Neck weakness in individuals with motor neurone disease: an insight into head support

Abstract

Background/Aims Neck weakness and head drop can occur in individuals with motor neurone disease, further contributing to disability and lower quality of life. The aims of this study were to explore the characteristics of neck weakness in motor neurone disease and the different types of head support used by patients. Methods A cross-sectional study was performed, where 33 participants with motor neurone disease-related neck weakness answered a 17-item questionnaire. The questions covered their neck weakness and the types of head support they used at the time. Results All participants reported that their quality of life was negatively impacted by their neck weakness. Of the participants, 51.5% reported forward head drop and 42.4% reported that their head dropped both forward and to the side. The most common head support strategy was tilting their chair backwards, followed by the soft neck collar and a rigid collar (Aspen Vista). The majority used either two or three head support strategies in a given day. A total of 26 participants used neck collars, with 11 requiring modifications to their neck collars and 13 reporting not being able to use their neck collar for as long as they wished. Conclusions This study identified the negative impact that neck weakness has on the quality of life for people living with motor neurone disease, and how varied people’s experiences are of living with and attempting to manage this symptom. This is a complex symptom for allied health professionals to manage and an individualised approach is required.