Wheelchair Skills Training for People with ARSACS and DM1

NCT ID: NCT06596850

Last Updated: 2024-09-19

Basic Information

• Recruitment Status: NOT_YET_RECRUITING
• Clinical Phase: NA
• Total Enrollment: 20 participants
• Study Classification: INTERVENTIONAL
• Study Start Date: 2024-09-15
• Study Completion Date: 2026-04-30

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

Study Design

• Allocation Method: RANDOMIZED
• Intervention Model: CROSSOVER
• Primary Study Purpose: TREATMENT
• Blinding Strategy: SINGLE

Study Groups

Wheelchair Skills Training Program (WSTP)

Standardized wheelchair skills training program.

Group Type: EXPERIMENTAL

Wheelchair Skills Training Program

Intervention Type: 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.

Control

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

Group Type: NO_INTERVENTION

No interventions assigned to this group

Interventions

Wheelchair Skills Training Program

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.

Intervention Type: BEHAVIORAL

Eligibility Criteria

Inclusion Criteria

• ≥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).

Exclusion Criteria

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

• Minimum Eligible Age: 18 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: Yes

Sponsors

Laval University

OTHER

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Locations

Centre for Interdisciplinary Research in Rehabilitation and Social Integration

Québec, Quebec, Canada

Countries

Canada

Central Contacts

Krista L Best, PhD

Role: CONTACT

krista.best@fmed.ulaval.ca

418-529-9141

References

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.

Reference Type: DERIVED

PMID: 40742628 (View on PubMed)

Other Identifiers

2025-3100

Identifier Type: -

Identifier Source: org_study_id