Adult North Star Network (ANSN): consensus document for therapists working with adults with Duchenne Muscular Dystrophy (DMD) – therapy guidelines

Therapeutic interventions are an integral part of the holistic care of adults of people with DMD. Individualised symptom management process to improve function and increase participation is vital for maintaining and improving quality of life. Adults with DMD require a MDT approach including regular assessments completed by physiotherapists (neuromuscular, respiratory and rehabilitation), occupational therapists, speech and language therapists and dietitians. All patients require regular monitoring of respiratory function and cough strength to anticipate deterioration and to prevent hospital admissions. Joint ROM should be monitored to preserve range, prevent contractures and ensure good positioning to providerelief from pain and stiffness. Postural management should be completed by an MDT with 24-hours approach involving the assessment and management of all positions used in everyday life. Customised wheelchairs should be prescribed to provide support while allowing functional mobility. As the condition progresses, needs may vary, and regular reviews are necessary to maintain independence. Considering a progressive state of enforced immobility because of DMD, individuals should be encouraged to break sedentary behaviour where possible. Physically active leisure pursuits can provide opportunities to socialise while engaging in physical activity. OT assessment should be an integral part of routine MDT reviews. OT can facilitate engagement in age appropriate and meaningful roles, activities, and occupations. Assistive Devices and Technologies (ADT) may also be recommended to maintain or improve function and independence to enhance overall well-being. Swallowing and nutritional status should be assessed regularly to maintain good nutrition and facilitate informed decisions.