What side effects are associated with this type of intervention?

Common treatments for Neuromuscular Disease (NMD) include pharmacological interventions such as immunosuppressants, corticosteroids, and anticholinesterase medications, which can have side effects like increased infection risk, weight gain, hypertension, and gastrointestinal issues. Non-pharmacological treatments, such as the emotional and informational support studied in the Peer Support Program, generally have minimal side effects but can sometimes lead to emotional fatigue or burnout for caregivers. Overall, non-pharmacological interventions are considered safe and beneficial for improving quality of life and reducing stress.

What prior FDA approvals exist?

FDA-approved treatments for neuromuscular diseases include drugs like eteplirsen and golodirsen for Duchenne muscular dystrophy, which work by increasing dystrophin production. While these treatments focus on the biological aspect of the disease, the Peer Support Program emphasizes emotional and informational support, which is crucial for improving the quality of life for patients and caregivers. This program aims to reduce caregiver burden and social isolation, enhancing overall well-being through peer support.

What other types of research exist?

Promising novel alternatives to Peer Support Programs for NMD patients include: 1) Telerehabilitation programs, which offer remote motor assessments and rehabilitation exercises, enhancing accessibility and continuity of care. 2) Virtual physical activity programs, which provide structured, online group-based physical activities that improve physical and psychosocial well-being. 3) Interactive commercial off-the-shelf gaming systems, like the Nintendo Wii, which can augment conventional therapy and improve motor function. These alternatives leverage technology to provide comprehensive support and improve the quality of life for NMD patients.

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Virtual Peer Support for Neuromuscular Disease

N/A

Waitlist Available

Research Sponsored by The Hospital for Sick Children

Eligibility Criteria Checklist

Specific guidelines that determine who can or cannot participate in a clinical trial

Must have

Timeline

Screening 3 weeks

Treatment Varies

Follow Up 24 week

Awards & highlights

No Placebo-Only Group

Summary

This trial aims to help family caregivers of individuals with neuromuscular diseases by providing a peer support program. The program connects them with others who have similar experiences to offer emotional and informational support. This helps reduce stress and improve the caregivers' quality of life.

Who is the study for?

This trial is for family caregivers of individuals with neuromuscular disease (NMD) who live in Canada. Participants must be able to speak and read English and have access to the internet and a computer or tablet.

What is being tested?

The study is testing a Virtual Peer Support Program designed to educate, empower, and support family caregivers of individuals with NMD, aiming to improve their quality of life, increase self-efficacy, and reduce stress.

What are the potential side effects?

Since this intervention involves virtual peer support rather than medication or medical procedures, there are no direct physical side effects. However, participants may experience emotional responses related to sharing experiences.

Timeline

Screening ~ 3 weeks3 visits

Treatment ~ Varies

Follow Up ~ baseline

Screening ~ 3 weeks

Treatment ~ Varies

Follow Up ~baseline

This trial's timeline: 3 weeks for screening, Varies for treatment, and baseline for reporting.

Treatment Details

Study Objectives

Study objectives can provide a clearer picture of what you can expect from a treatment.

Primary study objectives

Family Caregiver (FC) mastery measured using the Pearlin Mastery Scale (PMS)

Family Caregiver (FC) mastery measured using the Pearlin Mastery Scale (PMS) at 24 weeks

Family Caregiver (FC) mastery measured using the Pearlin Mastery Scale (PMS) at12 weeks

Secondary study objectives

Caregiver Competency - measured using the Caregiving Competence Scale

Family Caregiver Burden and Stress - measured using the Zarit Burden Interview

Family Caregiver Depression and Anxiety: measured using the Depression and Anxiety Stress Scale

+1 more

Awards & Highlights

No Placebo-Only Group

All patients enrolled in this study will receive some form of active treatment.

Trial Design

2Treatment groups

Experimental Treatment

Active Control

Group I: InterventionExperimental Treatment1 Intervention

After informed consent, we will assign participants in a 1:1 ratio to the intervention or control group using Randomize.net. Participants randomized to intervention group will get access to the Virtual Peer Support Program.

Group II: ControlActive Control1 Intervention

Control group: Those randomized to the waitlist control will be given access to the peer support intervention on completion of the first 12-week program. A waitlist control group is an ethical alternative to no-treatment control groups when studying psychological and behavioral interventions 21. will have access to informational resources via the aTouchAway™ App and will also receive the intervention at the end of the trial.

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Research Highlights

Information in this section is not a recommendation. We encourage patients to speak with their healthcare team when evaluating any treatment decision.

Mechanism Of Action

Side Effect Profile

Prior Approvals

Other Research

Emotional and informational support are critical non-pharmacologic treatments for neuromuscular disease patients. Emotional support reduces stress and improves mental health by fostering a sense of community and understanding among patients and caregivers. Informational support empowers them with knowledge about the disease, treatment options, and coping strategies, leading to better disease management and improved quality of life. These interventions address the psychological and social aspects of living with neuromuscular diseases, which significantly impact overall well-being.

Energy expenditure, body composition and dietary habits in progressive supranuclear palsy.Active Videogaming Interventions in Adults with Neuromuscular Conditions: A Scoping Review."The impact of European Neuromuscular Centre (ENMC) workshops on the neuromuscular field; 25 years on …".