Evaluating a novel cervical orthosis, the Sheffield Support Snood, in patients with amyotrophic lateral sclerosis/motor neuron disease with neck weakness

Abstract

Current practice and guidelines recommend the use of neck orthoses for people with amyotrophic lateral sclerosis (ALS) to compensate for neck weakness and to provide surrogate neck control. However, available options are frequently described by patients as restrictive and unsuitable and there was a need for a new device that addressed the needs of people with ALS. This project utilized a co-design process to develop a new neck orthosis that was more flexible yet supportive. Following development of a prototype device, a mixed methods cohort study was undertaken with patients and carers, in order to evaluate the new orthosis. Twenty-six patients were recruited to the study, with 20 of these completing all phases of data collection. Participants described the impact of neck weakness on their life and limitations of existing supports. Evaluation of the new orthosis identified key beneficial features: notably, increased support while providing a greater range of movement, flexibility of use, and improved appearance and comfort. In conclusion, the results of this evaluation highlight the value of this alternative option for people with ALS, and potentially other patient groups who require a neck orthosis.

Key words:

• Amyotrophic lateral sclerosis
• cervical orthosis
• co-design
• head drop
• motor neuron disease
• neck orthosis
• neck support
• neck weakness

Acknowledgements

The MND Association care centre network recruited volunteers to join the design process and also assisted in recruiting to the evaluation phase.

We would like to thank the patients and their carers who volunteered to try the new orthosis, and who gave up their valuable time to provide us with their assessments and detailed feedback.

Declaration of interest:This project was funded by the National Institute for Health Research (Innovation for Invention Programme). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the i4i programme, NIHR, NHS or the Department of Health.

Supplementary material for this article is available

online at http://dx.doi.org/10.3109/21678421.2016.1148170