Dr Kola Tytler MBBS CertHE MBA MRCGPClinical Lead • iatroX
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, based on the approach to 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 experienced in movement disorders or neurodegenerative diseases to ensure accurate diagnosis and management.
- Regular comprehensive review: Regular monitoring of symptoms and disease progression is essential, ideally every 6–12 months, to assess motor, cognitive, and psychiatric symptoms and to reconsider diagnosis if atypical features develop.
- Multidisciplinary team approach: Management should involve a multidisciplinary team including neurologists, specialist nurses, physiotherapists, occupational therapists, speech and language therapists, dietitians, and mental health professionals to address the complex motor and non-motor symptoms.
- Support and information: Primary care should provide information and support to patients and their families, including advice on sources of support and carer assessments.
- Medication review and adherence: Regular review of medications, adherence, and side effects is important, with liaison to specialists as needed.
- Advance care planning: Discussions about future care and end-of-life planning should be initiated early and revisited regularly.
- Referral and urgent review: Any rapid deterioration or atypical features should prompt urgent specialist review.
While these principles are extrapolated from guidelines on Parkinson's disease and motor neurone disease management in the UK, Huntington's disease care similarly requires specialist input and a holistic, multidisciplinary approach. Primary care plays a key role in coordination, monitoring, and supporting patients and carers throughout the disease course.