Monday, 4 March 2013

QoL research: health retreats & lifestyle

#MSblog: Lifestyle modifications in MS: does it improve quality of life or not?

Hadgkiss et al. Health-related quality of life outcomes at 1 and 5 years after a residential retreat promoting lifestyle modification for people with multiple sclerosis. Neurol Sci. 2013 Feb;34(2):187-95. doi: 10.1007/s10072-012-0982-4.

Background: There is a strong body of evidence that supports the use of non-drug therapies in the management of people with multiple sclerosis (MS). A 5-day residential retreat for people with MS in Victoria, Australia, promotes lifestyle modification within a patient-centred model of care. 

Objective & methods: Analysis of the health-related quality of life (HRQOL) of the retreat participants was undertaken using the MSQOL-54, prior to attendance, 1 and 5 years after the retreat. 

Results: 274 retreat participants (71%) completed baseline questionnaires. Despite the usually progressive nature of MS, the cohort demonstrated clinically and statistically significant improvements in HRQOL. One year after attending the retreat, median improvements of 11.3% were observed in the overall quality of life domain (p < 0.001); 18.6% in the physical health composite (p < 0.001); and 11.8% in the mental health composite (p < 0.001). In the subset of 165 who had reached the 5-year time-point, there was a 19.5% median improvement in overall quality of life (p < 0.001); 17.8% in the physical health composite (p < 0.001) and 22.8% in the mental health composite (p < 0.001), compared to baseline. 

Conclusions: Attendance at a retreat promoting lifestyle modification for the integrated management of MS appears to have positive effects on short and medium-term HRQOL. Non-drug therapies should be considered as part of any comprehensive treatment plan for people with MS.


"My problem with this study is that it is observational and descriptive. MSers volunteering for a residential retreat, or could afford to spend a week at the retreat, may be very different to the average MSers who aren't prepared to volunteer for such a service. This is why we do randomised controlled trials to get rid of any biases that could explain these results. Therefore it is impossible to assess the utility of this service. The NHS and NICE would simple dismiss this study as meaningless if we tried to make a business case using this data for setting-up or using a similar service for MSers in the UK."

"The main lesson from this study is that if you want people to adopt your findings you need to well designed randomised controlled trials."

"This raises ethical issues about what type of research should or shouldn't be done."

3 comments:

  1. These people (and I participated in one of their surveys about lifestyle) make a business out of MS because one of the professors also happens to run (and most probably) profit from the retreat fees and books about the retreats, and seminars etc. So it is very unethical in my opinion. It's the same as if someone who has a stem cell clinic would be a prof and write a research paper urging people to do the treatment at his clinic. I eat healthily but my MS progresses nonetheless so go figure...

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  2. If this lifestyle retreat in Victoria is the one run by a certain cancer "guru" who claimed to have cured his cancer through lifestyle changes and set up his retreat and bookshops and business model based on his experiences I would be very wary as it has turned out that his miraculous cure from cancer has been thrown into doubt as it now appears he actually had TB and not the secondary cancer he claimed after all. Very sad to think of the many, may people who followed his ideas based on a false premise. I live in Victoria and have been following his story with some interest.

    Of course cancer and MS are different diseases and treatments are not the same but none the less it does go to show that has been no scientific credibility behind this thinking for cancer so why should we assume it is of benefit in MS? And at $3500 for a 10 day retreat at the Centre I would be wanting some results for my money.

    http://www.smh.com.au/national/cancer-experts-challenge-gawlers-cure-20111230-1pfns.html

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    Replies
    1. Yes, Gawler it the retreat they advertise for MS as well and Jelinek (the prof in the paper) is running it with others. Go figure, extremely dubious profiteering.

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