News
New care map on Huntington's disease
A care map on Huntington's disease is now available on the Map of Medicine. Based on strong secondary evidence and input from a multidisciplinary specialist group, it offers a comprehensive illustration of best practice.
In order to provide a central reference point for those involved in managing the disease, information from the following resources has been incorporated:
- guidance from the Department of Health and the European Federation of Neurological Societies
- practice-based knowledge from consultants in neurology, clinical genetics, and specialist nursing
- quality-assessed secondary literature
Through demonstrating best practice, the aim of the care map is two-fold: to facilitate diagnosis and management of a complex, currently incurable, disease, as well as help ensure access for all patients to co-ordinated services and consistent, high-quality care.
Professor Sarah Tabrizi, honorary consultant neurologist at UCL Institute of Neurology, described the need for an integrated care pathway for the condition, commenting: "I am very pleased that the Huntington's disease care map has now been published on the Map of Medicine. In terms of the value of care pathways in the NHS, these are critical in helping GPs, clinicians and allied medical professionals to care for patients with Huntington's disease. Huntington's disease is relatively rare compared to other dementias but it requires expert and specialist input for patients to be managed optimally.
"The care map for Huntington's disease reflects the 2011 current clinical practice and evidence-based medicine and has input from some of the top clinical experts in the country".
As well as covering genetic testing, supportive management strategies, and symptom control in people with the condition, the comprehensive scope of the care map also encompasses the management of asymptomatic people at risk. Consideration of this group is particularly important – while there are approximately 9,000 known cases of Huntington's disease in the UK, twice as many people may have inherited the condition but are asymptomatic.
The care map has a strong focus on providing an integrated care plan tailored to each patient, and incorporates resources for patients and carers, including information on the Huntington's Disease Association.
As the care map is also available to patients and carers through the NHS Choices website, those affected by Huntington's disease can view treatment options and participate in informed discussions with the healthcare team supporting them.