Guide for families and family doctors

Guide for families and family doctors
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  • Thomas Sejersen
    Thomas Sejersen
    Thomas Sejersen holds positions as Professor in Neuropediatrics at the Department of Women's and Children's...

TREAT-NMD worked with the authors of the international consensus statement on care for patients with spinal muscular atrophy to create useful summary factsheets based on the full published document. A TREAT-NMD working group is continuing to develop the standards for care on SMA in areas such as physical and occupational therapy, orthopaedics, nutrition and psychosocial implications.

We are very interested in talking with patients and clinicians about these recommendations and suggestions for their future improvement. If you're interested, please email the TREAT-NMD team at info@treat-nmd.eu.

Document downloads

Individual documents are available for download in a number of languages are feature on the 'Guides in different languages page', along with the original published journal article, the "Consensus Statement for Standard of Care in Spinal Muscular Atrophy".

Click here to download the English text as a PDF brochure with pictures.

Translations

We believe it is crucial to have this type of information about standards of care available in patients' and clinicians' native languages, and we are therefore in the process of translating it into a number of languages with the generous help of multilingual staff within the TREAT-NMD network and colleagues from patient organisations. If you are interested in translating our factsheets into your language for hosting on our website, please contact the TREAT-NMD team at info@treat-nmd.eu - we'd love to hear from you!

Recently added translations include: Polish, Dutch, Italian and Turkish.

Translations that are currently in progress include: Slovenian

More about the précis

This precis outlines the objective, methods, and results of the work by the SCC on identifying guidelines for standards of care for SMA. The full report, entitled “Consensus Statement for Standard of Care in Spinal Muscular Atrophy”, J Child Neurology 2007: 22: 1027, may be obtained from the journal's website or from the downloads section to the right.

Objective

To identify practice guidelines for the care of spinal muscular atrophy (SMA). Recent progress in the understanding of the molecular pathogenesis of SMA and improvements in medical technology have not been matched by similar developments in the care for SMA patients. Variations in medical practice coupled with differences in family resources and values have resulted in variable clinical outcomes that are likely to compromise the valid measurement of treatment effects during clinical trial studies.

Methods

The International Standard of Care Committee (SCC) for SMA was formed in 2005 with the goal of establishing practice guidelines for the clinical care of SMA patients. The 12 core committee members worked with over 60 SMA experts in the field; through conference calls, e-mail communications, Delphi survey, and two in-person meetings to achieve consensus on 5 care areas: Diagnostic/New Interventions, Pulmonary, Gastrointestinal/Nutrition, Orthopedics/Rehabilitation, and Palliative Care.

Results

Consensus was achieved in several topics regarding common medical problems in SMA, the diagnostic strategies, recommendations for assessment and monitoring, and for therapeutic interventions in each care area. A consensus statement was drafted to address the 5 care areas according to three functional levels of the patients: non-sitter, sitter, and walker. Several medical practices were also identified where there is no consensus, and these warrant further investigation.

 
03 Mar 2011