The NEU's latest paper assesses how different levels of engagement with health information impacts adoption & maintenance of healthy lifestyle behaviours in people with MS.

lotus flower on a pond

Here at OMS HQ, we are always trying to think up new and imaginative ways for you to engage with the 7-step recovery program and the wider OMS Community.  Whether it be the ‘August Photography Showcase’, our recent ‘Refresh with OMS’ Webinar series or our new volunteer recruitment initiative, we want to hear from you. 

The reason for this is simple, we know that the more that someone engages with OMS and the 7-step recovery program, the more likely they are to make the all-important lifestyle changes, and then stick with them for the long run. This in turn gives them the very best opportunity to live a long, healthy and happy life, with MS. Of course, the added bonus is that we add to an ever-expanding community of wonderful OMSers from all around the globe!

HOLISM Study update

The team from the Neuroepidemiology Unit (NEU) at the University of Melbourne, founded by Prof. George Jelinek, and now in the very capable hands of Dr. Sandra Neate, have further picked apart this concept in their latest research project.  The article “Greater engagement with health information is associated with adoption and maintenance of healthy lifestyle behaviours in people with MS” has just been published in the ‘International Journal of Environmental Research and Public Health’, looking at the factors involved in people choosing to adopt the OMS program, and then maintaining those changes in the long-term.

This latest work comes from the “HOLISM” Study, the longitudinal observational study involving more than 2,400 people (n=2466), started in 2012 by the NEU.  As a brief reminder, “HOLISM” is an independent, self-reported questionnaire of people from 57 countries measuring lifestyle, medication and MS outcomes, with the aim of assessing how modifying factors in our lifestyle can alter the MS disease course over time.

Five years after the initial 100 question survey was carried out, 936 (38.6%) of the original participants then completed the follow-up survey. Those who completed both questionnaires were found generally to be well-educated, employed, married, had RRMS, less disability, less fatigue, lower BMI, led a healthier lifestyle (vitamin D and omega-3 use, exercised vigorously, meditate, did not smoke, did not consume meat or dairy) and had a higher level of resource engagement – more on this in a moment.

This is the first valuable piece of information, telling us that many people did not complete the second HOLISM survey (61.4%) and illustrating some of the factors that may have played a role.  This fits with previous studies showing that people with more severe MS symptoms (disability, fatigue, longer duration from diagnosis, and more likely progressive MS) often have less belief that making changes can actually help them,  with more perceived barriers to healthy behaviours and higher levels of depression.  All of these factors unfortunately conspire to prevent them from doing the things that could make a meaningful, positive and lasting difference to their lives, and is an area of MS research that is finally getting some much needed attention.

The participants were divided into 3 groups by their level of engagement with OMS resources: “none”, “medium” and “high”. Non-engagers were those that had never made use of any OMS resources, medium-level engagers had made use of the OMS website and/or Prof. Jelinek’s book, and high-level engagers had made use of the website, book and also attended one of our 5-day retreats.  

The researchers found that in terms of people choosing to adopt the OMS program, both medium and high levels of engagement with resources were positively associated.  So if you looked at the website and/or read the book, you were likely to give OMS a try.

But that association was strongest in those who had also attended a retreat. This makes sense of course. If you spend 5 days “living” the program, being taught the core elements, often by other people with MS who follow OMS, and connect with other people with a similar mindset and some of the same problems as you, then you are much more likely to invest in making those lifestyle changes than someone who perhaps skimmed over the website or looked at the book.

But what about maintaining those new behaviours, or in other words, keeping on the straight and narrow, and staying on the OMS program?

Well, 5 years later, those that had only read the information on the website and/or the book were generally not still following the health lifestyle behaviours, with no statistical association found between medium engagers and maintenance. There WAS a significant association found however in those who had made use of the website and/ or book AND been to a retreat. So the more you invested at the beginning of your OMS journey, the more likely you were to continue on that path.

Interestingly, this long-term adherence only applied to the dietary modifications: omega-3 and vitamin D supplements use and avoidance of dairy. It did not translate to exercise or meditation. This again fits with previous studies, showing that up to 80% of people with MS (pwMS) use supplements, and around 40% follow a specific diet. Changing physical activity levels can be very difficult however, and these findings indicate that a greater variety of resources are required, tailored to individual needs, in order for people to commit to them long-term.

There are many factors at play here, but generally speaking, it has been shown that making  dietary changes and taking supplements have less impact on your social and family life, and require less effort than physical behaviours such as exercise or meditation.  These aspects can be limited by disease symptoms, environment, time and financial commitments, a lack of support and motivation.

These results clearly demonstrate the value of the face to face workshop format in sharing the OMS message, empowering attendees to make and maintain the healthy changes to their lifestyle.  But a 5-day live-in retreat is simply not feasible for many people, in terms of the  financial and time commitment, or perhaps due to the limitations placed on them by their MS or even geography.  The last few months have also seen a unique challenge emerge in physically bringing people together, namely the COVID-19 pandemic.  At present it is simply not safe or feasible to have 40 people together in the same place, with some travelling long distances, and others with complex health needs and at significant risk from the virus.  

We have to come up with new ways of connecting people and sharing this vital message then, in safe, affordable and accessible formats. Work has already begun to achieve this goal, and the success of our recent webinar series is a prime example, reaching people in more than 50 countries around the world.  Nonetheless, significant challenges remain in recreating the unique qualities of the retreat through interactive web-based formats, especially in terms of giving people that vital sense of connectedness and the motivation to persevere that so often comes from true physical human interaction, but can be harder to replicate in the digital space.

What does this mean?

This latest piece of NEU research really is very important then.  It gives us further valuable insights into the factors that contribute to someone choosing to adopt the OMS 7-step program in the first place.  But possibly of even more significance, it highlights the resources needed to give them the very best chance of maintaining those new healthy behaviours for the long-term.  To be clear, we are not saying that if you haven’t been to a retreat, you won’t be able to stick with the program. Rather, the more ways you choose to engage with OMS, the greater the chance you have of it becoming completely embedded into your life.

This puts the responsibility very firmly back onto us at OMS, to raise more funds, push harder to engage with our global community in the ways that are most accessible, supportive and useful, in turn keeping you engaged and on track.   

It is a task that we do not shy away from, and we hope that all of the exciting new projects and initiatives over the coming weeks and months will demonstrate that commitment.

In the meantime, if you are standing at the ‘water’s edge’ of OMS at the moment, wondering if you should dip your toe, then don’t, just dive right in! 

Maybe sign up to your next local Circle meeting or a local yoga class, take on a fundraising challenge or volunteer your time to one of our new communication advisory groups.  Whichever way you choose to engage, I can promise you won’t regret it!

Follow the NEU on Facebook and Twitter.

Reference

https://www.mdpi.com/1660-4601/17/16/5935/pdf

NEU Research HOLISM study neuroepidemiology
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