Wheelchair Skills Training for People with ARSACS and DM1

Official title

Efficacy of Wheelchair Skills Training to Improve Mobility for People with ARSACS and DM1

Overview

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.

Interventions

• Behavioral 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 previous

Primary outcome measures

• Wheelchair Skills Test Questionnaire (WST-Q) [Time frame: Baseline (T1); immediately post intervention up to 5 weeks after baseline (T2); 3-months follow-up (T3)]

Secondary outcome measures (2)

• Wheelchair Skills Test (WST) [Time frame: Baseline (T1); immediately post intervention up to 5 weeks after baseline (T2); 3-months follow-up (T3)]
• Wheelchair Use Confidence Scale (WheelCon) [Time frame: Baseline (T1); immediately post intervention up to 5 weeks after baseline (T2); 3-months follow-up (T3)]

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.

Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.

Healthy volunteers: Yes

Study design

Allocation

Randomized

Model

Crossover

Masking

Single blind

Primary purpose

Treatment

Study locations

Canada · 1 center

• Centre for Interdisciplinary Research in Rehabilitation and Social Integration — Québec

Publications

• 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

Identifiers

NCT: NCT06596850 · 2025-3100

Primary sources (government registries)

• ClinicalTrials.gov (US NIH)

View this study on ClinicalTrials.gov ↗