The Neuromuscular Disease Network for Canada

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Clinical guidelines

Development, dissemination, and implementation of clinical guidelines (Leads: Cynthia Gagnon, Reshma Amin, Kathryn Selby, MDC)

Canadian neuromuscular clinicians and scientists have contributed to the development of practice guidelines and other informational products for patients and families for several NMDs such as DMD, SMA and DM1, through local, national and international initiatives such as the American Academy of Neurology and European recommendations. These guidelines are important tools to help guide clinical practice and shared decision making and thereby improve outcomes for Canadians living with NMDs. However, several challenges remain, including a lack of comprehensive clinical practice guidelines that address the role of each member of the multidisciplinary team (even for the most common NMDs) and lack of awareness of available knowledge translation products by clinic teams, allied health professionals, patients and their families. A better coordinated effort to develop, disseminate, implement or monitor uptake of these KT products across Canadian NMD centres is required. For improved implementation of KT products, NMD4C will work with MDC’s patient experts and local champions in every NMD clinic (physician or allied health) according to a “community of practice” model. In addition, KT products will be disseminated to patients and families using an interactive NMD waiting room model through a demonstration project. NMD4C will disseminate existing clinical guidelines and clinician summaries to Canadian NMD clinics in English and French, make these available on the MDC website, and adapt these into patient-friendly material as demonstration projects when patient summaries are not available. Moving beyond medical care, we will develop clinical care guidelines (as a demonstration project) for health professionals for a prevalent NMD. We will consider youth engagement and education and skill supports and resources for all stakeholders and ensure sustainability with updating of guidelines and incorporating data collection to support evaluation of interventions. We will monitor the uptake and implementation of care guidelines using the CNDR and provide this information back to professionals and patients as a quality measure.

Outputs:

  • Adapt existing NMD care guidelines to Canadian context
  • Disseminate three NMD care guidelines to all Canadian clinical NMD centres in electronic format
  • Disseminate KT products using the interactive waiting room model in five NMD clinics*
  • Develop clinical care guidelines for three allied health professionals for a prevalent NMD*
  • Patient-friendly versions of clinical guidelines*

 

*to be supported by separate funding

wheelchair

Relevant publications

Gagnon, C, Gallais, B. Understanding factors hampering activities of daily living performance in childhood-onset myotonic dystrophy phenotypes. Dev Med Child Neurol. 2020.62 (6)665 PMID:31840805

Ashizawa, T, Gagnon, C, Groh, WJ, Gutmann, L, Johnson, NE, Meola, G et al.. Consensus-based care recommendations for adults with myotonic dystrophy type 1. Neurol Clin Pract. 2018.8 (6)507-520 PMID:30588381

Côté, C, Gagnon, C, Youssof, S, sKurtz, N, Brais, B. The requirement for a disease-specific patient-reported outcome measure of dysphagia in oculopharyngeal muscular dystrophy. Muscle Nerve. 2019.59 (4)445-450 PMID:30575974

El-Aloul, B, Altamirano-Diaz, L, Zapata-Aldana, E, Rodrigues, R, Malvankar-Mehta, MS, Nguyen, CT et al.. Pharmacological therapy for the prevention and management of cardiomyopathy in Duchenne muscular dystrophy: A systematic review. Neuromuscul. Disord. 2017.27 (1)4-14 PMID:27815032

Oskoui, M, Ng, P, Liben, S, Zielinski, D. Physician driven variation in the care of children with spinal muscular atrophy type 1. Pediatr. Pulmonol. 2017.52 (5)662-668 PMID:27685758

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