Cultivating Self-Compassion Course for Persons Living With Amyotrophic Lateral Sclerosis
Overview
- Phase
- N/A
- Intervention
- Not specified
- Conditions
- Amyotrophic Lateral Sclerosis
- Sponsor
- Washington University School of Medicine
- Enrollment
- 5
- Locations
- 1
- Primary Endpoint
- Quality of Life self-assessment with - Amyotrophic Lateral Sclerosis Assessment Questionnaire 5 (ALSA-5)
- Status
- Completed
- Last Updated
- 3 years ago
Overview
Brief Summary
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.
Detailed Description
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).
Investigators
Eligibility Criteria
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.
Outcomes
Primary Outcomes
Quality of Life self-assessment with - Amyotrophic Lateral Sclerosis Assessment Questionnaire 5 (ALSA-5)
Time Frame: Baseline (T1); post 8-week intervention (T2)
Amyotrophic Lateral Sclerosis Assessment Questionnaire 5 (ALSAQ-5; Jenkinson et al., 2001.
Secondary Outcomes
- Feasibility of implementation(Baseline (T1); post 8-week intervention (T2))
- Acceptability(Baseline (T1); post 8-week intervention (T2))
- Self-compassion(Baseline (T1); post 8-week intervention (T2))
- Participant functional rating self-assessment(Baseline (T1); post 8-week intervention (T2))
- Anxiety(Baseline (T1); post 8-week intervention (T2))
- Depression(Baseline (T1); post 8-week intervention (T2))
- Appropriateness(Baseline (T1); post 8-week intervention (T2))