Neuromuscular management¹

KEY ROLE: to optimise the maintenance of muscle strength and function, lead the multidisciplinary clinic, and act as first point of contact to families

A neuromuscular specialist:

• Leads, administers and coordinates the DMD multidisciplinary clinic
• Characterises the patient’s disease trajectory and defines the treatment plan 
• Provides patient and family support and education

Initiates and manages use of pharmaceutical interventions

Rehabilitation management¹

KEY ROLE: to provide physical, occupational, and speech and language therapy

Professionals including physical therapists, occupational therapists, speech-language pathologists, orthotists and medical equipment providers:

• Help prevent or manage muscle/joint contracture, deformity, falls and fractures 
• Help prevent or manage pain
• Promote exercise and activity
• Provide orthoses, equipment and learning support

Cardiac management¹

KEY ROLE: to evaluate cardiac function and manage cardiac complications

A cardiologist:

• Monitors cardiac function and conducts cardiac assessments (in both DMD patients and female carriers)
• Initiates and manages cardiac pharmacological therapies
• Uses heart failure interventions with deterioration of function

Respiratory management^1,6

KEY ROLE: to evaluate respiratory function and manage respiratory complications

Professionals including physicians and respiratory or physical therapists:

• Monitor respiratory muscle function 
• Manage lung volume recruitment, assisted coughing, nocturnally assisted ventilation and subsequent daytime ventilation
• Manage immunisation schedules

Orthopaedic & surgical management^1,6

KEY ROLE: to manage joint contractures and scoliosis

Professionals including physical therapists, occupational therapists, rehabilitation physicians, neurologists, orthopaedic physicians and social workers:

• Provide surgical interventions to manage contractures and scoliosis
• Provide physical therapy before and after surgery

Bone health management^1,6

KEY ROLE: to diagnose and treat osteoporosis

A bone heath expert:

• Identifies early indications of bone fragility
• Initiates and manages intravenous bisphosphonate therapy to treat osteoporosis

Psychosocial management^1,3

KEY ROLE: to manage learning, emotional and behavioural disorders

Professionals including mental health clinicians, occupational therapists and physical therapists:

• Assess mental health and educational needs
• Provide neuropsychological evaluation/interventions for learning, emotional and behavioural problems

Specialist nursing²

KEY ROLE: to provide practical and emotional support for families affected by DMD

Specialist nurses:

• Provide advice and information to patients and families about DMD
• Support a patient’s physical and emotional wellbeing

Genetic counselling^4,5

KEY ROLE: to manage genetic testing and explain what the results mean for families

A genetic counsellor:

• Provides education about DMD
• Coordinates and explains genetic testing
• Provides emotional counselling
• Discusses family planning options

Gastrointestinal and nutritional management¹

KEY ROLE: to promote a healthy diet and weight, and manage any gastrointestinal problems

A dietitian nutritionist:

• Monitors growth and weight to prevent undernutrition, malnutrition or obesity
• Promotes a healthy, balanced diet
• A gastroenterologist:Manages constipation, gastroesophageal reflux, gastrointestinal motility concerns and gastrostomy tube placement

Regional care services^2,7

KEY ROLE: to provide practical and emotional support for families affected by DMD

Regional neuromuscular care advisors:

• Help support patients in school and work environment
• Assist in planning for major housing adaptations and equipment resources
• Support the transition from child to adult medical care
• Advise patients on disability benefit assessments
• Educate other healthcare professionals about DMD

Endocrine management¹

KEY ROLE: to manage endocrine complications of DMD and initiate hormone replacement therapy

An endocrinologist:

• Manages hormone deficiencies and hormone replacement therapy in the case of impaired growth or delayed puberty onset
• Educates families on the risks of adrenal crisis following glucocorticoid termination