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Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
Published on: January 12, 2019
Duchenne muscular dystrophy: Canadian paediatric neuromuscular physicians survey
Hugh J McMillan1, Craig Campbell, Jean K Mah
1Division of Neurology, Department of Paediatrics, Children's Hospital of Eastern Ontario, Ottawa.
Insights
Pediatric Duchenne muscular dystrophy (DMD) care in Canada is consistent across multidisciplinary clinics. Physicians utilize deflazacort and comprehensive surveillance for complications, aligning with DMD guidelines.
Area of Science:
- Pediatric Neurology
- Clinical Research
- Musculoskeletal Disorders
Background:
- Duchenne muscular dystrophy (DMD) is the most prevalent childhood muscular dystrophy.
- Understanding current management practices is crucial for optimizing patient outcomes.
Purpose of the Study:
- To evaluate the current standard of care for pediatric Duchenne muscular dystrophy patients in Canada.
- To assess the composition of multidisciplinary teams and diagnostic/management strategies employed.
Main Methods:
- A survey was distributed to 17 physicians from the Canadian Paediatric Neuromuscular Group.
- Inquiries focused on team composition, diagnosis, corticosteroid use, and surveillance for orthopedic, respiratory, cardiac, and health maintenance issues.
Main Results:
- 14/17 physicians (82%) responded, with 12 managing DMD patients.
- All centers featured multidisciplinary teams, including respirology, neurology/physiatry, and allied health professionals.
- Deflazacort, calcium/vitamin D, night splints, and regular surveillance (pulmonary function, cardiac, bone density) were standard practices.
Conclusions:
- Pediatric DMD care in Canada is relatively uniform across multidisciplinary clinics.
- Current practices align with established guidelines for managing Duchenne muscular dystrophy.
Background:
Duchenne muscular dystrophy (DMD) is the most common form of muscular dystrophy in childhood.
Method:
To assess the current care of paediatric DMD patients in Canada, a questionnaire was mailed to 17 physicians who were members of the Canadian paediatric neuromuscular group. Areas of enquiry included; 1) multidisciplinary team composition; 2) means of DMD diagnosis; 3) corticosteroid use; surveillance and management for: 4) orthopaedic, 5) respiratory and 6) cardiac complications and 7) health maintenance (nutrition & immunizations).
Results:
Completed surveys were returned by 14/17 (82%) of physicians. Twelve respondents followed DMD patients. All centres had multidisciplinary teams, including respirology (11/12), child neurology or physiatry (11), physiotherapy (9), occupational therapy (9) and orthopaedic surgery (7). Deflazacort 0.9 mg/kg/d was used at all centres, which was continued after loss of independent ambulation (11), along with routine calcium and vitamin D supplementation (10). Night splints were prescribed at all centres. Routine surveillance studies included pulmonary function testing (11), sleep studies (10), EKG/echocardiogram (10), bone density (DEXA) scans (10), spine radiography (9), and dietician referral (4).
Conclusion:
Paediatric DMD patients are receiving relatively consistent care in multidisciplinary clinics across Canada, in accordance with recommended guidelines for DMD.
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