What are the current guidelines for monitoring and managing the progression of Huntington's Disease in primary care?

Current guidelines for monitoring and managing the progression of Huntington's disease in primary care:

There are no specific UK primary care guidelines for Huntington's disease detailed in the provided context. However, by analogy with other progressive neurodegenerative diseases such as Parkinson's disease and motor neurone disease, the following principles can be applied:

• Specialist involvement: People with Huntington's disease should be under the care of specialists in movement disorders or neurology, with multidisciplinary team input including nursing, physiotherapy, occupational therapy, and mental health support as needed.
• Regular review: Regular comprehensive reviews should be arranged to monitor disease progression, medication effects, and emerging complications, typically every 6–12 months or as clinically indicated.
• Symptom management: Management should address both motor and non-motor symptoms, including psychiatric and cognitive issues, with appropriate referrals to specialist services.
• Medication adherence and review: Primary care should support medication adherence, monitor for adverse effects, and liaise with specialists regarding treatment adjustments.
• Information and support: Patients and carers should be provided with information about the disease, sources of support, and advice on planning for future care needs.
• Carer support: Assess and support carers, including offering respite care options.
• Advance care planning: Discussions about future care preferences and end-of-life care should be initiated early and revisited regularly.

Primary care's role includes coordination of care, monitoring general health, supporting medication adherence, and facilitating access to specialist and community services. Referral to specialist services should be prompt if there is diagnostic uncertainty or rapid progression.

Because Huntington's disease shares features with other neurodegenerative conditions, these principles are extrapolated from NICE and UK guidelines on Parkinson's disease and motor neurone disease management ¹,⁴.