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
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.
Authors
- Kirsty Ohly
- Roger Walton
- Michela Guglieri (ORCID: https://orcid.org/0000-0002-8455-0637)
- Philip Henman
- C. Turner (ORCID: https://orcid.org/0000-0001-6674-6970)
- W.G. Atherton
- Clare Carpenter
- M. James (ORCID: https://orcid.org/0000-0001-8078-7744)
- Sze Choong Wong (ORCID: https://orcid.org/0000-0003-2845-6555)
- Donald Campbell (ORCID: https://orcid.org/0009-0006-2639-7001)
- Anna Porter (ORCID: https://orcid.org/0000-0002-2759-0819)
- N. Giannakakis
- Emily Reuben
- Mark Dixon (ORCID: https://orcid.org/0000-0002-1430-115X)
- Shuko Joseph
- Darius Rares Rad (ORCID: https://orcid.org/0000-0002-9957-0905)
- James Aird (ORCID: https://orcid.org/0000-0001-5746-6643)
- Nigel Kiely
- Alison Hulme
- Thomas Girdler-Hardy
- Maria Belen Carsi (ORCID: https://orcid.org/0000-0002-3636-1671)
Institutions
- University of Liverpool (GB)
- University of Strathclyde (GB)
- Chelsea and Westminster Hospital NHS Foundation Trust (GB)
- University Hospitals of North Midlands NHS Trust (GB)
- Royal Hospital for Children (GB)
- Newcastle upon Tyne Hospitals NHS Foundation Trust (GB)
- Bristol Royal Hospital for Children (GB)
- Robert Jones and Agnes Hunt Orthopaedic Hospital (GB)
- Ninewells Hospital (GB)
- University Hospital Southampton NHS Foundation Trust (GB)
- Birmingham Children's Hospital (GB)
- Noah's Ark Children's Hospital for Wales (GB)
- Duchenne UK (GB)
- Alder Hey Children's Hospital (GB)
- University Hospitals Plymouth NHS Trust (GB)
- Newcastle University (GB)
Publication Details
- Journal
- Journal of Children s Orthopaedics
- Published
- 2025-06-24
- DOI
- https://doi.org/10.1177/18632521251348972
- Citations
- 1
- Primary Topic
- Neurogenetic and Muscular Disorders Research
- Type
- article
- Field-Weighted Citation Impact
- 1.63
Funders
- Duchenne Research Fund