Patient discussions
Communication of the diagnosis and information relating to the condition should be tailored to the needs of the patient and their family. Not all will want detailed information about prognosis straight away. Both verbal and written information about symptoms, management (especially respiratory support), specific treatments, and available support should be provided.
Psychosocial support for the patient and their family throughout the course of the disease is essential. Discussions about and planning for transitions of care from child to adult services should be started in adolescence (around age 12-14 years). The transition plan should be based on the preferences and values of the patient and their family, and be reviewed and updated annually.[30]
Participation in social activities should be encouraged and facilitated where possible. Information should be made available about employment opportunities for adults with muscular dystrophies. Healthcare providers should encourage and facilitate discussions about relationships and sexuality at an appropriate time.[30]
Advance directives and wishes for end-of-life care should be discussed with the patient and family/carers as early as possible (but only when they are ready to do so). An ongoing discussion of advanced care planning should be part of regular follow-up.[10][75]
Patients, their family members, and other care providers are actively involved in all stages of management of DMD.
Ambulatory stage:
Care providers are instructed in how to provide active assisted range of motion to all limbs and stretching to limb contractures for maintenance therapy.
Information about appropriate exercise should be provided, guided by a physiotherapist.[10]
Patients and carers should be educated during the ambulatory stage about respiratory and cardiac complications, to prepare them for future therapies and complications.[29]
Early non-ambulatory stage:
The patient is taught air stacking, and manually and mechanically assisted coughing (MAC). The patient and care providers are made familiar with the oximetry/respiratory muscle aid protocol to help prevent intercurrent upper respiratory tract infections from developing into pneumonia and respiratory failure. At the onset of any respiratory tract infection, in particular at the onset of cough (trigger), the patient is taught to immediately put on an oximeter and use non-invasive ventilation/MAC to prevent pneumonia and respiratory failure.
Patients are also taught the use of assistive technology and adaptive devices to facilitate activities of daily living and participation.
Advice and support for adapting the patient's home and transport for wheelchair use should be provided.[10]
Late non-ambulatory stage:
The patient and carers are taught how to use non-invasive ventilation, initially at night and then for longer periods as increasing respiratory support is needed.[10]
Advice and education about the use of gastrostomy tubes should be provided.[10]
There are a number of support groups that may be helpful in disseminating information about services available in the community and in providing information and psychological support.
Muscular Dystrophy UK Opens in new window
Duchenne Family Support Group Opens in new window
Living with SMA Opens in new window
Muscular Dystrophy Association: Duchenne muscular dystrophy Opens in new window
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