01 Aug 2025
Development of a guideline for orthopaedic management in the care of children and young people with Duchenne muscular dystrophy in the UK National Health Service
Authors:
Philip D Henman 1 , Catherine Turner 2 , James Aird 3 , William Guy Atherton 4 , Donald Campbell 5 , Clare Carpenter 6 , Maria Belen Carsi 7 , Melville Dixon 8 , Nikolaos Giannakakis 9 , Thomas Girdler-Hardy 1 , Alison Hulme 10 , Meredith James 2 , Shuko Joseph 11 , Nigel T Kiely 12 , Kirsty Ohly 13 , Anna Porter 1 , Darius Rad 14 , Emily Reuben 13 , Roger Walton 15 , Sze Choong Wong 16 , Michela Guglieri 1 2 Affiliations collapse Affiliations 1 Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle Upon Tyne, UK. 2 Faculty of Medical Sciences, John Walton Muscular Dystrophy Research Centre, Newcastle University, Newcastle Upon Tyne, UK. 3 University Hospitals Plymouth NHS Trust, Plymouth, UK. 4 Department of Orthopaedic Surgery, Bristol Royal Hospital for Children, Bristol, UK. 5 Department of Orthopaedics and Trauma, Ninewells Hospital and Medical School, Dundee, Scotland, UK. 6 Children’s Hospital for Wales Cardiff, Cardiff, UK. 7 University Hospitals of North Midlands NHS Trust, Stoke-on-Trent, UK. 8 The National Centre for Prosthetics and Orthotics, University of Strathclyde, Glasgow, UK. 9 Birmingham Children’s Hospital, Birmingham, UK. 10 Department of Trauma and Orthopaedics, Chelsea and Westminster Hospital NHS Foundation Trust, London, UK. 11 Department of Paediatric Neurology, Royal Hospital for Children, Glasgow, UK. 12 The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust, Oswestry, UK. 13 Duchenne UK, London, UK. 14 Paediatric Orthopaedics, University Hospital Southampton NHS Foundation Trust, Southampton, UK. 15 Alder Hey Children’s Hospital, Liverpool, UK. 16 Bone and Endocrine Research Group, Royal Hospital for Children, Glasgow, UK.
People living with the rare, genetic condition Duchenne muscular dystrophy have particular orthopaedic care needs that are not universally understood or implemented at sites across the UK, putting them at risk of not receiving the correct treatment. They may require orthopaedic management and intervention for contractures caused by their muscle weakness. Importantly, they are also at a high risk of fractures due to increased bone fragility as part of the nature of Duchenne muscular dystrophy but also resulting from reduced weight-bearing and from the long-term use of corticosteroids as standard of care. In addition, progressive skeletal muscle weakness increases the risk of falls that may cause fractures. DMD Care UK’s orthopaedic working group has developed a guideline by consensus to inform all those involved in the orthopaedic management of people with Duchenne muscular dystrophy about the care needs and imperatives. This covers children and adults and focuses on fracture management and elective orthopaedic procedures. The guideline has been endorsed by the British Society for Children’s Orthopaedic Surgery.