Wheelchair Skills Training for People with ARSACS and DM1

NCT06596850 | Not Yet Recruiting

• 1 other identifier: 2025-3100
• Study Type: interventional
• Target: 20
• Locations: 1 country
• Sites: 1

Brief Summary

Wheelchairs (WC) are often provided to people with ARSACS and MD1 when they are not able to walk anymore. However, giving someone a MWC alone does not guarantee they will use it safely or properly. Many people who use WC need help from others to get around and they can not always do the things they like to do. This can lead to isolation, stress, and reduced quality of life. In addition, poor use of a MWC could lead to accidents and injuries. Our team recently showed that people with ARSACS have lower MWC skills than other adults who use MWC, and that teaching MWC skills to people with ARSACS seems to work. Now we are ready to test the program with more people with ARSACS and MD1 to see how it can improve MWC mobility and confidence. We also want to hear about people's expectations and experiences with MWC training. People who take part in research will answer questions before and after WC training, and we will follow up with them 3 months later to ask again about their WC use. This projects directly adresses the mobility needs of people with ARSACS and MD1 who use MWC. 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 MD1. Learning just one MWC skill could be life-changing. It could mean the difference between leaving the house or not, which could impact the ability to shop for groceries, see friends, or to have a job.

Conditions

Wheelchair Mobility; Manual Wheelchair Skills Training; ARSACS; Myotonic Dystrophy Type 1

Outcome Measures

Primary Outcomes (1)

• Wheelchair Skills Test Questionnaire (WST-Q)

  Subjective report of participants' perceived manual wheelchair skills (performance and frequency). The WST-Q comprises 30 discrete manual WC skills. Skills are scored on a scale ranging from 0 (cannot execute skill) to 3 (can execute skill with expertise); a total percentage score (0-100%) is calculated with higher scores representing greater wheelchair skills. The WST-Q can be completed in \~15 minutes, has strong psychometric properties in English and French, and has been used extensively in clinical trials. The WST-Q has been validated by the study team for ARSACS.

  Baseline (T1); immediately post intervention up to 5 weeks after baseline (T2); 3-months follow-up (T3)

Secondary Outcomes (2)

• Wheelchair Skills Test (WST)

  Baseline (T1); immediately post intervention up to 5 weeks after baseline (T2); 3-months follow-up (T3)

• Wheelchair Use Confidence Scale (WheelCon)

  Baseline (T1); immediately post intervention up to 5 weeks after baseline (T2); 3-months follow-up (T3)

Study Arms (2)

Wheelchair Skills Training Program (WSTP)

EXPERIMENTAL

Standardized wheelchair skills training program.

Behavioral: Wheelchair Skills Training Program

Control

NO INTERVENTION

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

Interventions

Wheelchair Skills Training Program BEHAVIORAL

Participants will receive 5, 45-minute weekly WC skills training sessions that will take place in the community, in and around the participants home. Each session will be customized to the participant's' goals and based on the learner's impairments (i.e., weakness, spasticity, movement disorders \[e.g. ataxia, tremor\], contractures, cognition). The WSTP sessions will begin with a 5-minute review of goals/progress, followed by a 10-minute warm-up (wheeling activities, random practice of previously leaned skills); 20 minutes of attempting new skills (training on each skill will be carried to next session until the skills are learned or until the trainer and participant mutually agree that training should be abandoned; the trainer will periodically ask the participant to practice newly learned skills to incorporate variability of practice); 10 minute cool-down, during which the participant will practice skills in a self-controlled environment.

Wheelchair Skills Training Program (WSTP)

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• ≥18 years of age, have a diagnosis of ARSACS or DM1, and use a manual WC for mobility (≥3 times/week for ≥8 hours/week).

You may not qualify if:

• anticipate a health condition or procedure that contraindicates training (e.g., surgery); or concurrently or planning to receive WC training during the study.

Sponsors & Collaborators

• Laval University: lead

Study Sites (1)

Centre for Interdisciplinary Research in Rehabilitation and Social Integration

Québec, Quebec, G1M 2S8, Canada

Location

Related Publications (1)

• Niyomwungere E, Routhier F, Gagnon C, Kirby RL, Rodrigue X, Lessard I, Lettre J, Best KL. Efficacy of Manual Wheelchair Skills Training for Improving Skills and Confidence in People With Hereditary Degenerative Disorders: Protocol for a Sequential Multimethods Study. JMIR Res Protoc. 2025 Jul 31;14:e66974. doi: 10.2196/66974.

  PMID: 40742628 DERIVED

MeSH Terms

Conditions

Spastic ataxia Charlevoix-Saguenay type; Myotonic Dystrophy

Condition Hierarchy (Ancestors)

Muscular Dystrophies; Muscular Disorders, Atrophic; Muscular Diseases; Musculoskeletal Diseases; Myotonic Disorders; Heredodegenerative Disorders, Nervous System; Neurodegenerative Diseases; Nervous System Diseases; Neuromuscular Diseases; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities

Central Study Contacts

Krista L Best, PhD

CONTACT

418-529-9141; krista.best@fmed.ulaval.ca

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: RANDOMIZED
• Masking: SINGLE
• Who Masked: OUTCOMES ASSESSOR
• Purpose: TREATMENT
• Intervention Model: CROSSOVER
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: September 11, 2024
• First Posted: September 19, 2024
• Study Start: September 15, 2024
• Primary Completion: December 31, 2025
• Study Completion: April 30, 2026
• Last Updated: September 19, 2024

Record last verified: 2024-09

Data Sharing

• IPD Sharing: Will not share

Locations

CA (1)