How can I support a patient with dystonia in managing their symptoms and improving their quality of life?

To support a patient with dystonia in managing their symptoms and improving their quality of life, start by discussing and agreeing on personal treatment goals with the patient and their family or carers, ensuring these goals are documented as part of a multidisciplinary treatment strategy.

It is important to explain the benefits and risks of treatments, including that some patients may use their dystonia to aid posture or mobility, and treatment might affect this balance.

Identify and address modifiable factors that may exacerbate dystonia, such as bladder problems, constipation, emotional distress, pain, posture issues, pressure sores, environmental changes, and medication side effects.

Review and optimize the patient’s physical management programme regularly.

Refer patients with problematic dystonia (causing functional impairment, pain, or participation difficulties) to a specialist tone or spasticity management service to consider treatment options.

Pharmacological treatments may be considered, but levodopa should not be prescribed except as a therapeutic trial for dopa-responsive dystonia, and enteral anti-dystonic drugs should be tapered gradually to avoid withdrawal symptoms.

Throughout management, engage in shared decision-making and ensure the patient actively participates in their care.