Survey of the functional priorities in patients with disability due to neuromuscular disorders

Abstract

Title: Survey of the functional priorities in patients with disability due to neuromuscular disorders.

Objective: This study attempts to determine the functional priorities for patients with neuromuscular disorders.

Methods: A survey asking about functional priorities with respect to activities of daily living, ankle foot orthotic design, and assistive device design, was distributed to patients with neuromuscular disorders to assess the needs of patients from their perspectives. Descriptive statistics were used to analyse answers.

Results: A total of 171 subjects with neuromuscular disorders responded to the questionnaire. Of the respondents with weakness in both the upper and lower extremities, 45% stated that if they had to choose between correction of one or the other, they would prefer that of their lower extremities. Activities that patients most frequently wanted to gain independence with were mobility and transfers (46%), followed by toilet use and hygiene (32%). The most popular control mechanism of an assistive device was voice activation (35%).

Conclusion: This study assessed the functional priorities of those with neuromuscular disorders. Although such individuals can experience a range of weakness in the upper and/or lower extremities, common functional priorities were reported: independence with mobility, transfers, toilet use and hygiene. Knowledge of these priorities will help guide development of assistive devices that will restore function in the future.

Implications for Rehabilitation

•     Neuromuscular Disorders

•  • Neuromuscular disorders result in disabling weakness; there are few cures and many are unable to carry out activities of daily living.

•  • Information that would be helpful in determining functional priorities is limited.

•  • In a survey of 171 patients with neuromuscular disorders, functional priorities included mobility and transfers (46%), followed by toilet use and hygiene (32%).

•  • Of the respondents with weakness in both the upper and lower extremities, 45% stated that if they had to choose between correction of one or the other, they would prefer that of their lower extremities.

•  • If an assistive device were to be created to help those with neuromuscular disorders, the most popular control mechanism would be voice activation (35%).

Keywords:

• Neuromuscular disorders
• assistive devices
• muscular dystrophy association
• functional priorities
• ankle foot orthotics

Acknowledgement

We would like to acknowledge Christine Blaumueller for her professional scientific editing of this work.

Disclosure statement

The authors report no declarations of interest.

Additional information

Funding

NUJ received a Muscular Dystrophy Association Clinical Research Training grant and a University of Iowa Internal Funding Initiatives award toward this research.