We are delighted to announce that the revised Standards of Care for Duchenne were published in The Lancet Neurology this week; a high-impact peer-reviewed journal. The care guidelines were drafted by international experts from a wide range of specialist disciplines and were published in three parts, in separate articles, which are free to access (see links below).
Action Duchenne originally co-funded the translation of the original standard of care guidelines, into the widely used family guide and continues to be at the forefront of these developments.
The new care considerations aim to address the needs of young people living with Duchenne, to provide guidance on advances in clinical assessments, in light of emerging treatments. The committee identified 11 topics, eight of which were addressed in the original care considerations. The three new topics are primary care and emergency management, endocrine management (covering growth and development and potential hormone deficiencies) and quality of life and care for the lifetime of young people living with Duchenne.
In part 1 of the three-part update, the focus was on the diagnosis of Duchenne and neuromuscular, rehabilitation, endocrine (growth, puberty, and hormonal deficiencies like adrenal insufficiency) and gastrointestinal (including nutrition and difficulty in swallowing) management.
In part 2, the recommendations included respiratory, cardiac, bone health and osteoporosis and orthopaedic and surgical management.
The last article highlighted primary care, emergency management and psychosocial issues. This part includes assessments and interventions to improve independence, and quality of life in critical domains of living, including health care, education, employment and interpersonal relationships.
We are pleased that the process that developed these updated recommendations has been approved by the NHS Evidence Accreditation Scheme – showing that the new standards of care are based on the very highest level of evidence.
Multidisciplinary care has evolved since the publication of the original Standard of Care guidelines in 2010. Action Duchenne originally co-funded the translation of the original standard of care guidelines, into the widely used family guide and continues to be at the forefront of these developments.
We are pleased with these updated recommendations and shall continue to ensure these are widely adopted across the UK and internationally. We will be working with key international stakeholders and fellow Duchenne organisations on the updated family guide, which will be released later this year.
Lancet Neurology articles:
- Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management
- Diagnosis and management of Duchenne muscular dystrophy, part 2: respiratory, cardiac, bone health, and orthopaedic management
- Diagnosis and management of Duchenne muscular dystrophy, part 3: primary care, emergency management, psychosocial care, and transitions of care across the lifespan
We always look forward to hearing from you and are delighted to answer any questions or support you any way we can, please feel free to contact Angela or Neil.
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