Monitoring
Patients should be seen at least every 6 months for assessment of disease progression (including function, strength, and range of movement) and for multidisciplinary rehabilitation assessment.[10][22][31]
Blood pressure and urine glucose levels must be monitored while patients are taking corticosteroids.
Respiratory monitoring
Forced vital capacity (FVC) should be measured at least annually in all patients with DMD.[29][40]
For patients who are non-ambulatory: seated FVC, maximum inspiratory and expiratory pressures, assisted peak cough flow, and blood oxyhaemoglobin saturation by pulse oximetry (SpO₂) should be measured at least every 6 months.[29][40]
Cardiac monitoring
Annual cardiac assessment with ECG and non-invasive imaging up to age 10 years is recommended.[22][29] The preferred imaging modality is cardiovascular magnetic resonance imaging (MRI). Younger patients may not be able to co-operate with this procedure, so echocardiography is recommended until at least age 6-7 years.[29]
After age 10 years, annual assessment should be continued for asymptomatic patients, with frequency increased when symptoms of heart failure or imaging abnormalities occur.[22][29][31]
Growth and puberty
Standing height of ambulatory patients and non-standing height of all patients should be measured every 6 months until the patient has attained their final height. Measures that may be used to assess non-standing height include arm span, ulnar length, tibia length, knee height, and segmentally measured recumbent length.[10]
Delayed puberty is a common complication of corticosteroid therapy. Pubertal status should be assessed every 6 months starting by age 9 years.[10]
Nutrition, swallowing, and gastrointestinal symptoms
Nutritional assessment by a dietitian should take place at every clinic visit (every 6 months) starting at diagnosis. Serum concentrations of 25-hydroxyvitamin D and calcium intake should be assessed annually.[10]
The patient and family should also be asked about problems with swallowing and gastrointestinal problems (e.g., constipation, gastroparesis, gastro-oesophageal reflux) at every clinic visit. Any patient with symptoms of dysphagia should be referred for a swallowing assessment.[10]
Bone and orthopaedic health
Bone health should be monitored using lateral spine x-rays: every 1-2 years for patients on corticosteroids, and every 2-3 years for other patients.[22][29]
Measurement of bone mineral density may be useful to determine the overall trajectory of bone health, but should not be used as the primary monitoring tool.[29]
Monitoring for scoliosis by visual assessment should be done at least annually for ambulatory patients and every 6 months for non-ambulatory patients. Radiographic assessment follows if there is visual evidence of scoliosis.[29]
Mental health
The mental health and quality of life of patients with DMD and other muscular dystrophies should be screened at every clinic visit by a mental health professional or other suitably trained staff using an appropriate tool. If mental health problems are identified, referral to a psychologist and psychiatrist is appropriate.[30]
The psychological wellbeing of families and carers should also be monitored, and support and/or interventions offered as needed.[30]
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