Cochrane decision aids for people facing health treatment or screening decisions

This reference is a good one. Don’t be scared by all the stats – just scroll down to the plain English version if you can’t face grappling with them.

I now have a name for at least part of what I have been suffering from. No, not breast cancer, but: “decisional conflict related to being uninformed.”

(Sorry about the capitals, something has gone wrong with the formatting and I can’t find how to correct it).

Even stars explode

Updated review published today on The Cochrane Library: Decision aids for people facing health treatment or screening decisions

http://bit.ly/LhRFop

Citation: Stacey D, Légaré F, Col NF, Bennett CL, Barry MJ, Eden KB, Holmes-Rovner M, Llewellyn-Thomas H, Lyddiatt A, Thomson R, Trevena L, Wu JHC. Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews 2014 , Issue 1 . Art. No.: CD001431. DOI: 10.1002/14651858.CD001431.pub4

Now 115 included studies, nearly 35,000 participants, showing decision aids improve people’s knowledge, help them feel more informed, participate more in decision making.

The Summary includes, ‘ Decision aids reduce the choice of prostate specific antigen (psa) testing and elective surgery when patients consider other options’.

My comment: the harms and lack of benefit of breast cancer screening have brought about calls for a fresh look at cost and effectiveness.

It seems to me that men with raised psa levels are…

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Screening inquiry launched, plus ‘Breast Cancer Screening – what we still don’t know’ – H.G. Welch

More on overdiagnosis and overtreatment. The link to the article by Welch is worth following for an American perspective. I am getting to know the names of the key people in the overdiagnosis field, and have been in touch with many of them. I will be writing to the Commons Select Committee.

Even stars explode

On 17 December 2013, MPs launched an inquiry into the scientific merits of national health screening programmes and whether calls for health screening to be extended to cover conditions such as prostate cancer, lung cancer and post-natal depression are based on solid science.

Chair of the Science and Technology Committee Andrew Miller MP stated:
“The NHS spends a significant amount of money on health screening and it is important that this is underpinned by good scientific evidence.
Thousands of women are screened for breast cancer every year and lives are saved as a result but there may also be women who undergo unnecessary treatment and surgery as a result of screening. Calls to extend screening to other conditions should ensure that there is good evidence that the screening would be effective.
We will be examining the evidence base behind the decisions on which illnesses to screen for and will be…

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Windmills of my mind

windmills

Like a tunnel that you follow
To a tunnel of its own
Down a hollow to a cavern
Where the sun has never shone,
Like a door that keeps revolving
In a half forgotten dream,
Or the ripples from a pebble
Someone tosses in a stream

The picture for this post was nearly a hamster on a wheel, and that might actually be more appropriate. But as I was out for a walk this morning, I remembered this song, and looked up the lyrics when I came home. Wikipedia also tells me that the composer was French and the French lyrics are entitled, beautifully, “Les moulins de mon coeur”. I’m not quite pretentious enough to put up a French title (though it was a close-run thing).

I really wanted to post a tranquil rural windmill picture. But I had to choose an image which conveyed something harsher, grinding, maybe with grating mechanical noises. Because what goes round and round in my mind is:

I want an apology. I want an apology. I want an apology. I want an apology. I want an apology ——-

I have written twice to the NHS Breast Screening programme telling my story, and asking if they think it was ethical to send me (without any warning or caveats) an information leaflet which they knew was not fit for purpose while they were working on the new one. They have replied (but namelessly, no signature or name on the end of the email), explaining how complex it is to produce a new accessible leaflet and check the information. They haven’t responded to the bit about ethics.

They are right – it is very complicated to work out what is good information. But can they not say SORRY?

B thinks they probably can’t; because saying sorry would be to admit some liability or responsibility (although I have told them I would never sue). In any case, if you are director of the screening programme – or even if you are an employee whose job it is to answer the emails sent in by angry women – you probably believe that the screening programme does more good than harm. At least I hope you do, otherwise the job must be soul-destroying.

I can tell them what I want them to say.

SORRY that we caught you at the wrong time, and that you had to be one of the last women to receive that old leaflet.

SORRY that as a result of screening, you are experiencing such ongoing distress.

SORRY that the screening programme turned you into a cancer patient, when there was far more chance that you did not need to be one than that the cancer we found would kill you.

SORRY that you had to take such an impossible decision about whether to accept treatment or not. And that you are having such difficulty living with that decision.

SORRY that the suggestion (on the leaflet you received) that early diagnosis might help you to avoid a mastectomy was not true.

But most of all, SORRY that you feel you have been fooled. That we put you in a position where you could not make an informed choice about whether to go for screening or not.

So that you could have avoided all of the above.

Today I have decided that I will never, never go for a monitoring or screening mammogram again. I want my surgeon to examine me, and I will examine myself. If either of us is concerned by symptoms which actually present, I will go for diagnostic mammograms, u/s, biopsies – the lot, of course. But I never again want anyone to go looking for “inconsequential disease” (see, they even have a term for it).

Of course the disease might have consequences. But what the figures tell me is that if we catch a cancer – the boring kind I’ve had – a little bit later, almost certainly, these days, it can be treated. That’s the type I’m most likely to get if I get any more. And it’s the type that the screening programme is most likely to pick up! No thanks.

There’s a very, very small chance, of course, that screening might pick up an aggressive, hard-to-treat cancer. But you see, at the moment, I’m actually feeling I would trade in a few years of my life not to re-visit the tortured dilemma I have faced this year.

That’s what the screening programme has done to me.