Epub ahead of print: Strupp et al. Feeling severely affected by Multiple Sclerosis: What does this mean? Palliat Med. 2011 Oct 31.
BACKGROUND: The situation for people feeling severely affected by MS remains largely unexamined and the term ‘severe MS’ is not clearly defined.
AIM: Our study describes this sub-group of patients utilizing exclusively a subjective inclusion criterion to analyse their reasons for feeling severely affected and document their perceived unmet needs.
DESIGN: A questionnaire with open- and closed-ended items addressing only patients feeling severely affected was sent out nationwide. Expanded Disability Status Score (EDSS) and subjectively severe affectedness were analysed for correlation. After dichotomizing both scores by a median split, the answers were allocated to these groups and tested for significant differences. Setting/participants: 1,110 questionnaires were analysed regarding the closed-ended questions while a subsample of 40% (n = 445) was analysed regarding the open-ended questions. Average age of participants was 51.87 years. Average time since diagnosis was 16.6 years. Main course of the disease was secondary progressive (35.5%).
RESULTS: The most frequently mentioned reasons for feeling severely affected were lack of mobility (56.4%) and fatigue (27.4%). Significant percentages for unmet needs were seen in the categories of funding services (31.0%), better social integration (24.7%) and medical support (25.2%). A significant correlation was observed between EDSS and subjectively felt affectedness (p ≤ 0.01). Motor disorders explained differences in patient needs behind a higher EDSS score; higher severe affectedness referred to other issues like dependency and immobility.
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| EDSS: expanded disability status scale |
CONCLUSIONS: EDSS is insufficient for usage as the sole instrument for measuring severe affectedness as it does not take into account other potential reasons. Complex patient needs necessitate multi-professional care as offered by palliative medicine.
“I agree with this study’s conclusions that EDSS is not up to the job of capturing everything about MS. I am all in favour of the wide adoption of PROMS (patient-related outcome measures).”
“What do you think?”
We don't really need any studies to inform us how grim this disease is. We know – we live with it every second of every day. It's the progressive nature of this disease which really sets it apart. Losing an arm in an accident – you have a loss and you learn to adapt. Within MS the losses just keep coming. I need to retain some dignity in the future (electric wheelchair will be my sign to get out). Stopping progression / encouraging some repair is all that we are asking for, but the 10-15 years horizon we are looking at is way too long for those visiting this blog today. The graphic re-confirms that pact that I made with myself – get out before your dignity goes. Surprisingly this keeps me pretty positive – knowing that I won't have to endure any of the stuff which comes with advanced MS.
The medical profession always makes a massive effort to keep patients alive where a disease has robbed the of everything e.g. advanced MS, but never seems to show the same massive effort to stop patients getting to this situation in the first place. Cruel, cruel disease – why is it always these types of disease where the medical profession fails so abysmally. Must be a law of nature – grimmer the disease, lesser chance of any help.
The physical and mental anguish of MS is very difficult to describe. The steady erosion of my physical abilities leads to a form of mental resignation, its almost a bereavement. To realise that I can no longer walk up or down a few steps, I struggle to pick something up from the ground that I have dropped while trying to keep my balance, suddenly realising I have to go to the loo and cannot hold on. These symptoms are just the tip of the iceberg. It starts off as a mild problem and it steadily gets worse and worse. The MS is always there and I know it. How can you measure what I have described? Does PROMS do this?
Please can we make 2012 the year when the only research which is undertaken is focused on stopping neuro-degeneration. MS research has become an ever expanding industry where every Tom, Dick and Harry can undertake some pointless research – in particular, research into quality of life (definitive answer- life is crap with MS), or coming up within another scale for assessing spasticity, balance or incontinence. To all MS researchers out there – WE WANT TO GET BETTER or NOT GET WORSE. If you research proposal doesn't fall into these categories, why the hell are you doing it. Interesting article in The Times today about survival rates for a range of cancers – huge improvements (now v 1970s). Can't MS research learn from cancer research? The funding going to cancer research will be massively more, but perhaps they are just focusing on tackling the disease process, not wasting it on woolly research which tells patients wht they already know.
Agree with comments above. MS researchers obsessed with measuring not curing. Why keep hastling MS sufferers with endless questionnaire. Look at Debbie Purdy – is it really that hard to imagine how we feel / to imagine our fears. The graphic illustrates how hopeless our situation is – horrible downward spiral with bed-bound / death from MS to look forward to. In my next life I will make sure I come back as a mass murder – MS has punished me enough in this life. I can't believe as we approach 2012 that those of us with this disease face such a horrible future and that the world of 21 century medicine can only watch from the sidelines.
Ditto above comments.Prof G – do neuros ever consider the impact of these sorts of graphics on someone with MS? I'm currently 4, but can see that my future isn't something to look forward to. There's a real sense of hopelessness with the disease – you've got MS, try and not worry to much, you won't ever play sport again, that retirement you were looking forward too won't ever materialise… I try to keep positive, but graphics such as these (and the related text), confirm that I'm just kidding myself!
EDSS isn't a good way to express the problems of MS patients.I have massive problems using my fingers / hands. Even more if there is the need to apply force to something.EDSS focuses too much on wheelchair / walking. Maybe this was good 20-30 years ago.I am on EDSS 4 but scaled to 80% disability rate by our relief organisation (I live in Germany).So this look like a big gap.And what about cognitive dysfunctions?
Re: "Do neuros ever consider the impact of these sorts of graphics on someone with MS?"Probably not enough; it is clear from your response that we need to be more sensitive. However, we also need to tell you how it is. Knowing about MS, and knowing about the prognosis, is essential to empowering you to make decisions about treatment, particularly "risky therapies". How can you balance the short risks of a therapy without knowing the potential long term gains? We started this blog to help empower you.
Re: "Please can we make 2012 the year when the only research which is undertaken is focused on stopping neuro-degeneration."In our research group every year is year dedicated to stopping neuro-degeneration. We are involved in screening drugs to treat progressive MS and we are trying to get a new trial design off the ground to speed up drug development.You can help by lobbying the MS Societies, NIHR, MRC, NIH and the other funding agencies to ring fence funding for this purpose.
Re: "EDSS isn't a good way to express the problems of MS patients."I agree, which is why I am so keen to adopt PROMS. The latter has the ability to look at all aspects of the disease. Again you as people with the disease have the power to demand this change.
"Knowing about MS, and knowing about the prognosis, is essential to empowering you to make decisions about treatment, particularly "risky therapies". How can you balance the short risks of a therapy without knowing the potential long term gains? We started this blog to help empower you."Prof G, I'm a great admirer of your work and dedication, but the statement above doesn't add up. I'm SPMS and c.EDSS 5, but there aren't any treatment options, not even any risk ones. Unfortutely, this blog does not empower me – I'm in the same situation as before the blogf started – yearly neuro appointments with no treatment options. I also want to honest with you – blogs don't empower and knowledge isn't power. Highly effective treatments for all MSers would be empowering.
Re: "Risky therapies" and "Highly effective treatments for all MSers would be empowering". I am not sure if you are aware that a trial of Natalizumab is about to start in SPMS; this may prove to be effective. In Europe and N. America and in some centres in the UK Mitoxantrone is used to treat SPMS. We use it at our centre if the person with SPMS is having superimposed relapses and/or has MRI evidence of active disease (Gadolinium enhancing lesions).