NMS-MND
Research type
Research Study
Full title
Holistic Assessment of Non-Motor Symptoms for People with Motor Neuron Disease
IRAS ID
285130
Contact name
Suvankar Pal
Contact email
Sponsor organisation
The University Of Edinburgh
Duration of Study in the UK
0 years, 2 months, 31 days
Research summary
Research Summary:
Non-motor symptoms are often not adequately addressed in clinical management and research in MND, with the focus on motor symptoms such as breathing, muscle weakness, swallowing and speech. Non-motor symptoms are issues such as disturbed sleep, problematic saliva, pain, low mood, anxiety, fatigue, cognitive impairment, sexual dysfunction, behavioural change and gastrointestinal issues. These symptoms do not affect everyone with MND, and some people may experience them more often than other people may.
We would like to find out more about people with MND’s experiences of these non-motor symptoms and how much of an impact these issues have on their lives. To do this we will invite people with MND on the Scottish MND register (CARE-MND) who have consented to hear about current research projects, to complete a short questionnaire.Participants will be invited to complete a novel questionnaire. This questionnaire can be completed online or on paper, depending on preference. We expect this questionnaire to take around 30 minutes for people to complete. In addition, we will ask participants to complete a validated questionnaire use to assess physical symptoms in people with MND, the ALS-FRS (R) (Amyotrophic Lateral Sclerosis Rating Scale) that will take 10-15 minutes.
Lay summary of study results: Motor neuron disease (MND) affects a person’s muscles, and changes how a person is able to move their body. Non-motor symptoms are issues that can also occur for people with MND. These include problems such as worsened mental health, poor sleep, changes in thinking and behaviour, fatigue, sexual problems, gastrointestinal issues, problematic saliva, and pain. We wanted to understand how often these kinds of symptoms affect people with MND.
The aim of this study was to find out how many people with MND in our sample 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 co-occur. 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.REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
21/YH/0226
Date of REC Opinion
19 Oct 2021
REC opinion
Further Information Favourable Opinion