ICNC Abstracts, ICNC 2018

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Bone Health Monitoring In Boys With Duchenne Muscular Dystrophy: A Survey Of Clinical Practice In The United Kingdom NorthStar Clinical Network
Shuko Joseph, Nadia Capaldi, Marina DiMarco, Iain A Horrocks, Volker Straub, S Faisal Ahmed, Michela Guglieri, Sze Choong Wong, North Star Clinical Network

Last modified: 2018-09-09


Background: Osteoporosis leading to fragility fractures is a well-known side effects of corticosteroids and is common in boys with Duchenne muscular dystrophy (DMD).The importance of bone health monitoring has been highlighted in the revised standards of care for DMD (2018). These recommend vitamin D measurement and DXA scan annually and lateral thoracolumbar spine imaging to identify vertebral fracture at least every two years. Methods: An electronic survey on bone health monitoring was sent to specialised neuromuscular centres in the UK between March and May 2018. Results: 14/23(61%) centres responded. Vitamin D was measured annually in 11/14 centres(79%), six monthly in 1/14(7%) and at variable intervals in 2/14(14%). Screening spine imaging was only performed in 3/14(21%) centres. 8/11(73%) centres who do not routinely screen the spine by imaging, will consider this in case of back pain, DXA bone density SDS <-3.0 or clinical scoliosis. DXA scans were performed annually in 11/14(79%) centres, biennially in 1/14(7%) and only performed if fractures occurred in 2/14. None of the centres prescribed prophylactic bisphosphonate. The percentage of subjects on bisphosphonates were < 10% in 8/14 centres(57%), 10-25% in 5/14(36%) and > 50% in 1/14 centre. Metabolic bone or endocrine teams were involved in initiating and monitoring bisphosphonate therapy in 13/14 (93%). Conclusion: This survey shows variation in bone monitoring across the UK. Identification of barriers to implementing the bone monitoring pathway is crucial and requires cross-discipline collaboration. A re-audit of clinical practice is needed to identify changes in practice following the recently revisedcare standards.


Duchenne Muscular Dystrophy; Osteoporosis; Bone Monitoring; Fragility Fractures.

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