MS: retreat programs have major health benefits

Living Well Magazine Autumn 2015

A new study published in the Neurological Sciences journal has shown major improvements in the quality of life of people with Multiple Sclerosis (MS) who accessed self-help resources (a book and website) and/or attended an educational retreat program promoting the integration of healthy lifestyle practices.

The study was led by Professor George Jelinek and co-authors. Dr Jelinek is a professor in emergency medicine and author of two books on MS. He also facilitates the residential MS retreat programs at the Yarra Valley Living Centre.

The researchers note the growing evidence that lifestyle factors may improve quality of life, reduce relapse rates and slow the progression of MS.

The study of 2233 participants recruited online compared health-related quality of life, fatigue and depression risk between people who had, or had not, attended a Yarra Valley Living Centre week-long retreat, read the book ‘Overcoming Multiple Sclerosis’ or visited the Overcoming MS website (www. overcomingmultiplesclerosis.org).

The results were remarkable, showing people who attended a retreat program had physical-health quality of life scores 18 per cent higher (on a scale of 0 to 100), and mental-health quality of life scores 14 per cent higher, than those who did not attend.

Even more so, people who attended a retreat program, read the book and accessed the website had 19.5 and 15.6 better physical-health and mental-health quality of life scores, respectively, than those who did not attend.

The recent findings are part of the ongoing HOLISM study. A related study looked at the one and five year follow-up of people attending retreat programs at the Yarra Valley Living Centre. It showed retreat program attendees had highly significant improvements at one year in mental-health of about 12 per cent, physical-health 19 per cent and overall quality of life 11 per cent. At five years the benefit continued to accrue, with highly significant improvements in mental-health of about 23 per cent, physical-health 18 per cent and overall quality of life 20 per cent.

Professor Jelinek said the HOLISM study gave the researchers a further opportunity to compare health outcomes of people with MS coming to the retreat programs, with those who didn’t engage with self-help resources and show the differences in health outcomes.

The research team noted that there had been a “paradigm shift” in the management of chronic diseases, towards a patient-centred approach of self-management and prevention.

“People who are proactive in their health may achieve better outcomes than those more passive,” they said in the paper.

Indeed, the study’s depression outcomes were particularly striking, showing that depression risk among retreat program attendees (8.6 per cent) was around half that of the whole sample. Further analysis showed that no engagement with the retreat program, book or website was associated with tenfold higher odds of depression risk. Dr Jelinek said the findings, that people using the three resources had one-tenth the risk of depression, were “astonishing”.

“Roughly every second person with MS will have depression and to have such a dramatic fall in incidence of depression is really quite startling.” “No anti-depressant ever achieves that.”

Lack of engagement also found nearly threefold higher odds of clinically significant fatigue. This is a crucial issue for people with MS as 85 per cent report significant fatigue, and for most, it is the most disabling symptom they have.

Professor Jelinek said the findings on fatigue were encouraging because they showed that people were one third less likely to suffer fatigue, a significant problem for people with MS and one not successfully treated with medication, if they engaged in the three educational resources compared to those who did not.

In the study discussion, researchers noted the role of patient empowerment in dealing with MS.

“Rather than the effect of lifestyle modification itself, or perhaps additional to that effect, perceived benefits for health-related quality of life, depression and fatigue may arise from participants’ level of empowerment or self-efficacy,” they said.

“Empowerment is both a process and an outcome—‘‘a process to increase one’s ability to think critically and act autonomously…an outcome when an enhanced sense of self-efficacy occurs as a result of the process’’. “This is distinguished from a patient simply becoming more compliant.”

They added that actively engaged patients may also have a greater understanding of their condition, a better relationship with their doctor, be more likely to attend appointments and stick to their treatments – leading to better outcomes.

“In general, in medicine we significantly underestimate and underutilise people’s own resources in dealing with their illness,” Professor Jelinek said.

“We expect people to become compliant.”

He said many physicians were beginning to recognise the importance of a patient empowerment, but there was still room for improvement.

“We know for example that with heart disease, cardiologists are sometimes more likely to prescribe medications than talk to patients about factors such as exercise  and diet,” he said.

Retreat programs such as those run by the Yarra Valley Living Centre also gave people connectedness by providing a supportive environment, the benefits of which can be profound.

“The whole basis of the retreat program is that people become the captain of their own health ship,’’ he said.

For the full research article go to http://link.springer.com/article/10.1007/s10072-015-2089-1

Dr George Jelinek
Professor in Emergency Medicine

Dr George Jelinek was the first Professor of Emergency Medicine in Australasia and Founding Editor of the major international journal Emergency Medicine Australasia journal. Dr Jelinek has written and edited several major textbooks in Emergency Medicine, along with his two books ‘Overcoming Multiple Sclerosis: An Evidence-based Guide to Recovery’, and ‘Recovering from Multiple Sclerosis: Real Life Stories of Hope and Inspiration’. Amongst other accolades, his work for MS earned him the distinction of being a finalist for ‘Australian of the Year’ in 2008. Diagnosed with MS in 1999, Professor Jelinek has gone 15 years without relapse. He facilitates Overcoming MS retreat programs at the Gawler Cancer Foundation.