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What we don't need to prove but need to do in multidisciplinary treatment and care in Huntington's disease: a position paper
A. Mühlbӓck, M. van Walsem, M. Nance, A. Arnesen, K. Page, A. Fisher, M. van Kampen, A. Nuzzi, R. Limpert, HL. Fossmo, T. Cruickshank, R. Veenhuizen, Multidisciplinary Care and Treatment Working Group of the European Huntington’s Disease Network
Language English Country England, Great Britain
Document type Journal Article, Research Support, Non-U.S. Gov't
NLK
BioMedCentral
from 2006-12-01
BioMedCentral Open Access
from 2006
Directory of Open Access Journals
from 2006
Free Medical Journals
from 2006
PubMed Central
from 2006
Europe PubMed Central
from 2006
ProQuest Central
from 2009-01-01
Open Access Digital Library
from 2006-01-01
Open Access Digital Library
from 2006-01-01
Medline Complete (EBSCOhost)
from 2006-01-01
Health & Medicine (ProQuest)
from 2009-01-01
ROAD: Directory of Open Access Scholarly Resources
from 2006
Springer Nature OA/Free Journals
from 2006-12-01
- MeSH
- Huntington Disease * therapy MeSH
- Consensus MeSH
- Humans MeSH
- Delivery of Health Care MeSH
- Health Personnel MeSH
- Check Tag
- Humans MeSH
- Publication type
- Journal Article MeSH
- Research Support, Non-U.S. Gov't MeSH
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.
Amsterdam Public Health Aging and Later Life Amsterdam The Netherlands
Centre for Precision Health Edith Cowan University Perth Australia
Department of Neurology Oslo University Oslo Norway
Department of Neurology University Ulm Ulm Germany
Department of Neurorehabilitation Oslo University Hospital Oslo Norway
European Huntington Association Moerbeke Waas Belgium
Hennepin County Medical Center Minneapolis MN USA
Huntington Expert Centre Atlant Apeldoorn The Netherlands
Inspire Neurocare Worcester UK
Rehabilitation Unit DAS ASL Bari Bari Italy
Struthers Parkinson's Center Golden Valley Minneapolis MN USA
Vikersund Rehabilitation Centre Vikersund Norway
West Midlands Huntington's Disease Team Neuropsychiatry The Barberry Birmingham UK
References provided by Crossref.org
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