Wheelchair Skills Training for Spastic Ataxia and Myotonic Dystrophy

Not yet recruiting at 1 trial location

Overseen By Krista L Best, PhD

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: Laval University

Disqualifiers: Surgery, Concurrent WC training, others

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Compensation: Varies

Number of Visits: 1

Duration: 5 weeks

What You Need to Know Before You Apply

What is the purpose of this trial?

This trial explores a wheelchair skills training program designed to assist individuals with spastic ataxia and myotonic dystrophy. The goal is to enhance participants' proficiency in using manual wheelchairs, thereby improving mobility, confidence, and quality of life. Researchers will gather participants' feedback on their experiences before and after the training to assess its effectiveness in facilitating easier movement. The trial seeks adults who have either condition and regularly use a manual wheelchair. As an unphased trial, it provides participants the chance to contribute to valuable research that could improve daily living for others with similar conditions.

Will I have to stop taking my current medications?

The trial information does not specify whether you need to stop taking your current medications.

What prior data suggests that this wheelchair skills training program is safe for people with ARSACS and MD1?

Research has shown that the Wheelchair Skills Training Program is generally safe for participants. Past studies have demonstrated that this training improves wheelchair skills without causing major side effects. The program teaches people to use their wheelchairs more effectively, leading to enhanced mobility and confidence. No evidence of harmful effects from this training has emerged. Participants have reported easier movement and improved performance in daily activities, suggesting that the training is both effective and well-tolerated. ^{1 2 3 4 5}

Why are researchers excited about this trial?

Researchers are excited about the Wheelchair Skills Training Program (WSTP) for spastic ataxia and myotonic dystrophy because it offers a hands-on approach to improving mobility and independence, which is not typically the focus of current treatments. Unlike standard care options that primarily involve medication and physical therapy to manage symptoms, this program provides a structured method to enhance wheelchair maneuverability skills. By empowering participants with practical skills, WSTP aims to improve daily functioning and quality of life, potentially reducing reliance on other medical interventions.

What evidence suggests that the Wheelchair Skills Training Program is effective for improving mobility in people with ARSACS and MD1?

Research has shown that the Wheelchair Skills Training Program, which participants in this trial may receive, helps people use wheelchairs more safely and confidently. Studies have found that this training improves the handling of manual wheelchairs, making everyday tasks easier. For individuals with spastic ataxia and myotonic dystrophy, acquiring these skills can enhance movement and increase opportunities for social activities. The training aims to reduce the need for assistance, leading to greater independence and a better quality of life. Early results suggest that learning even one new skill can significantly impact daily life, such as enabling independent outings. ^{1 2 3 4 5}

Are You a Good Fit for This Trial?

This trial is for individuals with ARSACS or Myotonic Dystrophy who rely on manual wheelchairs (MWC) for mobility. Participants should be those experiencing challenges in using their MWC effectively, which may impact their daily activities and quality of life.

Inclusion Criteria

I am over 18, diagnosed with ARSACS or DM1, and use a manual wheelchair often.

Exclusion Criteria

I am not expecting any health issues or surgeries that would stop me from training.

Timeline for a Trial Participant

Screening

Participants are screened for eligibility to participate in the trial

2-4 weeks

Treatment

Participants undergo a standardized wheelchair skills training program

5 weeks

Weekly sessions

Follow-up

Participants are monitored for wheelchair skills and confidence 3 months after training

3 months

1 visit (in-person or virtual)

What Are the Treatments Tested in This Trial?

Interventions

• Wheelchair Skills Training Program

Trial Overview The study tests a Wheelchair Skills Training Program designed to improve the ability of people with ARSACS and MD1 to use their manual wheelchairs safely and confidently, potentially enhancing their independence and participation in various activities.

How Is the Trial Designed?

Group I: Wheelchair Skills Training Program (WSTP) Experimental Treatment 1 Intervention

Standardized wheelchair skills training program.

Group II: Control Active Control 1 Intervention

Wait-list control group where participants will receive usual care from their clinician.

Who Is Running the Clinical Trial?

Laval University

Lead Sponsor

Trials

439

Recruited

178,000+

Published Research Related to This Trial

A wheelchair skills training program significantly improves manual wheelchair skills capacity in the short term, with a 13.26% increase in skills test scores compared to control groups in randomized controlled trials and a 23.44% increase in non-randomized studies.

While the training shows short-term benefits, the long-term effectiveness of manual wheelchair skills training and the effectiveness of powered wheelchair skills training remain unclear, with insufficient evidence to support lasting advantages.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Effectiveness and safety of wheelchair skills training program in improving the wheelchair skills capacity: a systematic review. Tu, CJ., Liu, L., Wang, W., et al.[2022]

A study involving 200 adults with myotonic dystrophy type 1 (DM1) identified upper extremity strength, particularly grip and lateral pinch strength, as strong indicators of difficulties in household activities, which can guide rehabilitation needs.

Specific cut-off scores for lateral pinch strength (4.8 kg) were established, showing good sensitivity and specificity, which can help health professionals determine when to refer DM1 patients for rehabilitation services.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Assessing upper extremity capacity as a potential indicator of needs related to household activities for rehabilitation services in people with myotonic dystrophy type 1. Raymond, K., Auger, LP., Cormier, MF., et al.[2015]

Disease-modifying therapies for spinal muscular atrophy (SMA) are significantly improving clinical outcomes, and physical therapists are essential in conducting clinical trials for these therapies, highlighting the need for their education on best practices.

The SMA Clinical Trial Readiness Program developed a Best Practices Clinical Evaluator Toolkit based on feedback from physical therapists, which aims to bridge knowledge gaps and enhance the effectiveness of rehabilitation practices for individuals with SMA.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Clinical and Research Readiness for Spinal Muscular Atrophy: The Time Is Now for Knowledge Translation. Krosschell, KJ., Dunaway Young, S., Peterson, I., et al.[2023]

The Endurance Shuttle Tests (ESNHPT, ESBBT, and ESWT) were validated as reliable measures of fatigability in 61 patients with Spinal Muscular Atrophy (SMA), showing that a significant percentage of patients experienced increased fatigability compared to healthy controls.

These tests demonstrated good test-retest reliability (ICC's from .78 to .91) and are effective for documenting physical impairments in SMA, making them promising tools for clinical trials focused on treatment efficacy.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Fatigability in spinal muscular atrophy: validity and reliability of endurance shuttle tests. Bartels, B., de Groot, JF., Habets, LE., et al.[2021]

In a 9-year study of 113 adults with myotonic dystrophy type 1, performance-based measures like the Timed Up and Go test and Berg Balance Scale effectively captured changes in mobility, balance, and muscle strength, aligning with patient-reported outcomes.

While most measures showed promising responsiveness, grip strength and manual dexterity assessments were less responsive, highlighting the importance of understanding measurement errors when interpreting long-term changes.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Responsiveness of performance-based outcome measures for mobility, balance, muscle strength and manual dexterity in adults with myotonic dystrophy type 1. Kierkegaard, M., Petitclerc, É., Hébert, LJ., et al.[2019]

Citations

1. pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov/articles/PMC12355141/

Efficacy of Manual Wheelchair Skills Training for Improving ... The overall aim of this study is to evaluate the efficacy of an evidence-based manual wheelchair skills training program for improving safe ...

2. withpower.com withpower.com/trial/phase-myotonic-dystrophy-8-2024-dd4bc

Wheelchair Skills Training for Spastic Ataxia and Myotonic ... The Wheelchair Skills Training Program is unique because it focuses on improving the ability and confidence of individuals to use wheelchairs effectively, ...

3. clinicaltrials.gov clinicaltrials.gov/study/NCT06596850

Study Details | NCT06596850 | Wheelchair Skills Training ... Our results may improve how therapists provide training for MWC use, which may improve mobility, participation, and quality of life for people with ARSACS and ...

4. researchgate.net researchgate.net/publication/390511258_Efficacy_of_manual_wheelchair_skills_training_for_improving_the_skills_and_confidence_of_people_with_hereditary_degenerative_disorders_Protocol_of_a_sequential_multi-methods_approach_Preprint

Efficacy of manual wheelchair skills training for improving ... Efficacy of manual wheelchair skills training for improving the skills and confidence of people with hereditary degenerative disorders: Protocol ...

5. pubmed.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov/40742628/

Efficacy of Manual Wheelchair Skills Training for Improving ... The primary outcome will be manual wheelchair skills performance. Secondary outcomes will include manual wheelchair skills capacity, self- ...