Cultivating Self-Compassion Course for Persons Living With Amyotrophic Lateral Sclerosis

Study Purpose:

This study is designed to be a pragmatic, single-arm trial to evaluate the efficacy, implementation, and feasibility of an online ALS-specific self-compassion training program to enhance self-compassion and improve quality of life.


Amyotrophic Lateral Sclerosis (ALS),  Familial ALS

Study Type:

Observational Study

Study Category:

Study Status:

Not enrolling


Not Applicable

Study Chair(s)/Principal Investigator(s):

Sean Smith, MD Washington University School of Medicine ID (11 digit #):


Neals Affiliated?


Coordinating Center Contact Information

Washington University School of Medicine
Sean Smith, MD / .(JavaScript must be enabled to view this email address) / 314-362-6981
.(JavaScript must be enabled to view this email address) Saint Louis, Missouri 63110 United States

Full Study Summary:

Optimizing quality of life for people with ALS is a primary goal of ALS multidisciplinary care, Therefore, it is especially important to conduct research into interventions to address the psychological needs and well-being of people with ALS.

Recent studies have shown that mindfulness-based interventions promote improved quality of life for people with ALS. It is essential that such strategies as mindfulness-based interventions consider the specific needs of the ALS population and potential barriers to participation.

Very few studies have evaluated mindfulness-based interventions in the ALS population and no studies to date have evaluated self-compassion people with ALS. Self-compassion has been linked to increased emotional resilience, psychological well-being, and quality of life in multiple populations.

The intervention will include a 2-part workshop entitled 'Introduction to Mindful Self-Compassion for Persons Living with Amyotrophic Lateral Sclerosis.' Experience and feedback gained from the workshop will be incorporated into the format for an 8-week course in Cultivating Self-Compassion for persons living with ALS (Compassion pALS). Compassion pALS will be adapted from the Mindful Self-Compassion (MSC) Program to accommodate ALS clinical features and limit potential barriers to participation.

The primary outcome will be quality of life assessed with the Amyotrophic Lateral Sclerosis Assessment Questionnaire 5 (ALSA-5). Participants will be assessed at the 2-part workshop (T0, baseline), start of the 8 week Compassion pALS course (T1 = pre-intervention); after completing the intervention (T2, post-intervention). Secondary outcomes will include Secondary outcome measures the Self-Compassion Scale Short Form (SCS-SF), Patient Health Questionnaire-9 (PHQ-9), General Anxiety Disorder-7 (GAD-7), Amyotrophic Lateral Sclerosis Functional Rating Scale-R (ALSFRS-R), Feasibility of Intervention Measure (FIM), Acceptability of Intervention Measure (AIM), and Intervention Appropriateness Measure (IAM).

Study Sponsor:

Washington University School of Medicine

Participant Duration:

Estimated Enrollment:


Estimated Study Start Date:


Estimated Study Completion Date:


Posting Last Modified Date:


Date Study Added to

  • Eligibility Criteria


    Female, Male

    Minimum Age:


    Maximum Age:


    Time since Symptom Onset:

    Time since Diagnosis:

    Can participants use Riluzole?


    Inclusion Criteria:

    • Diagnosis of ALS within the last 18 months.
    • 18 years or older
    • Access to and the physical ability to use a computer with internet access with and/or without adaptive devices.
    • Ability to communicate and understand tasks.
    • A caregiver available to provide assistance.
    • Ability to provide informed consent

    Exclusion Criteria:

    • More than one neuropsychological impairment such as (frontotemporal dementia) which may interfere with the study procedures.
    • Severe medical condition that would reduce life expectancy to less than 6-12 months.
    • No access to a computer with internet access
    • Unsuitable for the study as determined by the Investigator.

  • Site Contact Information

    Washington University School of Medicine
    Saint Louis, Missouri 63110
    United States