Current Projects

What is the purpose of this project?

As ALS is diagnosed by ruling out other diagnoses, the time from symptom onset to diagnosis in a multidisciplinary ALS clinic can be drawn out. There may be particular areas where patients tend to get slowed down within the healthcare system, which contributes to a diagnostic delay. When a diagnosis is delayed, patients may no longer be eligible for the standard of care medications, ultimately affecting their prognosis. Therefore, we are aiming to collect information on experiences from initial symptom onset to the time that an individual first enters an ALS specialty clinic. We aim to gather information on the diagnostic experience of patients and understand physician experiences when they are referred to patients who may have ALS in order to identify areas within the healthcare system that contribute to diagnostic delay.

What is involved in participating?

We are currently recruiting people with ALS and physcians for brief interviews. You can participate using your home computer, tablet or smartphone. The semi-structured interview will be approximately 30 minutes at a time that works for you. We would like to understand challenges and barriers to identify areas in the referral process that can be improved.

This project has been approved by the Research Ethics Board at the University of Alberta. The Ethics ID number is Pro00103667. You may contact the Research Ethics Office at 780-492-0459 if you have any questions about your rights as a participant.

If you are interested in participating, contact us at mcguckin@ualberta.ca or you can read the information sheet.

We are looking for people living with ALS and family members/caregivers who may be interested in contributing to ALS research by volunteering as a member of an advisory council. The advice of people living with ALS and family members is very important to researchers. It is important for advocacy organizations like ALS Canada. Advisory councils improve ALS research. They spread awareness and understanding. More understanding means more advocates for ALS support and research. To find out more information about volunteering on the advisory council, you can visit the embedded link.

Here are some of the things advisory councils may help with:

• • • Shape goals and priorities for advocacy and research.

    • Give feedback. For example, feedback on research activities, documents, and outreach activities.

    • Share perspectives on important issues. For example, access to research participation or trial treatments.

    • Make sure research methods are feasible.

    • Make sure research is sensitive to the needs of people living with ALS.

    • Provide feedback for presentations or publications.

If you are interested, you can contact als.talk@ualberta.ca or 780-492-5548

Effective and ethical clinical communications, from diagnosis to end of life, are the foundation of the therapeutic relationship between persons living with ALS, their caregivers and health care providers. Previous research suggests clinical communications are not meeting the evolving needs of persons living with ALS and their caregivers. Further complicating clinical communications is the complex information environment that persons with ALS, their caregivers and health care providers must navigate. In the absence of national guidelines for ALS care, Canadian clinics follow varying standards of practice. Challenges in providing support to persons with ALS also vary throughout the country. As a result, persons with ALS and their caregivers likely have different information needs across Canadian provinces. We used online focus groups to analyze information needs, information sources, and information gathering strategies of persons living with ALS and their caregivers.

Project Updates

• We have completed the ALS TALK Project online focus groups for people with ALS and family members/caregivers. Thank you to everyone who shared their experiences and reflections! We are beginning to analyze comments and conversations from the focus groups.

• To find out more information about ALS TALK updates, you can visit the embedded link.

Amyotrophic Lateral Sclerosis (ALS) is a motor neuron disease in which the person becomes more and more paralyzed and eventually experiences respiratory failure. There are treatments to manage symptoms, but no cure. Talking about end-of-life is difficult, but important. Health care providers (HCPs) need to be good at talking with people with ALS about their options at end of life so they can make the best choices at end of life for themselves and their families. In Canada, medical assistance in dying (MAiD) has been available for some patients with some conditions since 2016. This has changed how people talk about end-of-life options and dying.

Most Canadian physicians who treat people with ALS felt unprepared for the policy and service rollout of MAiD. They also have little experience with MAiD to draw upon to inform their practice and communication with patients.

The goal of our study is to understand how the first few years of MAiD in Canada have changed how HCPs talk to people with ALS in their care about end-of-life. This will help us understand challenges HCPs face talking to people with ALS about end-of-life, and ultimately how to help HCPs have these discussions.

If you are interested in participating in this study, you can contact Westerly at wluth@ualberta.ca