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Dr Faustus and Mephistopheles

I received an email from the MS Register yesterday asking me take part in a survey. It was set up by the University of Exeter as part of a project funded by the MS Society. No doubt many of you received the same one.

I found the experience rather disturbing for, uncannily, I had been reflecting on such matters, including mortality, over the past months. The questionnaire sets out a number of long term health scenarios and asks the participant to consider trade-offs. For instance, would you consider six years of rude health as a worthwhile trade-off against ten years of debilitating illness?

I had recently been thinking about the way MS might affect the rest of my life. I am 62 with PPMS. Presently, I can do a number of physical activities and my powers of concentration are largely undiminished. I do suffer from some fatigue but only moderately so.

To me, the ability to enjoy reading, music, works of art and my surroundings mean more than the performance of physical functions. I can still go to concerts and the theatre, although the timing of the interval is crucial. Films are out of the question, as explained later. I hasten to add that that my views might change should I become more physically compromised. I can walk about half a mile with my rollator, on a good day, although the bane of my life is bladder urge incontinence. I do miss long walks and cycle rides, however. Since joining this Forum I am acutely aware that I am very, very lucky compared to many of you and I always admire how positive people are. This is not meant to be partonising.

Has anyone else taken part in the survey and what are your opinions? I am keen to know if any of you were discomfited by the experience, or was I taking it too seriously?

Best wishes

Alun

hi alun

at one time it would have left me upset but nowadays - nothing.

i am aware that i had relatively rude health for 50 years before my diagnosis so fair play.

carole

I haven’t received a survey request, but I’d probably accept Mephistopheles’ offer for 6 years of proper health. Being as I don’t actually believe in the devil / hell / demons / etc, I probably won’t be receiving such an offer.

Being the age of 49, having had MS now for 19 years, and being really quite badly disabled, I would gladly trade off health for longevity. In fact, I would happily make the trip to Switzerland if I became very much worse. I have considered this for myself and have spoken about it with my OH, family and friends so everyone knows my feelings on the subject.

I don’t consider this to be a gloomy subject, I can think about it quite cheerfully really. And knowing that if life became completely miserable, I have a way out is quite important to me.

Sue

Hi Alun

I think we would all respond to this differently depending on how MS is currently affecting us and our personality.

I’ve not received the questionnaire but my thoughts for what they’re worth are below.

At the moment I prefer the head in the sand approach and try to make the most of each day, taking pleasure in the small things e.g. having a cup of tea with a friend.

Ive no doubt that my response could well change in the future, who knows.

An interesting question but not one I want to consider at the moment.

Anne

Thank you all for your views and I am relieved that you take such a phlegmatic approach to life. I too try to enjoy every day and take comfort from small things, even though my condition is relatively benign. I don’t believe the subject is gloomy either but we, the British especially, would rather place mortality in a box and hide it up in the loft to gather dust.

I have written to the contact at the University of Exeter asking two main questions:

What are the ethical guidelines for such questionnaires and did they take into consideration that some participants might identify closely with some of the more debilitating conditions in the scenarios and be upset by the questions asked.

What is the purpose of the questionnaire and how they plan to use the results. This was not made clear in the email from MS Register.

I will update with the reply in due course.

It’s one of the strangest questionnaires that I have ever answered. No personal details were sought.

Best wishes

Alun

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To the lovely, patient people who have taken the time to follow my ramblings.

I did receive a reply from the University of Exeter about my concerns. The questionnaire was approved, as expected, by the university’s medical school ethics committee. Apparently the Time Trade Off technique is commonly used. This is like entering another world where humanity is left on the doorstep and all experience is quantified on a cold, convenient clinical scale.

The following extract from my reply expands on the above:

“The aim of this research is to enable the views of people with MS to be taken into account when decisions are made about the availability of MS interventions on the NHS. In order for treatments to be made available, they must be judged to be cost-effective. When we assess the cost-effectiveness of interventions, we often use Quality Adjusted Life Years (QALYs). QALYs are calculated by weighting each year of life according to its “quality”. The survey that you completed allows us to assign numerical values to different combinations of symptoms, which can be used to calculate QALYs. We had previously developed a new QALY measure for MS, called the MSIS-8D. In line with national guidance, the first version of the MSIS-8D was developed using a survey of the ‘general’ population. However, we were concerned that this did not reflect the views of people with MS, so we are repeating the survey with people with MS to produce an alternative version of the MSIS-8D.”

I looked up MSIS-8D and found the following paper submitted by the same team from the University of Exeter. I presume the questionnaire I completed will be used to improve the technique, as outlined above.

http://www.valueinhealthjournal.com/article/S1098-3015(15)05072-X/fulltext

I have read the parts that I could understand, as I am not familiar with sampling techniques.

I fully understand that there has to be some technique used by agencies such as NIHCE to evaluate whether a drug or treatment should be made available on the NHS. Nevertheless, I also now appreciate the full horror of such decision making based solely on statistics, entirely devoid of any comprehension of human suffering and discomfort. I don’t think I could work in such an environment.

When NIHCE finally evaluate Ocrelizumab my expectations will not be high.

Best wishes

Alun

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I went over to the MS Register page to see what I had missed and filled in a few questionnaires but was not offered that one. As others have said, I think responses to that sort of question will depend on temperament, how well or ill one feels, a recent squabble over the breakfast table about toast preferences, the weather, how one’s bowels are behaving, etc etc. With the first one dominating, most likely (closely followed by the last!)

Personally, I’m usually OK grappling with those sort of questions - at some level I think I feel happier looking the beast in the eye, so to speak, than trying (and failing) to make it go away by ignoring it and pretending those question do not exist or are not important. Ask me again, though, if a day comes when I’m fast running out of time and know it.

Alison

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Yep.

Aye, there’s the rub, isn’t it?

But if you don’t base it on something quantitative, funding decisions will tend to descend into a squalid who-shouts-loudest-and-which-ailments-are fashionable free-for-all. Come to think of it, they often already do! Think how much worse without some kind of quantitative framework within which at least some rational debate can happen, as a contributory factor in decision making, at least. But getting those quantitative measures right is key, and that is why is is probably a good thing for people to feed in what actually matters most to them in terms of quality of life etc.

Thank you for the link. Off to read it now.

Alison

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It’s not on the MS Register page Alison, you receive an invite by email. I got mine today.

One comment I would make is that the questionnaire hasn’t been designed with the average MS brain in mind. I certainly struggled to read, assimilate and retain the information. I’m not sure how reliable the responses will be.

They might find they need to rethink that one or then again they might take the responses at face value.

Anne

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i started to answer this questionnaire but soon gave up the will to live so i left it.

it serves them right.

carole x

Carol, It’s a pity you could not finish the survey as I would have been interested in your views. I found it took longer than the 20-25 minute guideline, and it was not an easy process on an emotional level. I wonder how many have abandoned the questionnaire half way through.

Anne, I take your point and I agree that it is questionable how much thought was given to the concentration abilities of participants. Ironic as it is obvious that another implicit trade-off in the survey is between emotional aspects/concentration levels and physical ailments.

Alison, what you say is true, of course. There are clearly conditions which attract more attention and funding for reasons beyond statistics, but I am not prepared to enter that debate. As you have just joined MS Register I wonder if you will receive an invite to complete the survey?

Alun

I have been on their list for a while, Alun. As AnnieB told me earlier on this thread, the survey you mentioned isn’t listed with their standard surveys on the website; it is by email invitation only, and I haven’t had one and am therefore having that mild ruffled-feather thing of having been left out of something and feeling faintly offended in an obscure way that I cannot put my finger on. :slight_smile:

Alison

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