Title

Lifestyle, exercise and activity package for people living with progressive Multiple Sclerosis (LEAP-MS)

Principal / Lead investigator

• Prof Monica Busse, Cardiff University

Co-investigators / research team

• Dr Julie Latchem-Hastings (Cardiff University),
• Dr Freya Davies (PRIME, Cardiff University),
• Prof Adrian Edwards (PRIME, Cardiff University),
• Dr Rachel Lowe (Cardiff University),
• Dr Rebecca Playle (Cardiff University),
• Mrs Janine Bates (Cardiff University),
• Prof Neil Robertson (Cardiff University),
• Prof Fiona Wood (PRIME, Cardiff University),
• Dr Kate Button (Cardiff University),
• Prof Irena Spasic (PRIME, Computer Science and Informatics, Cardiff University),
• Mrs Rhian O’Halloran (Cardiff and Vale UHB),
• Dr Emma Tallantyre (Cardiff University),
• Ms Barbara Stensland (PPI representative),
• Prof Helen Dawes (Oxford Brookes),
• Prof Fiona Jones (Kingston and St Georges),
• Mr F Quevedo Fernandez (Cardiff University).

Type of study

Intervention development and feasibility study

Summary

Background to LEAP-MS

We know that many people with MS require support to remain physically active and often do not receive any or enough support. We know that this is particularly the case for People with Progressive MS (PwPMS) with moderate to severe disability – those who require assistance to mobilise (i.e using a stick, frame or wheelchair) and/or have other MS related symptoms such as fatigue and difficulties remembering.

 The LEAP-MS study is divided into three parts.

Qualitative study - Barriers and facilitators

Firstly, we will collect information about the barriers to and facilitators of physical activity that PwPMS experience, their current levels and type of physical activity and their perceptions of the role physical activity plays in managing MS symptoms from both them and their families – or people that support them. This will provide important information about why physical activity might be important for PwPMS, the challenges they face in doing physical activity or accessing it, and ways which they have found to overcome any barriers.

We will also collect information from physiotherapists, about their understanding of self-management and their needs for training about using self-management approaches with PwPMS.

Co-production - Personalising interventions

Secondly, we will co-design a personalised intervention to facilitate on-going physical activity for People with Progressive MS (PwPMS) and a training package about self-management with PwPMS for physiotherapists. The intervention and training package will be designed along with PwPMS, their families and healthcare professionals.

Feasibility study

Thirdly, we will

• test the feasibility of the intervention with a small group of PwPMS and physiotherapists and evaluate its usability
• deliver and evaluate the new training package for physiotherapists.

If the new intervention is considered to be feasible then we will apply for further funding to test the effectiveness and impact of the intervention.

Who is the study sponsor?

Cardiff University

Funder

Wellcome Trust ISSF Public Health Collaborative Awards (Cardiff University)

Total grant value

£293,296

How could this research potentially benefit patients?

We will gain a better understanding of what PwPMS and physiotherapists would like from an intervention to support PwPMS to be physically active.

We will develop a new web-based intervention (based on our findings and in collaboration with PwPMS) and test this with a small group of PwPMS to find out if it is usable and acceptable to PwPMS and Physiotherapists. 

Studying if this intervention functions well, if it helpful and usable by PwPMS will help us to understand how it could be improved and whether it should be trialled with a larger number of people in the future.

How the public / patients were involved in the development of the study design, and how they will be involved in the funded study?

The focus of the LEAP-MS study comes from research priorities set by people with multiple sclerosis during research consultation events run by the MS Society.

Two PPI representatives (one with previous experience of PPI work and one new to PPI role) contributed to the original funding application. 

The study has a PPI steering group who meet regularly and contribute to the ongoing delivery of the project.  

Co-production events will be held with people with MS, their families and health care professionals as part of the intervention development process.

People with multiple sclerosis, their families and health care professionals are taking part in the qualitative and feasibility study.

Start date

01/01/2018

End date

01/01/2021

Further information 

Project page on Centre for Trials Research: https://www.cardiff.ac.uk/centre-for-trials-research/research/studies-and-trials/view/leap-ms

Outputs generated (Reports / Publications / Impact)

Details to follow