Canadian Best Practice Recommendations

Overview

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 from the CALS network, this document represents what specialists in ALS care agree should be the standard of care for any Canadian diagnosed with ALS.

With the new guideline, people living with ALS in Canada, their families and healthcare providers are also now empowered to make informed, collaborative decisions and advocate for optimal care consistent with best available evidence and expert consensus.

A set of icons representing ALS awareness

Objectives

Why is it important to have BPRs?

Up until the BRPs 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 support.

The Best Practice Recommendations for the Management of ALS:

Creates a National Standard

Establishes 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.

Enables quality care

Enable healthcare providers to offer the best possible care and help families affected by ALS to navigate this complex and devastating disease.

Empowers the ALS Community

Empowers people living with ALS, their families and healthcare providers to make informed, collaborative decisions about ALS – no matter where they reside in Canada.

Builds a Foundation to Advocate

Creates a foundation to advocate for the best possible standards of care consistent with the best available evidence and expert consensus.

An important step forward, the recommendations were developed to help enable ALS clinics across the country to meet a common national standard, offering the best possible care to patients and their families and helping them navigate this complex and progressive disease.

Dr. Christen Shoesmith • Chair of the ALS Best Practice Recommendations Working Group

Outcomes

A 13-member pan-Canadian Working Group of experts reviewed evidence and enlisted the feedback and input of stakeholders across the country to develop more than 130 recommendations across 13 areas of focus.

With this new guideline, people living with ALS in Canada, their families and healthcare providers are now empowered to make informed, collaborative decisions and advocate for optimal care consistent with best available evidence and expert consensus.

The 13 areas of BPRs focus

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

For an overview of the BPRs, you can check out this summary booklet:

Canadian Best Practice Recommendations For The Management Of Amyotrophic Lateral Sclerosis: Establishing a national standard for ALS care and treatment in Canada

For a full details, please visit the resource below:

The BPRs are not designed to replace any clinician's or care team's management, as every person and family in their care is unique.

They are designed to support decision-making and inform collaborative discussions between a person with ALS and their care team members.

Our support

The ALS Canada Research Program has supported all aspects of the evidence-based process to develop the recommendations, including convening the working group and professional literature searches.

Funding for the guideline was made possible through donations from the 2014 Ice Bucket Challenge.

We thank Canadians who enthusiastically supported the ALS community through the Ice Bucket Challenge which helped bring these recommendations to life. We continue to strive to make significant impacts with the ongoing generosity and support of Canadians coast to coast.

Tammy Moore • CEO, ALS Society of Canada

Our strong partnership and support to the CALS network, and our administrative support for development of the BPRs in Canada, continues to support every Canadian affected by ALS.

Today, all multidisciplinary clinics in the network aspire to adhere to BPRs, providing standard of care to all living with ALS.

Learn more about CALS

Additional resources

Find media releases and the full BPRs documentation below.

Articles & Infographic

BPRs full manuscript and appendixes

APPENDIX A – METHODS DOCUMENTS

APPENDIX B – EVIDENCE TABLES

Communications

Treatment

Multidisciplinary care

Canadian Thoracic Society home mechanical ventilation clinical practice guideline for ALS

Nutrition

Exercise

Learn About ALS

What if I might have ALS?

How to manage ALS

Additional Information

Support and Services

Additional Information

Ways you can help

Other ways to help

Learn About ALS Research

Additional Information

Learn About ALS Advocacy

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Learn about ALS Canada

Additional Information

Canadian Best Practice Recommendations

Supporting standard of care for all Canadians diagnosed with ALS.

Overview

Objectives

Why is it important to have BPRs?

The Best Practice Recommendations for the Management of ALS:

Outcomes

The 13 areas of BPRs focus

The BPRs are not designed to replace any clinician's or care team's management, as every person and family in their care is unique.

Our support

Additional resources

Articles & Infographic

BPRs full manuscript and appendixes

APPENDIX A – METHODS DOCUMENTS

APPENDIX B – EVIDENCE TABLES

APPENDIX C – STAKEHOLDER FEEDBACK ON DRAFT GUIDELINES