Thursday, 30 January 2014

Hope buffering the Impact of MS

The Stress-Buffering Effects of Hope on Adjustment to Multiple Sclerosis.Madan S, Pakenham KI.Int J Behav Med. 2014 Jan 17. [Epub ahead of print]

BACKGROUND:Hope is an important resource for coping with chronic illness; however, the role of hope in adjusting to multiple sclerosis (MS) has been neglected, and the mechanisms by which hope exerts beneficial impacts are not well understood.
PURPOSE:This study aims to examine the direct and stress-moderating effects of dispositional hope and its components (agency and pathways) on adjustment to MS.
METHOD:A total of 296 people with MS completed questionnaires at time 1 at 12 months later and time 2. Focal predictors were stress, hope, agency and pathways, and the adjustment outcomes were anxiety, depression, positive affect, positive states of mind and life satisfaction.
RESULTS:Results of regression analyses showed that as predicted, greater hope was associated with better adjustment after controlling for the effects of time 1 adjustment and relevant demographics and illness variables. However, these direct effects of hope were subsumed by stress-buffering effects. Regarding the hope components, the beneficial impacts of agency emerged via a direct effects mechanism, whereas the effects of pathways were evidenced via a moderating mechanism.
CONCLUSION:Findings highlight hope as an important protective coping resource for coping with MS and accentuate the roles of both agency and pathways thinking and their different modes of influence in this process.
The Charities get criticized about their fund raising Slogans,
but Hope is a Core feature for all our activities.
What should the balance be between Hope and Realistic Expectations? Should Hope be dashed?

7 comments:

  1. I think hope is more important than any study could show. The darkest hours in the earliest days following my diagnosis were ones when hope seemed the one thing I didn't have. There was a sense of inevitability about getting worse and not better, ended up disabled etc. I've since learned I was wrong to be so hope-less. Whilst I understand the need to not look at a condition as serious as MS through rose tinted spectacles, we also need to be careful not to jolt too far the other way. Of course MS is serious - it impacts a supremely important organ, the brain. At its worse it can leave people in a condition so bad some would prefer to be dead. Researchers like Prof G, rightly desperate to change the mindset of NICE and other professionals, need to emphasise the awful potential impact of MS. However, MS is a hugely variable condition, perhaps one of the most. Saying I have MS is as meaningless in terms of what it means to me as saying I have cancer. It could be anything from an easily treated, superficial basal cell carcimona (one of the most mild forms of cancer) through to terminal, aggressive stage IV. It's the same with MS - it could be a minor irritation that never causes anything that could properly be called a disability through to something which quickly leaves you severely disabled. The latter part of that equation is often emphasised, the former ignored. It's easy to be anecdotal about these things - and there are plenty of stories of people with MS for 20+ years who are hardly affected at all but actually some hope and solace can be found in actual studies and data. Here's just a few that ought to give hope to those who, at least currently, aren't already past a point at which their suffering is too great:

    1. In one British Columbia populatioin study (apologies I no longer have the references for all of these but they have all come from proper, published studies - from the likes of Helen Tremlett etc) the median time to an EDSS of 6 was 27.9 years from diagnosis.

    2. In a similar one, the average age at which a single cane became necessary (i.e. EDSS) was 63.

    3. In an Olmstead county, U.S., population study the median time to an EDSS of 3 (i.e. any walking difficulty) was 23 years and 52 years before wheelchaire use. Note with all these median times, 50% of the population will do better, by definition.

    4. In a Swedish study, 39% of people studied from time of CIS were still begign at 20.2 years.

    5. On the MSBase registry of around 20,000 people, the median EDSS at 20 years is just marginally over 3.5 and 25% of people remain less than EDSS 2.

    6. In a Icelandic population study an incredible 69% of people with RRMS or SPMS were still between 0 and 3.5 EDSS at the 29 year point. This study covered the entire population so was without any hospital bias as some other studies show (i.e. you only see the worse people).

    Now, will many of you reading this blog be doing worse than the above? Yes, of course - these are just data and just as some will do better, others will do worse and the ones doing worse are most likely to spend a lot of time on blogs about MS etc. Also, many of those focus on EDSS which ignores cognitive issues which can be significant. That said, most of these pre-date DMTs full stop, let alone the newer, more effective DMTs.

    Why am I posting these stats? Because of the need for hope. If someone had shown me these and others the day I was diagnosed and said, look, MS can be terrible, there's no sugar coating that, but statistically, your odds are to not need a cane until your 60's and a wheelchair until your 80's, AND there's a lot of new treatments now and soon-to-be available then I think I might have avoided what became quite a deep depression at a time when my actual symptoms didn't warrant it. I'll proably come in for a slating from those who are doing worse than the above but if one or two newly diagnosed people read this and take some hope from it then I'll happily take the abuse from the others.

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  2. Well said, Anonymous - hope is a valuable commodity

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  3. I view hope as part of the 5 stages of grieving: Denial, Anger, Bargaining, Depression, Acceptance. Obviously hope would be a part of the acceptance of a diagnosis with a chronic, disabling disease. Remember, "Hope is not a dangerous thing, it is the best of things".

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  4. There is no hope if you have PPMS. Even if something is approved eventually, NICE et al won't be breaking their necks to get it out..

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  5. I remember reading (as a rationale for trying complementary therapies for MS) that 'uncertain hope is better than hopeless certainty'. I believe this.

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  6. “hope as an important protective coping resource” Hope has gotten me through some of the darkest days of my RRMS of 40 years. That hope is not armed with blinders. It is one which faces reality head on and, yet, allows me to think there could be something that can make me feel better, and that I just have to find it. Or, that someone, right now, is working on something which could be helpful. In other words, I never gave up completely.

    My MS is obviously not cured, and I’m variously dependent on a cane/rollator/ wheelchair. But, I believe my MS and certainly my quality of life would have been much worse had I not kept hoping and, and as a consequence, exploring solutions.

    At the most basic level, changes in lifestyle and nutrition have been beneficial. On a deeper level, I had to figure out what to do with my life after my forced retirement from a business career in my late thirties. Surprisingly, I turned to writing. Eventually, that satisfying and uplifting activity generated numerous published short stories and a few novels, as yet unpublished. More importantly, it gave me hope that a meaningful professional life had not ended with my retirement.

    However, the biggest surprise was yet to come, a surprise that in itself would affirm the role of hope. Years ago, I started a blog, Peace Be with You, to discuss my journey with MS. Unexpectedly, that blog segued from prose to poetry. Then, followers started showing up and saying things like, “With your words I see hope and understanding … At times, your words say what I’m feeling that I couldn’t find the words for.” Those followers then began asking if my poems were available in a book. I resisted until, one day, I realized that I might not be a poet with a capital P, but my poems were resonating with readers. Why not provide the book they were asking for?

    So, I’ve published a book of poetry, about which one of my reviewers said, “Facing hardship honestly but tempering it with hope, these healing poems light a path out of despair.” That book, called Peace on the Journey by Judith Mercado, is now listed on Amazon.com in paperback and Kindle editions.

    Yes, hope will remain my elixir as I journey through the MS highway.

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