Canadian Best Practice Recommendations for the Management of ALS

In November 2020, the first-ever ALS Canadian best practice recommendations (BPRs) were published in the Canadian Medical Association Journal. Developed over a number of years by a working group of Canadian ALS clinicians, this document represents what specialists in ALS care agree should be the standard of care for any Canadian diagnosed with ALS.

Why is it important to have best practice recommendations?

Up until the BPRs were published, there was not an agreed-upon standard of clinical care for Canadian ALS patients. That means that the care available to people living with ALS could differ depending on where they live because of access to resources and local health system supports. The best practice recommendations:

  • Establish a national standard for the care and management of people living with ALS and addresses issues relevant to a Canadian context, like medical assistance in dying.
  • Enable healthcare providers to offer the best possible care and help families affected by ALS to navigate this complex and devastating disease.
  • Empower people living with ALS, their families and healthcare providers to make informed, collaborative decisions about ALS
  • Create a foundation to advocate for the best possible standards of care consistent with the best available evidence and expert consensus.

What do the best practice recommendations say?

There are more than 130 recommendations across a range of areas:

  • Communicating an ALS diagnosis
  • Disease-modifying therapies
  • Multidisciplinary care
  • Respiratory management (including screening, ventilation, and airway clearance)
  • Nutritional management (including feeding tubes and diet modification)
  • Venous thromboembolism (blood clots)
  • Medication alignment
  • Symptom management (including pain, muscle twitches, drooling, uncontrolled laughing/crying, muscle stiffness, cramps, depression, anxiety, insomnia,
  • Dysarthria (weakened speech muscles)
  • Exercise
  • Cognition and behaviour
  • Caregivers
  • Palliative care

Read the Canadian best practice recommendations for the management of amyotrophic lateral sclerosis published in the Canadian Medical Association Journal.

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