Patient care & support

Our new guidance for better DMD respiratory care

We have launched new guidance to protect respiratory function in people with Duchenne muscular dystrophy (DMD), which has been endorsed and supported by the British Thoracic Society.

The recommendations were created by our DMD Care UK programme and will help patients, parents, caregivers and healthcare professionals to be informed about the very best respiratory care in DMD and improve care delivery across the UK.

Why the guidance is needed

As people with DMD get older and the disease progresses, they are at risk of respiratory issues. This is due to the lack of dystrophin, a protein that protects the muscles, including the diaphragm and muscles that control breathing and coughing. The lungs are not directly affected, but the muscles around them that control inspiration and expiration (breathing in and out) are.

Currently, there is no medication to prevent respiratory muscle weakness but there are vital steps you can take to delay it, including starting routine checks from around six years of age. The new guidelines explain how early monitoring and ongoing management help to keep the respiratory system healthy for as long as possible. They also explain some of the important things that need to be understood by clinicians treating a person with DMD in an emergency or during an illness.

Clinical recommendations for respiratory care

DMD Care UK is a collaboration between Duchenne UK and the John Walton Muscular Dystrophy Research Centre at Newcastle University which aims to improve care for all people with DMD.

The new clinical recommendations and guidelines for respiratory care were produced by DMD Care UK’s Respiratory Working Group, which is chaired by Dr Anne-Marie Childs.  The work has been endorsed by the British Thoracic Society and published in Thorax, an international respiratory and clinical care journal.

Dr Ben Messer, who was the British Thoracic Society representative on the Working Group, said:

“As patients with Duchenne muscular dystrophy are living longer, they are increasingly likely to present to acute services including respiratory medicine and critical care medicine. This document highlights critical management points during an acute admission. It also details the general respiratory management and the important triggers for referral to complex home ventilation services for further assessment and follow-up. The document benefits from multi professional input as well as patient representation and is a pragmatic guide to the long-term and acute respiratory management of patients with Duchenne muscular dystrophy.”

Respiratory care guide for DMD patients and families

We have also worked with the patient community to produce a family guide based on these recommendations.

Phillippa Farrant, a patient representative who worked on the new patient guide and clinical recommendations, explains their importance:

“As the parent of a son who had Duchenne and having had to battle through the myriad of issues around respiratory care, I felt it important to reflect the patient voice and lived experience when devising the new recommendations and care guide. It’s important to get it right to make the lives of those in the Duchenne community easier.”

The guidelines for clinicians and be downloaded here, and the patient leaflet can be downloaded here. You can find and order all our DMD Care UK guides and recommendations at dmdcareuk.org

Published on 31 January 2024

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