 2023

Orphanet J Rare Dis

View full text Add to dashboard Cite

show abstract

“…Evidence has shown that the cognitive, emotional, and behavioural difficulties experienced by pwHD may precede the onset of motor difficulties by many years [ 4 , 7 , 8 , 9 ]. Difficulties associated with HD can include emotional lability, irritability, anxious or obsessive-compulsive thoughts, low mood, demotivation and apathy and, less commonly, psychosis [ 10 , 11 , 12 , 13 ].…”

Section: Introductionmentioning

confidence: 99%

Using a Clinical Formulation to Understand Psychological Distress in People Affected by Huntington’s Disease: A Descriptive, Evidence-Based Model

Dale

Wood

Zarotti

et al. 2022

JPM

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Huntington’s disease (HD) is an inherited, life-limiting neurodegenerative condition. People with HD experience changes in cognitive, motor and emotional functioning, and can also, mainly at later stages, exhibit behaviours that professionals and carers might find distressing such as hitting others, throwing objects, swearing or making inappropriate comments. While clinical formulation (an individualised approach used by mental health professionals to describe an individual’s difficulties) is a helpful tool to conceptualise patients’ wellbeing, a specific formulation framework has not yet been developed for HD. However, evidence has shown that formulation can help guide clinical interventions and increase consistency of approach across multi-disciplinary teams, refine risk management, and improve staff or carers’ empathic skills and understanding of complex presentations. As a consequence, this paper proposes a new clinical formulation model for understanding distress among people with HD, based on a biopsychosocial framework. More specifically, this includes key elements centring on an individual’s past experience and personal narratives, as well as anticipatory cognitions and emotions about the future. In-depth discussions regarding the components of the model and their importance in HD formulations are included, and a fictional yet representative case example is presented to illustrate their application within the context of personalised care.

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Huntington study group’s neuropsychology working group position on best practice recommendations for the clinical neuropsychological evaluation of patients with Huntington disease

Considine,

Rossetti,

Anderson

et al. 2023

The Clinical Neuropsychologist

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Lifetime neuropsychiatric symptoms in Huntington's disease: Implications for psychiatric nursing

Cited by 5 publications

References 40 publications

What we don't need to prove but need to do in multidisciplinary treatment and care in Huntington's disease: a position paper

What we don't need to prove but need to do in multidisciplinary treatment and care in Huntington's disease: a position paper

Using a Clinical Formulation to Understand Psychological Distress in People Affected by Huntington’s Disease: A Descriptive, Evidence-Based Model

Huntington study group’s neuropsychology working group position on best practice recommendations for the clinical neuropsychological evaluation of patients with Huntington disease

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