Adaptive equipment use by people with motor neuron disease in Australia: a prospective, observational consecutive cohort study

Abstract

Purpose: People with motor neuron sisease require adaptive equipment to enhance life quality. This study aimed to examine total and concurrent equipment items prescribed with phenotype consideration.

Methods: A prospective, observational consecutive cohort study was undertaken. Data regarding Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised, phenotype, symptom onset and Functional Independence Measure (inpatients only) was recorded. Equipment utilized was coded by therapist as: speech devices; transfer devices; mobility devices (including power wheelchairs); orthoses; activities of daily living equipment; assisted technology and home modification equipment.

Results: Two hundred and seventy-three people with motor neuron disease participated, mean age 67 years, mean amyotrophic Lateral Sclerosis Functional Rating Scale-Revised score 32, a moderate level of disability. Equipment items per participant ranged from 0 to 20, median 5. The electric lift recliner chair was the most commonly used equipment item, used by 51.2% of the cohort. There was a statistically significant difference in equipment use between flail leg and bulbar (Md 11, 3 items, respectively; p = .005), and flail leg and cervical phenotypes (Md 11, 3.5 items respectively; p = .009).

Conclusions: People with motor neuron disease have high equipment needs to optimize quality of life. Information regarding phenotype relative to equipment requirement, and most frequently prescribed equipment items can assist health-care providers anticipate equipment needs, burden and intensity for those with motor neuron disease.

Implications for rehabilitation

• People with motor neuron disease have high concurrent equipment needs.

• Electric recliner lift chairs are the most frequently prescribed equipment item by those with motor neuron disease.

• There is variation in concurrent equipment needs relative to motor neuron disease phenotype.

Keywords:

• ALS
• amyotrophic lateral sclerosis
• MND
• assistive technology

Acknowledgements

The authors would like to thank the occupational therapists, physiotherapists, speech pathologists, clinic nurse Anna Smith, and neurologist Dr Susan Mathers who assisted with the data collection, and the clinic manager Maryanne McPhee who facilitated the process.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.