The Duchenne muscular dystrophy (DMD) multidisciplinary care team

DMD care can be complex. It requires multiple interventions, including neuromuscular, respiratory, cardiac, orthopaedic, endocrine and rehabilitative. These will evolve over the course of the disease.1

As such, international care guidelines for DMD recommend a coordinated, multidisciplinary approach to care.1

By assembling a group of providers in a multidisciplinary team, the patient can benefit from:1

  • Integrated skills and knowledge from multiple disciplines
  • A coordinated and comprehensive treatment plan

Adapted from Birnkrant 2018 [Part 1] and Muscular Dystrophy UK1,2

Who are the key specialists in the DMD multidisciplinary care team?

muscle

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 management1,6

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 management1,6

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
spine

Bone health management1,6

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 management1,3

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 counselling4,5

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 services2,7

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

Please note that the information in this table is intended to provide an overview only and is not exhaustive information. Please refer to the international care guidelines and any local guidelines for more information.

International care guidelines for Duchenne muscular dystrophy recommend a coordinated, multidisciplinary approach to care.1 Click here to learn more.

1. Bimkrant DJ, et al. Lancet Neurol. 2018:17:251–267 [Part 1].
2. Muscular Dystrophy UK. Care Advisers and Clinical Nurse Specialists. Available at: http://www.musculardysrophyuk.org/get-the-right-care-and-support/people-and-places-to-hekp-you/professionals-and-organisations/careadvisors/ [last accessed November 2020].
3. Bimkrant DJ, et al. Lancet Neurol. 2018:17:445-455 [Part 3].
4. Helderman-van den Enden AT. et al. Clin Genet. 2011:79:236–242.
5. Institute of Medicine (US) Committee on Assessing Genetic Risks; Andrews LB, et al. edtors. Assessing Genetic Risks: Implications for health and Social Policy. Washington (DC): National Academies Press (US): 1994. 4, Issues in Genetic Counselling Available at: https://www.ncbi.nlm.nih.gov/books/NBK236049/ [last accessed November 2020].
6. Bimkrant DJ, et al. Lancet Neurol. 2018:17:347–361 [Part 2].
7. John Walton Muscular Dystrophy Research Centre. Specialist care advisor. Available at: https://newcastle-muscle.org/clinical/attending-a-clinic/care-advisor/ [last accessed November 2020].

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