Monday, 28 January 2013

Measuring the subjective

Another post inspired by Radio 4....

I was listening to Women's Hour last week, and they were discussing heavy periods (something I thankfully do not suffer from) and the way they were classified as 'heavy'. Without wanting to freak out any male readers I may have, I feel compelled to explain this to make my point - a heavy period was measured by asking women to bring in tampons and pads and measuring the volume of menstruated fluid.

So why I am talking about a condition I don't have when I have plenty of my own to fill a whole blog?

Because now, the MMAS scale is used. It is a simple scale from 0 to 100 that has 6 domains: practical difficulties; social life; family life; work and daily routine; psychological well-being; and physical health. Diagnosis now takes into consideration the impact the symptoms have on these six domains, and it has been used to measure the effect on new treatments in clinical trials (see Prof. Gupta's paper here).

When Professor J. Gupta was being interviewed by Jenni Murray, he talked about how as clinicians, they realised the condition (heavy periods) "had an impact on every decision you made in your life". For most debilitating and complex long-term conditions, that applies.

Measuring a Chiari
It was a very refreshing approach to hear. As a patient with a Chiari malformation, I can identify with how these women used to be treated. Doctors focus on the scan, and the number of millimetres my cerebellum has descended. What they don't look at it the impact even one mm has on ME!
I have alluded to the impact on my life before on this blog (Life Impact Wheel), but my doctors have paid little attention to it.

If they took the same approach, and considered the impact on me and my life, I think they would have a different set of criteria for treating the condition, and in the end would be much more effective in treating me. Knowing my social life suffers as a result of a Chiari isn't going to help anyone find a cure for a Chiari, but it might help the doctor to consider more holistic treatment options such as counselling or occupational therapy to maximise what I can do. While I appreciate my doctors have spent many years becoming experts in my physical health, they are also in a (privileged) position to offer support to improve the other six domains (practical difficulties, social life, family life, work and daily routine, psychological well-being, and physical health) through their colleagues and other healthcare professionals.

Professor J. Gupta was spot on when he said that it "had an impact on every decision you made in your life" - if only other clinicians realised that and looked away from exact mathematical measurements of illnesses and saw value in the subjective measurements of quality of life . . .

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