TY - JOUR
T1 - What we don't need to prove but need to do in multidisciplinary treatment and care in Huntington's disease
T2 - a position paper
AU - M?hlb?ck, Alzbeta
AU - van Walsem, Marleen
AU - Nance, Martha
AU - Arnesen, Astri
AU - Page, Kirsty
AU - Fisher, Alexandra
AU - van Kampen, Manon
AU - Nuzzi, Angela
AU - Limpert, Roy
AU - Fossmo, Hanne Ludt
AU - Cruickshank, Travis
AU - the Multidisciplinary Care and Treatment Working Group of the European Huntington?s Disease Network
AU - Veenhuizen, Ruth
N1 - Funding Information: We wish to acknowledge the support of the European Huntington Disease Network (EHDN). This position paper has been written on behalf of the Multidisciplinary reatment and Care Working Group (MTC WG) of the European Huntington’s Disease Network. This working group is composed of representatives of the different professional groups involved in the therapy and care of HD patients and families, as follows: Ruth Veenhuizen (physician in a nursing home, chair of the MTC WG), Alzbeta Mühlbäck (psychiatrist, genetic counselling), Marleen van Walsem, (clinical neuropsychologist, co-chair of the MTC WG), Martha Nance (neurologist), Astri Arnesen (patient representative, president of EHA, co chair of the MTC WG), Kirsty Page (occupational therapist), Alexandra Fisher (occupational therapist), Manon van Kampen,(occupational therapist), Angela Nuzzi, (speech therapist and psychologist), Roy Limpert (advanced practice nursing), Hanne Ludt Fossmo (Physiotherapist), Travis Cruickshank (exercise scientist). Funding Information: We wish to acknowledge the support of the European Huntington Disease Network (EHDN). Publisher Copyright: © 2023, The Author(s).
PY - 2023/12/1
Y1 - 2023/12/1
N2 - 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.
AB - 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.
KW - Care
KW - Case manager
KW - Guidelines
KW - Huntington’s disease
KW - Interdisciplinary team
KW - Managed care network
KW - Multidisciplinary treatment
KW - Position paper
UR - http://www.scopus.com/inward/record.url?scp=85147013845&partnerID=8YFLogxK
U2 - https://doi.org/10.1186/s13023-023-02622-8
DO - https://doi.org/10.1186/s13023-023-02622-8
M3 - Article
C2 - 36717864
SN - 1750-1172
VL - 18
JO - Orphanet Journal of Rare Diseases
JF - Orphanet Journal of Rare Diseases
IS - 1
M1 - 19
ER -