Development of respiratory care guidelines for Duchenne muscular dystrophy in the UK: key recommendations for clinical practice

• DOI: 10.1136/thorax-2023-220811
• Publication Date: 2023-12-20T18:25:32Z
• Authors: Anne-Marie Childs; Catherine Turner; Ronan Astin; Stephen Bianchi; John Bourke; Vicki Cunningham; Lisa Edel; Christopher Edwards; Phillippa Farrant; Jane Heraghty; Meredith James; Charlotte Massey; Ben Messer; Jassi Michel Sodhi; Patrick Brian Murphy; Marianela Schiava; Ajit Thomas; Federica Trucco; Michela Guglieri
• Keywords: Best practice; Respiratory care; Expert opinion; Clinical Practice

Significant inconsistencies in respiratory care provision for Duchenne muscular dystrophy (DMD) are reported across different specialist neuromuscular centres the UK. The absence of robust clinical evidence and expert consensus is a barrier to implementation recommendations public healthcare systems as need increase awareness key aspects those living with DMD. Here, we provide evidenced-based and/or consensus-based best practice children adults DMD UK, both part routine an emergency. Methodology Initiated by working group UK-based physicians (including British Thoracic Society (BTS) representatives), clinicians, physiotherapist patient representatives, draft guidelines were created based on published evidence, current opinion. After wider consultation UK teams services, was achieved these Result resulting presented form flow chart assessment monitoring, additional guidance separate setting out considerations emergency management. have been endorsed BTS. Conclusions These practical, reasoned all managing day-to-day acute hope that this will support patients professionals accessing high standards