LEAP-MS

Lifestyle, Exercise and Activity Package for people with Multiple Sclerosis.

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.

Barriers

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.

Personalising interventions

Secondly, we will 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

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.

Study status

Phase 1: Closed to recruitment

Phase 2: In set-up

The LEAP-MS study intervention is currently being developed and we are preparing for the feasibility study.

Results

Analysing the questionnaires that people who took part completed at the beginning, middle and end of the study we found that half-way through the study (at 3 months), 12 participants (75%) reported improvements in how they went about their routine daily activities after using the LEAP-MS intervention (the website and meeting with their physiotherapist).  This means that most people taking part experienced some positive change in their ability to do day – day activities.

The questionnaires showed that most people taking part reported at least some physical improvements.  The questionnaire scores also showed improvements in the impact fatigue was having on peoples’ lives and how they were feeling emotionally.

The final questionnaires, that people took at the end of the study (at six months) demonstrated that some of these positive changes had been maintained.

This study was not designed in such a way as to be able to statistically quantify this improvement, but we do know from these initial questionnaire results that it would be worth going on to study the intervention in a larger trial.

What people said about taking part in LEAP-MS

From talking to people who took part in the LEAP-MS study we know that most people who used it tried a range of new physical activities and increased the amount of physical activity they did.

Most people who tried different activities and did more physical activity than normal found benefits in doing this – either improvements in their MS symptoms or minor, but significant improvements in what they could do day to day. For example, one person found they could sit forward and reach for things more easily by the end of the study. Another felt their balance had improved and they were now able to put their shoes and socks on while standing up.

Another person taking part found they could now exercise for 45 minutes at a time.  At the beginning of the study, they could only manage 10 minutes of exercise.

Almost everyone who took part found the LEAP-MS website easy to use or found it easy to use once they were shown how to use it.  Two people needed some help from family members to use the website and to meet with their physiotherapist online.

People who took part appreciated that the LEAP-MS website had a large library of activities to choose from.  Not everybody liked every activity, but most people recognised that different people like to do different activities – so having lots of different things to choose from is important.  Some people have told us about additional activities they would like added to the website.

The website had functions to enable people to set goals and log activities they had done. These functions weren’t important to everyone, but most people thought they were important to have.  These functions didn’t always work as well as we wanted them to.  People living with MS who took part in the study gave us suggestions about how we could improve that area of the website in the future.

Most people living with MS who took part in the study found the coaching sessions with their physiotherapist helpful.  They liked being able to discuss with a physiotherapist their choice of activities and

Some people were motivated by seeing a physiotherapist because they recognised they needed someone to keep them on track with their activity plans. Other people who took part felt very independent and once they had met with their physiotherapist a couple of times and had formulated a plan, they were happy to carry on, on their own.

Not everyone liked the intervention, however.  A few people thought their physiotherapist would be more directing, rather than supporting them to make choices and decisions for themselves. Two people wanted the website to be more developed than we were able to achieve at this stage of the research. We have listened to their feedback and will put their ideas into action if we achieve future funding.

Publications

We have reported the study journey (particularly how we developed LEAP-MS) and the findings from the questionnaires in two journal articles. These articles are aimed at the academic community – in the hope they will influence other research in this area. If you would like to read them too, you can access them in full or in summary here:

• A web-based life-style, exercise and activity intervention for people with progressive multiple sclerosis results of a single-arm feasibility study. Multiple Sclerosis and Related Disorders, article number: 103388. (10.1016/j.msard.2021.103388)
• A web-based physical activity intervention for people with progressive Multiple Sclerosis: application of consensus-based intervention development guidance. BMJ Open 11(3), article number: e045378. (10.1136/bmjopen-2020-045378)