Detail
Article
Online article
FT
Medvik - BMC
  • Something wrong with this record ?

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

. 2023 ; 18 (1) : 19. [pub] 20230130

Language English Country England, Great Britain

Document type Journal Article, Research Support, Non-U.S. Gov't

Persistent link   https://www.medvik.cz/link/bmc23004489

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.

References provided by Crossref.org

000      
00000naa a2200000 a 4500
001      
bmc23004489
003      
CZ-PrNML
005      
20230425141437.0
007      
ta
008      
230418s2023 enk f 000 0|eng||
009      
AR
024    7_
$a 10.1186/s13023-023-02622-8 $2 doi
035    __
$a (PubMed)36717864
040    __
$a ABA008 $b cze $d ABA008 $e AACR2
041    0_
$a eng
044    __
$a enk
100    1_
$a Mühlbӓck, Alzbeta $u Department of Neurology, University Ulm, Ulm, Germany $u Department of Neuropsychiatry, Huntington Center South, Kbo-Isar-Amper-Klinikum Taufkirchen, Taufkirchen, Germany $u Department of Neurology and Center of Clinical Neuroscience, 1st Faculty of Medicine, Charles University and General University Hospital, Prague, Czech Republic
245    10
$a What we don't need to prove but need to do in multidisciplinary treatment and care in Huntington's disease: a position paper / $c 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
520    9_
$a 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.
650    _2
$a lidé $7 D006801
650    12
$a Huntingtonova nemoc $x terapie $7 D006816
650    _2
$a poskytování zdravotní péče $7 D003695
650    _2
$a konsensus $7 D032921
650    _2
$a zdravotnický personál $7 D006282
655    _2
$a časopisecké články $7 D016428
655    _2
$a práce podpořená grantem $7 D013485
700    1_
$a van Walsem, Marleen $u Department of Neurorehabilitation, Oslo University Hospital, Oslo, Norway $u Department of Neurology, Oslo University, Oslo, Norway
700    1_
$a Nance, Martha $u Struthers Parkinson's Center, Golden Valley, Minneapolis, MN, USA $u Hennepin County Medical Center, Minneapolis, MN, USA
700    1_
$a Arnesen, Astri $u European Huntington Association (EHA), Moerbeke Waas, Belgium
700    1_
$a Page, Kirsty $u Inspire Neurocare, Worcester, UK
700    1_
$a Fisher, Alexandra $u West Midlands Huntington's Disease Team, Neuropsychiatry, The Barberry, Birmingham, UK
700    1_
$a van Kampen, Manon $u Huntington Expert Centre Atlant, Apeldoorn, The Netherlands
700    1_
$a Nuzzi, Angela $u Rehabilitation Unit DAS, ASL Bari, Bari, Italy
700    1_
$a Limpert, Roy $u Department of Neuropsychiatry, Huntington Center South, Kbo-Isar-Amper-Klinikum Taufkirchen, Taufkirchen, Germany
700    1_
$a Fossmo, Hanne Ludt $u Unit for Congenital and Hereditary Neuromuscular Disorders (EMAN), Department of Neurology, Oslo University Hospital, Oslo, Norway $u Vikersund Rehabilitation Centre, Vikersund, Norway
700    1_
$a Cruickshank, Travis $u Centre for Precision Health, Edith Cowan University, Perth, Australia
700    1_
$a Veenhuizen, Ruth $u Huntington Expert Centre Atlant, Apeldoorn, The Netherlands. r.veenhuizen@atlant.nl $u Department of Medicine for Older People, Amsterdam UMC, Location Vrije Universiteit Amsterdam, Amsterdam, The Netherlands. r.veenhuizen@atlant.nl $u Amsterdam Public Health, Aging and Later Life, Amsterdam, The Netherlands. r.veenhuizen@atlant.nl $1 https://orcid.org/0000000154703033
710    2_
$a Multidisciplinary Care and Treatment Working Group of the European Huntington’s Disease Network
773    0_
$w MED00165365 $t Orphanet journal of rare diseases $x 1750-1172 $g Roč. 18, č. 1 (2023), s. 19
856    41
$u https://pubmed.ncbi.nlm.nih.gov/36717864 $y Pubmed
910    __
$a ABA008 $b sig $c sign $y p $z 0
990    __
$a 20230418 $b ABA008
991    __
$a 20230425141434 $b ABA008
999    __
$a ok $b bmc $g 1924910 $s 1190698
BAS    __
$a 3
BAS    __
$a PreBMC-MEDLINE
BMC    __
$a 2023 $b 18 $c 1 $d 19 $e 20230130 $i 1750-1172 $m Orphanet journal of rare diseases $n Orphanet J Rare Dis $x MED00165365
LZP    __
$a Pubmed-20230418

Find record

Citation metrics

Archiving options