New research into non-motor symptoms in MND
Jan 2024: A survey of people with MND across Scotland has revealed the extent and range of the non-movement-related symptoms that they experience.
It is well known that MND affects a person’s muscles, and changes how a person is able to move their body. Problems relating to movement can be called "motor symptoms". However, it is less well know that people with MND can also experience "non-motor symptoms". These include problems such as worsened mental health, poor sleep, changes in thinking and behaviour, fatigue, sexual problems, gastrointestinal issues, problematic saliva, and pain.
In this research, a team from the University of Edinburgh wanted to understand how often these kinds of symptoms affect people with MND. Former PhD student Emily Beswick, with Prof Suvankar Pal and others, aimed to find out how many people with MND report non-motor symptoms, and how often these symptoms occur. The study also explored how important people with MND think it is for future clinical trials to consider non-motor symptoms, and if they are happy with how often these symptoms are currently discussed in clinical appointments.
The study involved sending a questionnaire to all people living with MND in Scotland who said that they would be interested in participating in research on the Scottish MND Register (CARE-MND). 120 people responded (approximately 28% of the total number of people living with MND in Scotland and 39% of people invited).
99% of participants reported at least one non-motor symptom, with 72% reporting five or more. The most frequently reported symptoms were pain and fatigue (affecting 76% of participants). 73% of respondents were happy with how often they discussed non-motor symptoms at their clinical appointments. 80% of participants reported that they believed it was also important to look at how a new drug tested in a clinical trial might affect non-motor symptoms.
The overwhelming majority of people with MND report experiencing non-motor symptoms and these frequently occur together. Pain, fatigue, gastrointestinal issues, sleep, mood, anxiety, problematic saliva, apathy, emotional lability, cognitive complaints, and sexual dysfunction are common. People with MND who had more physical problems and those who were long survivors (diagnosed over seven years ago) were more likely to report more non-motor symptoms. Non-motor symptoms occur often and are a priority for people with MND in clinical care and trial design.
The study was published in the scientific journal Brain Communications.
It was funded by the Euan MacDonald Centre and the Anne Rowling Regenerative Neurology Clinic.
Related links
Read the scientific article: Non-motor symptoms in motor neuron disease: prevalence, assessment and impact. Beswick et al, Brain Communications, Volume 6, Issue 1, 2024, fcad336, DOI: 10.1093/braincomms/fcad336
Professor Suvankar Pal's profile