The related issues of overtesting, overdiagnosis and overtreatment seem to have reached something of a tipping point in recent times.
It seems that almost every day, there is some new development in the field:
• another conference (this week Missing the Target, when practitioners harm more than heal, while this one on preventing overdiagnosis is calling for papers).
• a new book (eg How we do harm: a doctor breaks ranks about being sick in America).
• another journal article (eg from JAMA: Diagnostic Imaging Studies and Associated Radiation Exposure for Patients).
• or a media article (eg a report from Sue Dunlevy in The Weekend Australian questioning the merits of spending more on healthcare).
I recently wrapped some of the recent developments for this article for Inside Story, Overtested, overtreated and over here.
Other developments not covered in that wrap include:
• USA Today reviews recent developments from the less is more push.
• A TEDMED talk by Ivan Oransky, the executive editor of Reuters Health, reported by The Atlantic as The preposterous epidemic of pre-diseases, has generated some interesting discussion around the merits or otherwise of labelling people “previvors”, which by one definition is: individuals who are survivors of a predisposition to cancer but who haven’t had the disease.
• The New York Times on When Costly Medical Care Just Adds to the Pain.
• The Reporting on Health blog is running a series of articles to help health reporters avoid disease mongering (an example of which has recently been highlighted in Australia around the marketing of concerns about low testosterone levels) and to generally be more questioning of claims about the benefits of interventions.
Perhaps a tipping point of sorts has been reached: that accepted wisdoms and cultural beliefs that “more healthcare is always better” are no longer so widely accepted or believed.
Or maybe it is just that the connections enabled by online publishing are bringing greater prominence to the issues, and are making it easier for people like me to join the dots?
Meanwhile, Alan Cassels, the Canadian author of a new book, Seeking Sickness: Medical Screening and the Misguided Hunt for Disease, questions some of the “accepted wisdoms” around screening in the article below.
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How perfectly healthy people are turned into patients
Alan Cassels writes:
What could possibly be wrong with having a mammogram? Or a PSA test for prostate cancer? Even a full body CT scan? Finding the signs of illness before it strikes you down is always the best course of action – isn’t it?
You might have similar thoughts when offered a routine screening test, ultimately believing that screening for illness before it happens can only do good.
So, you may be in for a shock, as I was, when I discovered how often medical screening has overpromised and under-delivered. And how frequently the “screen early, screen often” paradigm – including even simple blood tests to check for high cholesterol – can rapidly turn perfectly healthy people into patients.
Unnecessary care can be bad for your health: Prostate and breast cancer screening
The poster child for inappropriate and harmful screening is probably the full body CT scan, which is routinely promoted with a ‘better safe than sorry’ message that is compelling, but neither supported by independent experts or good science.
Here’s what not advertised: a full-body scan is pretty much guaranteed to find some kind of abnormality that likely won’t hurt you.
In a study in the medical journal Radiology of 1,000 symptom-free people who underwent full body CT scans eighty-six percent of patients had an abnormality detected. The average person had 2.8 abnormalities revealed by the CT scan – items which appeared unusual, but either disappeared on their own or were so slow-growing that they never went on to threaten the individual.
Even for screening programs that are well-studied, such as those for breast or prostate cancers, the chances of being saved by the test are often outweighed by the possibility that the individual will be hurt by the testing or possible treatments which follow.
Yet, since most of us know someone whose life has been ‘saved’ by a test, we submit.
The PSA test, which screens a man’s blood looking for risks of prostate cancer, might seem like a no brainer for many men, especially those who have lost brothers or a father to the disease. But it is very controversial, even with some experts saying they shouldn’t be done at all.
But what most of us aren’t going to hear is that when an individual has a high PSA score (which could be caused by many things), the doctor can’t tell if the patient has the slow growing-type of prostate cancer that the majority of men eventually get (and won’t die from), or the fast-growing type that can be quickly lethal.
Here’s the data from the most recent research: to save a single man dying from prostate cancer, 1,410 men need to be screened, and of those, 48 will undergo treatment (with chemotherapy, surgery or drugs). About 30 of the treated men will end up impotent or incontinent (a possible consequence of the treatment).
Screening can be a terribly difficult and emotional decision because many of us don’t think in terms of numbers like these. Medical screening falls under the spell of the “popularity paradox” where despite high levels of false positives for many tests (common in breast, lung and prostate cancer screening especially), people still rally behind them. We ask our friends and relatives to help raise money for ‘the cure’ and are cheerleaders for the message of early detection.
In the world of breast cancer screening, many of us know a woman who has dealt successfully with the disease, and are led to believe that early screening saved a life. The truth is that some women, even with screening, will die. And many women, without screening, will be treated successfully.
What’s often not factored into the decision-making process is the potential harm incurred from the many false positives, the subsequent radiation from repeated testing, and the pain and suffering from potential biopsies and treatment.
One of the most common side effects of medical screening – the wrenching psychological impact of telling someone they may have cancer when they don’t – is rarely taken into account. And it’s significant.
The latest research for breast cancer screening says that you’d have to give mammograms to 2,100 women aged 40 to 49 every two years for 11 years to save one life. In the interim, screening will result in almost 700 false positives (think more testing, more x-rays and investigations) and about 75 women will have an unnecessary biopsy.
Informed decision-making the best medicine
Some screening is harmful, but some can also be helpful, such as screening for colon or cervical cancer where there is evidence screening the right people at the right time can save lives. The principle here is that even when saving a life by screening seems the intuitive and right thing to do, it’s not a deal you should ever enter into without understanding the probabilities – your chances of being helped or hurt by the test.
Stories of lives saved may be compelling but they are rarely representative of the reality for most people who undergo screening.
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Alan Cassels: some bio
Alan Cassels is a drug policy researcher at the University of Victoria. He has spent the last 18 years studying how clinical research and experience on pharmaceuticals is translated for policy-makers, prescribers and consumers. He led a team of Canadian researchers to carry out the first ever study of Canadian newspaper coverage of new prescription drugs. (published in the Canadian Medical Association Journal in April 2003) and has frequently reported on consumer health issues for magazines, newspapers and the long-running CBC Radio program IDEAS. He is co-author, with Australian journalist Ray Moynihan of Selling Sickness: How the World’s Biggest Pharmaceutical Companies are Turning us All into Patients, about the role of the ethical drug industry in underwriting the creation and marketing of illness. His second book, The ABC’s of Disease Mongering: An Epidemic in 26 letters (Emdash Book Publishing, 2007) an illustrated verse-form, yet footnoted volume was described as “Dr. Seuss taking on an overmedicated and over-diagnosed culture.” Alan’s 3rd book Seeking Sickness: Medical Screening and the Misguided Hunt for Disease, about medicine’s “screen early, screen often” mentality that is capable of inflicting considerable harm on unwitting consumers was launched in May 2012. Alan Cassels has lectured in journalism schools in Canada, the US and Australia on the essentials of pharmaceutical reporting. His website www.alancassels.com is a place where “media and medicine meet.” Follow him on twitter at: @AKECassels
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• In the next Croakey post, Carol Bennett from the Consumers Health Forum will argue the need for better information for consumers and patients, to ensure true informed consent.
Thank you for this article, I wish it was on the front page of every newspaper in Australia. I’m one of the lucky ones who sensed a big fat rat almost 30 years ago when I was TOLD, along with most other women, that all women “must” have pap tests. Informed consent has never been respected in women’s cancer screening. I took myself off to the Medical Library and spoke to a couple of academics and have always declined screening, an informed decision, but the system has always made clear I apparently don’t have that right, I’m labelled “non-compliant, uneducated, silly, irresponsible, reckless” etc
The facts have always been hidden from women in favour of a screening story and that’s what it is, a story. Women who declined pap testing up until about 15 years ago where denied access to the Pill…this test is elective, legally and ethically, and has nothing to do with the Pill, but the medical profession was allowed to coerce women into pap testing to get the Pill. (along with unnecessary and potentially harmful routine pelvic and breast exams) Disgraceful…
It has been hard to watch the pain, worry/distress and damage caused by this program over the decades, including my younger sister who endured a excess cone biopsy after a false positive pap test.
Australian women are some of the most over-screened and over-treated in the world, yet no one says a word, our doctors are quiet and collecting target payments for pap testing. These payments are unethical IMO, as they create a possible conflict of interest. (women should be told about these payments at the very least)
Finland has had a 6-7 pap test program since the 1960s, 5 yearly from 30 to 60 and have both the lowest rates of this rare cancer in the world and they send far fewer women for colposcopy/biopsies. The lifetime risk of referral here for colposcopy/biopsy is a whopping 77% for a cancer with a 0.65% lifetime risk. (it’s rare, always was and was in natural decline before testing started)
There was never a need to harm and worry so many and now there is no excuse at all. I have always felt our “program” is protected, it suits many….not women.
The Netherlands also has evidence based testing, but will move with the evidence yet again and shortly introduce a new program, 5 hrHPV primary triage tests offered at ages 30,35,40,50 and 60 and only the roughly 5% who are HPV positive and at risk will be offered a 5 yearly pap test. Most women are HPV negative and they cannot benefit from pap testing, they will be offered the HPV primary testing program and there is a long overdue self-test option already in use, the Delphi Screener. (and being used in Singapore, Italy and elsewhere) This is more likely to save lives by identifying the small number at risk and by sparing HUGE numbers of women from a lifetime of unnecessary pap testing and the risk of potentially harmful over-treatment/excess biopsies. (cervical damage can lead to premature babies, miscarriages, c-sections, infertility etc)
Those HPV negative and no longer sexually active or confidently monogamous may choose to stop all further testing.
This is smarter testing…we basically spend millions to worry and harm women who are not even at risk from this rare cancer and we miss too many of these cancers with our inefficient excess…and we waste scarce health resources. Our program also shows a deep disrespect for the bodily privacy of women.
This should be a scandal, but still we delay…a panel has finally been formed to review our program, no report is due until 2014 and then women must wait for change…it seems like a stalling exercise to me, the evidence has been clear for many years, at the very least the program should immediately be wound back (5 yearly) and young women (under 25) should be excluded, this would contain some of the damage while we consider introducing HPV primary testing.
IMO, control of this program should be handed to an independent group (like the Nordic Cochrane Institute) for review so it can finally be focused on what’s best for women. The Netherlands has been able to keep their program current by asking experts for their “personal” opinion, not as a representative of a professional group, to keep self-interest out of the program. (as far as possible)
Even at this late stage we are still telling women they should have 2 yearly testing from teens to age 70, an absurd 26+ pap tests…this is bad medical advice. It’s high risk for no additional benefit over a 6-7 pap test program and no benefit at all for those under 30. Sadly, no country in the world has shown a benefit doing pap or HPV testing on those under 30. It is high risk for no benefit…the same very rare cases occur whether we screen or not, but screening condemns huge numbers to worry, fear and the risks posed by false positives and over-treatment. Young women produce the most false positives…the official Govt statement on HPV primary testing is IMO, also incomplete and misleading…IMO, carefully worded to keep women in the dark about the real significance of HPV primary testing – if you’re HPV negative then you’re not currently at risk, HPV positive and aged 30+ then you have a small chance of benefiting from a 5 yearly pap test. We only offer women HPV testing after “treatments”….why? Testing women for HPV first would rule most out of pap testing and over-treatment. (about 95% of those aged 30+)
Our breast screening program also ignores informed consent and IMO, operates outside proper ethical standards. It was only recently that a doctor bravely stepped forward to warn women about over-diagnosis, Breast Screen chose not to tell women. The benefits IMO, have always been inflated and the screening authority cherry-picks research and only presents those studies that promote the program, this is grossly unfair to women.
It’s time women were treated with some respect and these programs were pulled into line, we are not targets to be counted to achieve govt-set targets, political goals or to be used by vested interests to generate huge profits, this is playing with our health and lives…a double standard definitely applies, screening is “done” to women and offered to men and informed consent is respected in prostate screening. We’ve recently had discussions about sexism in politics, I believe a discussion should also focus on our medical profession and these programs.
I have also made an informed decision not to have breast screening. A huge thank you to the NCI for their excellent summary of all of the evidence, “The risks and benefits of mammograms” is at their website, my advice to women: do not rely on any information provided by our screening authorities and double check all recommendations provided by our doctors. We have many doctors who are also concerned about these programs, find one who’ll work with you and act in your best interests.
Thanks for a great article, I love to see real information about women’s cancer screening, it’s rare in this country.
HPV Today, Edition 24, sets out the new Dutch program.