The impact of neck weakness and experiences of using neck orthoses in people with motor neuron disease

Background: Patients with motor neurone disease experience weakness affecting muscles, including those of the neck. A review of available neck supports however concluded that they did not satisfy the needs of people with motor neurone disease and patients may often abandon use of an unsatisfactory device (1).

Objectives: The data presented here forms part of a wider research project that aims to produce a new neck orthosis. The aims of this part of the study were: 1) to examine perceptions of supports currently in use; and 2) to describe the impact of neck weakness on people living with motor neurone disease.

Methods: The study used a mixed method design, collecting quantitative data in the form of a questionnaire rating elements of design and usage, and qualitative data obtained during interviews exploring views of supports that had been tried, and how neck weakness affected every day functioning.

Results: Twenty six patients were recruited to the study. A range of supports were being used by participants, with foam collars and the Head Master the most frequently described. There was variation between participants regarding the supports that had been available to them. Orthoses were described as: being difficult to fit; providing little support; being overly restrictive; being uncomfortable; and being generally unsuitable for their needs. Some positive comments regarding supports were also outlined. Participants described how neck weakness impacted on eating and management of saliva, with some experiencing ongoing pain and discomfort. Also, patients and carers described how a lower eye level affected social interaction and activities of daily living. Other key areas of adverse impact were travelling and general mobility. Analysis of the scaled questionnaire data indicated that while participants reported that collars tended not to restrict breathing, there could be difficulties eating and drinking and there were reports of orthoses causing frustration. The appearance of the collars and ease of fitting was rated poorly, and patients generally disagreed that they were satisfied with the product.

Discussion and conclusion: The fi ndings highlight the seemingly often unplanned and variable provision of neck support for patients. Participants described the considerable impact on life that neck weakness had on everyday functioning, suggesting that neck support should be viewed as a priority area within care for people with MND. The limitations of currently available orthoses however hinder provision of suitable supports. Patients may be left with a choice of either using no orthosis or accepting a non-ideal device.