Effective clinical management of motor neuron disease (MND) relies on timely introduction of interventions. To support this, researchers at the University of Sheffield have developed predictive computer models that estimate the timing of specific disease milestones for individual patients.
This study investigates the integration of these personalised predictions into clinical practice. It seeks to gather the views of healthcare professionals on the practicalities of using such models, the most effective methods for communicating risk and timing to patients, and the identification of any barriers to implementing predictive care models within standard MND multidisciplinary care.
How will this study help people with and affected by MND now and/or in the future?
The researchers hope that this study will help to inform how healthcare professionals communicate about MND and help people with MND and their families plan for the future.
What does taking part involve?
There are several ways to take part in the study.
People living with MND and caregivers can choose to take part in an online survey to share their opinions. Hard copies can be shared if this is preferred to completing online. Healthcare professionals can also take part in an online survey. The surveys should take between 10 and 20 minutes to complete.
People living with MND and caregivers can also choose to attend a 60-minute online interview with the researchers, where they will discuss their thoughts on the personalised predictions and how this information should be shared with people with MND. Healthcare professionals can also choose to join a 60-minute online focus group alongside other healthcare professionals.
Who can take part?
People living with MND
Current or bereaved (within the last 5 years) informal caregivers
Healthcare professionals involved in the care of people living with MND
All participants must be over the age of 18 and able to understand written and spoken English.
Further information
Email us for further information on PACE-MND, including how to participate: Anne Rowling Clinic Research Enquiries.
MND Association PACE-MND research page (external website)
