Published:

The patient perspective on improving day-to-day tasks with Multiple Sclerosis

Researcher: Robert Joyce and Dr Sinéad Hynes, NUI Galway

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The problem

People with Multiple Sclerosis (MS) can experience cognitive difficulties, making it harder to focus on and carry out day-to-day activities. This can lead to them feeling tired, frustrated and irritable and attempting fewer tasks.

The project

With HRB funding, a team at NUI Galway, led by Dr Sinéad Hynes, is trialling a cognitive occupation-based program for people with MS (COB-MS), where they work with an occupational therapist on an eight-session programme focused on various techniques such as setting goals and pacing to help them accomplish day-to-day tasks. Importantly, a patient-researcher (Robert Joyce) was involved from the outset, to ensure the study incorporates the needs of people with MS.

The outcomes:

Patient-researcher Robert Joyce, who has MS, has worked on the project from the start in the first role of its kind at NUI Galway 

  • By having patient input, the project has been designed to work for people with MS
  • The trial recruited many participants through Robert Joyce telling his own story of living with MS in local and national media including the Irish Independent and the Farmer’s Journal
  • The manual used by participants in the project was specifically made to suit the sensory and mobility requirements of people with MS
  • While the trial is ongoing, participants have anecdotally reported success in completing tasks after they practiced the techniques in the study
  • Robert Joyce, Dr Sinéad Hynes and Dr Christopher Dwyer have published an Open Letter in HRB Open Research about the experience and impact of Patient, Public and Carer Involvement (PPI) in research on the project.

Robert Joyce, patient-researcher at NUI Galway, says:

“It is critical that patients have a voice in shaping research. Only by having that day-to-day lived experience of a condition can you understand what the potential obstacles are in a research project. One example in this case was the manual describing the techniques in the intervention, which was bound in a way that people with MS could find difficult to use. Because I have MS, I could see that, so we changed the design and it was not the obstacle it could have been. I see myself as a bridge between the patient community and the researchers, helping to ensure that they understand each other’s needs. And while the study is ongoing, it’s heartening to hear from some participants that they are feeling a tangible benefit of the intervention.”

'The patient perspective on improving day-to-day tasks with Multiple Sclerosis', is part of a wider collection of success stories across four themes from this year's annual Health Research in Action. Download the full publication