Implementing physiotherapy guidelines in Huntington’s disease
Research, Studies
A valuable reading resources that focus on guidelines in relation to Huntington's disease.
General
European Huntington's Disease Network (EHDN) Frontiers: International guidelines for the treatment of Huntington's disease
Oosterloo M, Touzé A, Byrne LM, et al. (2024) Clinical review of juvenile Huntington's disease. Journal of Huntington's Disease. 13(2):123–135. doi:10.3233/JHD-231523.
Stoker, T. B., Mason, S. L., Greenland, J. C., Holden, S. et al (2022). Huntington's disease: diagnosis and management. Practical Neurology, 22(1), 32–41.
Overview Optimum clinical pathway for adults: Movement Disorders National Neurosciences Advisory Group (NNAG)
NHS long-term plan v1.2 August 2019 UK Strategy for Rare Disease Department of Health
Neurology: Suspected neurological conditions NICE
Symptom management
Symptom Management: Nutritional support for adults: oral nutrition support, enteral tube feeding and parenteral nutrition NICE
Urinary incontinence in neurological disease: assessment and management NICE
Carers
Carers: Support for adult carers NICE
End of life care
End of life care: End of life care for adults NICE
End of life care for adults: Service delivery NICE
Mental capacity and mental health
Decision Making, mental capacity and social work: Social work with adults experiencing complex needs NICE
Anderson, K. E., van Duijn, E., Craufurd, D, et al. (2018). Clinical management of neuropsychiatric symptoms of Huntington disease: Expert-based consensus guidelines on agitation, anxiety, apathy, psychosis and sleep disorders. Journal of Huntington's Disease, 7(4), 355–366.
British Association of Social Workers - A practice guide
Decision-making and mental capacity NICE
Mental Capacity Act: Code of conduct office of the Public Guardian
Mental Health: Depression in adults with a chronic physical health problem: recognition and management NICE
Psychosis and schizophrenia in adults: prevention and management NICE
Development of physiotherapy guidelines
Physiotherapy guidelines for the management of Huntington’s disease were published in 2020 (Quinn et al. 2020) yet it is not known if physiotherapists in the United Kingdom (UK) are aware of and/or are implementing the guidelines in practice. A small global survey of physiotherapists (Jones et al. 2022) identified that a physiotherapist’s expertise in Huntington's disease was one of a number of facilitators to implementing guidelines in practice and therefore creative approaches are needed to support physiotherapists to develop expertise in this rare condition. A Knowledge to Action study design will be used to develop activities and/or resources that will support physiotherapists in the UK in implementing the Huntington's disease guidelines.
