It’s telling that a new report from the NSW Cancer Council called Roadblocks to Radiotherapy is using the power of patients’ stories to raise broader issues of concern about the inequitable access to radiotherapy that have been highlighted in literally dozens of reports and inquiries over the years. It will be interesting to see whether this report has more impact than all those that have gone before.

Radiation oncologist Professor Graeme Morgan has been a tireless advocate over many years for improved access to radiotherapy. Here is his analysis of the report – and a call to action:

“On Friday, NSW Stateline documented the personal traumas of cancer patients attempting to access grossly inadequate radiotherapy services provided by NSW Health.

In NSW, only 36% of cancer patients receive radiotherapy – well short of the benchmark of 52%. In June this year, the NSW Auditor-General criticised the inability of NSW Health to provide enough treatment machines and recommended it develop a 10 year Strategic Plan for Radiotherapy.

Although NSW Health now has a draft Plan, it fails to substantively tackle the lack of access and equity for treatment.

But the rest of Australia is little better with the national radiotherapy treatment rate at 38%, largely unchanged since 1999 – varying from 43% in Victoria to 31% in Western Australia.

How has this been allowed to happen? Well, it’s not due to a lack of reports or inquiries – in the 10 years from 1986 to 1996 over 50 reports had been published – an average of 5 per year.

In 2002, former Senator Peter Baume in “A Vision for Radiotherapy In Australia” recommended the formation of a central body – Radiation Oncology Australia  – for planning, quality and funding, and to overcome the fragmentation between different levels of government – sound familiar?

But after seven years, little has been achieved – still only 38% are being treated, but the number missing out has risen from 7,400 in 1999 to 16,200 in 2008, and as a result 2,500 premature deaths each year due to lack of radiotherapy.

In the last Federal budget, funding was announced for ten regional cancer centres. But this will be to no avail if money is not allocated through a central body for radiotherapy – as occurs with chemotherapy through the PBS.

During the election campaign, Rudd committed to taking over health care from the states if they could not show they were able to improve service delivery within 12 – 18 months. In the case of radiotherapy services, the States have had years to address the problem.

It’s time Rudd took over so that all cancer patients in Australia have equitable access to this essential cancer treatment.”

And now for an anecdote from Croakey:

Last year, when researching an article on cancer care in the bush for Australian Rural Doctor magazine, I heard many distressing stories about what the lack of radiotherapy services in the NT means for cancer patients there, especially for those from remote areas. I tried to imagine what it must be like for Aboriginal people from remote areas having to travel thousands of kilometres to Brisbane or Adelaide when they were unwell.

It became clear that the trauma of a cancer diagnosis, bad enough in the best of circumstances, is  magnified terribly in remote communities. It inevitably means a long, arduous journey into a foreign world far from home and kin. One doctor told me of  an Aboriginal man with a young family, who  had to spend several months living in a hostel in Adelaide while having radiotherapy without the support of a familiar face. It was his first trip outside the NT. He was not the only such patient the doctor had seen develop serious depression.

Others chose to go without treatment. The doctor told me of one such patient who had to be sent back to Darwin, to die without any family around her.

So there are plenty more powerful stories out there, many beyond NSW’s borders.

Some of the most critical comments have come from breast cancer consumer advocates - overtones, perhaps, of how prostate cancer consumer groups have sometimes reacted to evidence about the potential harms of prostate cancer screening.

Now Hazel Thornton, an independent advocate for quality in research and health care in the UK, and an Honorary Visiting Fellow, Department of Health Sciences, University of Leicester, gives us another perspective. Thornton describes herself as having being “given the breast cancer label” as the result of undergoing mammographic screening in 1991.

She writes:

“It is unsurprising that women find it hard to accept the facts from papers such as that by Stephen Morell and colleagues from the University of Sydney, and from robust systematic reviews of screening by mammography, or of breast self-examination.

Twenty years of being told what to do in paternalistic promotional literature extolling the benefits of ‘finding it early’, and being frightened by being told that ‘it could save your life’, are difficult to reverse.

As we see, many women’s support and information groups are still encouraging women to disbelieve good evidence of over-diagnosis and over-treatment. They assert that it is acceptable to accept unnecessary lumpectomies, mastectomies, radiotherapy, chemotherapy and hormonal treatments “just in case”.

Promotion and arguing that this utilitarian ethic is acceptable by those in authority is unethical and harmful: it denies those women who trust them proper respect and the right to be properly helped to make up their own minds by neutral presentation of balanced facts. For more information, see the English version leaflet that can be downloaded here.

For too long ‘The Facts’ that women have been provided, e.g. by the UK NHS Breast Screening Programme, have been short on fact, short on evidence-based data, but full of persuasion, estimates, promise of benefit – but silent about harms.

Until this year, that is, when they at last capitulated to exposure by a letter in The Times 19th February 2009 signed by 23 international experts, stating that their invitation leaflet was short on the truth and totally inadequate for the purpose of enabling women to make an informed decision about whether to attend.

Many women were and still are unaware that they have any choice in the matter – and, as Iona Heath entitled her paper in the BMJ: “It`s not wrong to say no!” (abstract is here)

Strenuous objection had repeatedly been made to informing invited women about pre-invasive cancers such as DCIS.

Yet, in the UK, on Sunday 1st November 2009 it was reported in The Sunday Times that “The Government has been forced to rewrite its advice on breast cancer screening after research showed that thousands of women have been misled into having unnecessary surgery.”

Joan Austoker (who is leading the revision of the invitation leaflet) “had admitted it had been a mistake to withhold information about unnecessary treatment for DCIS”. It was also reported that they “want to make sure that all the risks of breast screening are referred to in appropriate detail.”

Only this week, 17th November 2009, the US Preventive Task Force has published guidelines with the following recommendations: “The USPSTF recommends against routine screening mammography in women aged 40 to 49 years. The decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take into account patient context, including the patient’s values regarding specific benefits and harms. (Grade C recommendation)” .

Quite a turnaround!

This month in the UK, Sense about Science, addressing poor public understanding about what screening can and cannot do, launched a booklet: “Making Sense of Screening”.

Little by little, reason is beginning to prevail over blind belief!”

Andrew Penman, Chief Executive Officer of Cancer Council NSW, has been considering the complexities of the issues involved, and writes:

“As a public health program, screening for breast cancer makes sense.  It reduces mortality by 30%, the cost incurred in saving a life is competitive, it reduces the number and percentage of women who present with advanced and disfiguring lesions, and opens the door to less invasive treatment options.

Given the impact of breast cancer on population health expectancy and on the lives of women affected it is understandable that there is a large and voluble group of body protagonists for breast cancer screening and their cause is justified.

The evidence that screening reveals early cancers and initiates a treatment pathways in some women who would not have needed to endure it in the absence of screening is well proven.  The size of the effect at around 1 in 4in Australian research also appears a reasonable estimate.

On reflection, it is entirely consistent with our understanding that cancer incorporates an array of neoplasia with varying degrees of biological potential.  However, as our experience of the natural history of cancer has been framed predominantly around clinically significant disease, we are be less attuned to the behaviour of cancers with lesser biological potential.

Given that participation in breast cancer screening remains suboptimal, it is natural for the advocates for screening to be defensive when any evidence to counter the claim for benefit emerges, particularly when that evidence suggest that some participants will bear a burden as a result of screening without commensurate benefit.  But no population health intervention spreads benefit and burdens equally.  If this were a requirement, we would have no immunisation programs. In mammography screening at the very least those who are never diagnosed with cancer carry the burden of participation.

The use of the term “over diagnosis” to describe the detection of cancers with limited biological potential contributes to the defensiveness of advocates for screening.  It carries with it connotations of unnecessary and self-serving medical intervention, of overzealousness with attendant disregard for participant welfare.  Advocates are at pains to downplay any information that may further erode public confidence and participation.

In reality, the detection of cancers (or pre-cancers) with limited biological potential in inherent to the screening methods for all cancers.  It is therefore misleading to represent this as “over diagnosis” with its pejorative connotations, when such detection is part and parcel of the pathway to achieving benefit at the population level as well as at the individual level for the 3 out of 4 women diagnosed.

Screening detects cancers with limited biological potential, but the way the issue is framed affects the way we and participants react.  For participants, a proposition that any lesion detected has a 75% chance of progressing to life endangering cancer is different from a proposition that there is a 25% likelihood that any diagnosis is unnecessary.

Randomised trials of decision aids that deal dispassionately with risks and benefits of screening, including “over diagnosis”, show that women who use the aids are more informed, have less decisional conflict about screening, but continue to participate in screening at the same rate as the control group women.

Screening programs have been fairly criticised for providing inadequate information on the outcomes of screening for participants.  Fears about the dangers of full and unbiased information in the hands of consumers abounds among professionals, but are almost always misplaced, as in this case.   Advocates for screening should welcome the opportunity to engage women more closely in these issues.

The value of accepting and understanding “over diagnosis” lies in how we manage the future.  As more sensitive detection methods are evaluated, the likelihood that “over diagnosis” will increase and diminish population benefit at the margin needs to be assessed.

Research to discriminate between biological potential of cancers should assume a greater priority, and perhaps we should consider trials of more limited primary treatments.  But at the moment, population screening for breast cancer is a very good buy for cancer control, and women who have been given greater opportunity to consider these issues seem to agree that it’s a good buy for them too.”

Croakey has asked a range of individuals and groups to respond, and will post their comments as they land.

Sally Crossing, AM, Chair of Cancer Voices NSW, and member of the Breast Cancer Action Group NSW, comments:

“I was almost at a loss on how to respond to the latest study about the downsides of breast mammography screening.  So I asked an informal – lets ‘fess up – quite impromptu group of women of the screening age what they thought.  Five were “well’ women of the target age group, who screened happily and regularly, two others had been diagnosed – one detected early with no further disease, the other not so lucky.

This large sample, to a women, expressed concern about the findings of Morrell et al which have given rise to much media speculation and consequent public concern.  Where does this leave us now?, they asked.

Discussion continued with the fairly quick result that none of those still screening would stop because – and here’s the rub – we have absolutely no way of knowing whether our little early detected invasive tumour is a “goodie’ or a baddie’.  Not one of those women wanted to take such a risk and could not imagine anyone wittingly doing so.  The two women who had had breast cancer diagnoses had both been detected early – one was fine, and the other not.

The “downsiders” also refer to the “harms” of breast screening.  I know those of us who are breast cancer survivors may be called biased, but we feel pretty comfortable that the “harms” of having to wait for results, perhaps having a fine needle biopsy, even a small excision – are not very major in the big picture of knowing whether you have cancer or not.

Of course, having chemotherapy is a big “harm’ – and this is where it is so important for the research community to find out how to tell if one small lump needs full bore treatment, or not.  There are shades and degrees in this discussion that were not in the ambit of the downsiders.

I notice the journal article is mainly interested in outcomes as measured by death rates.  Here’s another thing to consider – we women are mainly interested in living as long and as well as possible.  We would like to see the endpoint being years of quality life, not numbers of deaths.  And thanks to early detection and more personalised and less toxic treatments, many of us are living much longer and better with our disease.

Of course people should be given good information about any possible risks and benefits of any medical intervention, and indeed of tests like screening.  It needs to be very well accepted information, expressed in terms that are completely understandable.  I don’t think we have reached that point with these findings.

Cancer consumer advocates are concerned that studies on possible over-diagnosis due to screening may be used to restrict publicly-funded screening and undermine the message that early detection saves lives.

Could we not direct the research money which supports these studies to the elephant in the room – finding out which detected cancers will progress and which won’t? Suspicion of over-diagnosis then would not be a researchable issue.

***

Professor Ian Olver, Chief Executive Officer Cancer Council Australia, writes:

“Breast screening has been estimated to reduce mortality from breast cancer in the target population of 50 to 69 year old women by up to 35%.

One of the downsides, though is that the screening test is far from perfect and can result in overdiagnosis. There are widely ranging estimates in the literature about the extent of overdiagnosis because population modelling includes the need to make assumptions which introduces variability.

However, there is no doubt that overdiagnosis does occur, against which the decrease in death has to be balanced.Individual women need to be informed about this.

Having said that, at the individual level we cannot distinguish which of the invasive cancers diagnosed at screening will have an indolent course and need not be treated.

The first consequence of overdiagnosis is that it points out the necessity for further research into being able to detect the slow growing from the more aggressive cancers so that we can identify a group that does not need treatment.

Until that occurs, women will be advised to have treatment which could save their lives.

The participation rate in breast screening is still not ideal and women are still encouraged to have a screening mammogram in the target age group to decrease breast cancer mortality as far as possible.

It would be counterproductive if women were dissuaded from participating in what has been a successful screening program simply because overdiagnosis occurs.”

***

Terry Slevin, Cancer Council WA, writes:

“The Sydney University study is important in helping us understand better the impact of breast cancer screening – but for many of us there are few surprises. They quantify an effect we’ve known about for some time that applies to all cancer screening – not just breast cancer.

But as the resources are more available for breast cancer than most other areas of cancer – we tend to get better data earlier on breast cancer issue compared to other forms of the disease.

In simple terms – when we go systematically looking for more cancer – we are pretty much bound to find it.  It has certainly happened in prostate cancer and is likely to happen in bowel cancer with the National – albeit somewhat half baked – Bowel Cancer Screening program, where not nearly enough people are invited to participate compared to the number we believe will benefit.

The question is – can we maximise the benefit of finding more cancer early so that the “price” of finding and unnecessarily treating cancers that would have otherwise cause no harm, is justified.

And Alex Barratt is right.

Yes – we need to come up with better, more accurate tests that more precisely discriminate between the cancers that need intervention and treatment and those that can be safely left alone.  And we need to better inform those invited to screening of the benefits AND the risks.

Key to this is advancing technologies and ensuring those are thoroughly evaluated before they are marketed.  Easier said than done when many in the biotech world see the next big cancer test is the holy grail for company profits.

Another way to swing the odds in our favour is being VERY careful who we capture in the screening net, and ensuring that everyone is very clear about what they are letting themselves in for.

And all of that is achieved if we keep talking about these issues based on the highest quality research which must be communicated in a clear and accessible manner.

We need to continually weigh up what benefits we get from cancer screening and what price we pay for those benefits.

These principles apply to breast cancer screening, bowel cancer screening and the testing that is done for prostate cancer.  It is important to understand that, based on the best available evidence, most health and medical experts who I deal with agree that the benefits substantially outweigh the costs for breast and bowel cancer screening, but that case has not been proven for prostate cancer screening.

But a nice way to think about it is from a punter’s point if view.

Image you had a cancer (of the x) test today.  The test is positive.  You then undergo further examination and the presence of cancer is confirmed.  You undergo treatment.  Probably surgery, radiotherapy and chemotherapy – and all that goes with them.

In 2019, you are sitting in your comfy lounge chair at home and someone tells you that you had a one in 50 chance of having had your life saved through having had your test.  And a 49 in 50 chance of having undergone all that unnecessarily.  What would you think?  Those are the numbers for prostate cancer.

What if it was one in 10 for having saved your life versus 9 in 10 being unnecessary?

Or one in 3 verses 2 in 3 ?

Where is the cut point for regret ?

Now come back to today.  What numbers from the above scenario would influence whether you do or don’t do the test.  And you are scheduled to do the test tomorrow….

Tough huh !  But those are the challenges we face – and a big part of that is how we better communicate that story to the people we ask to make that decision.  The people we invite to be screened.”

***

Sue Lockwood, Breast Cancer Action Group Vic, writes:

Alex Barratt has been pushing the need for better information and decision aids for women undergoing screening for years.  Of course she is right, we do need to make sure that women are properly informed.  But papers such as the one she has just published giving figures for the “overdiagnosis” of breast cancer do not help inform women.

This is a straight epidemiological study which has no relevance to decisions made by individual women.    A radiologist looking at a mammogram cannot tell whether the invasive cancer he or she can see is one which will develop into full blown cancer or not.  The surgeon who removes the lump and the pathologist  who dissects it cannot distinguish one lump from another except in broad brush terms, e.g.  oestrogen receptor positive or not, Her2 positive or not and the like.  Similarly the oncologist has no real information except for the examples mentioned above.  The chemotherapy women respond to is a bit like picking the winner in the Melbourne Cup.  The main difference is that you can keep trying different horses on different courses.

The other major flaw in Barratt’s argument relates to harms.  She sees unnecessary treatment, surgery, radiotherapy, chemotherapy , and the psychological trauma of a diagnosis of breast cancer as a harm.  Of course she is right, the treatment of breast cancer can be a harm if your breast cancer is not going to progress.  But as I have argued it is impossible at the moment to determine which women are being harmed and which women are getting the correct treatment..  Most women, although they find the treatment traumatic, would see it as taking the opportunity to do as much as possible  to rid their body of breast cancer.

I have argued for many years that the greatest harm is one where breast cancer is not diagnosed correctly or in a timely fashion.  This can lead to the greatest harm of all, DEATH.  This is obviously a disaster for the woman, but also for her family.  It is a trauma several orders of magnitude bigger than the trauma of initial  treatment for breast cancer.

This research should never have been funded.  It is a complete waste of precious funds.  It has not provided any information we did not know already.  Perhaps it made the data available more accurate, but is provides absolutely no information to inform women or  to help improve treatment outcomes.

We already deceive women by providing only 5 year survival statistics.  These figures give a biased view of survival as we know that women continue to die of breast cancer over the long term, 10, 20 years after their initial diagnosis.  We would be much better off looking at how women survive their breast cancers, how many actually go on the develop advanced breast cancer, how long they live and how well they live with  advanced disease.

Please let us focus on the important research, which provides the opportunity to improve the lives of women with breast cancer.

Thankfully, the debate has matured quite a bit since those days.  We are now hearing a somewhat more balanced discussion which pays greater attention to some of the complexities involved. One such complexity, as illustrated by a new study, is the potential for screening to lead to over-diagnosis and unnecessary treatment.

Alex Barratt, Associate Professor in the School of Public Health at the University of Sydney, and a co-author of the new study, reports on its findings:

“The idea of over-diagnosis of invasive breast cancer in a mammography screening programme is disturbing, counter-intuitive and confusing.  But there is accumulating evidence that over-diagnosis of breast cancer is substantial and is the biggest downside of mammography screening.

We have just published a study which estimates over-diagnosis of breast cancer in NSW since the introduction of BreastScreenNSW.  We estimated over-diagnosis at 30-42%.

This means that through earlier detection of breast cancer, about 25% (23-29%) of all NSW women diagnosed with breast cancer are undergoing cancer treatments (such as lumpectomy, mastectomy, radiation therapy and endocrine therapy) for cancers that would not have manifested in their lives.

The benefit of mammography screening is a reduction in the risk of dying from breast cancer. The price though is an increased risk of having breast cancer detected, because screening finds more cancers, including cancers which are so slow growing they would never be found without screening.

We did this study because we noticed that the incidence of invasive breast cancer among women 50-69 years (the target age group) almost doubled with the introduction of screening (from 150/100,000 per year to just under 300/100,000). This steep increase in incidence was not observed in women outside the screening range (ie less than 40 years and over 80 years). It was apparent, but less steep in the partially screened age groups (40-49 and 70-79).

The increase in incidence in women 50-69 years could be caused by changes in risk factors such as Hormone Replacement Therapy, obesity, and nulliparity. All of these increased over the same years as BreastScreen was rolled out, in women of the same age. However, we adjusted our results for these increases; if anything we over adjusted for them.  Our study is the first to formally adjust for these risk factors.

Incidence also goes up when screening is introduced because of lead time – the earlier detection achieved by screening.  We also adjusted for lead time; if anything we over-adjusted for lead time.

Even after these adjustments, we found 30-42% excess incidence over that expected with screening. This finding is very compelling evidence that over-diagnosis due to screening is behind the increasing breast cancer incidence in women 50-69 years of age.

This is in addition to the detection of DCIS (Ductal Carcinoma In Situ) by screening mammography. DCIS comprises about 18% of all “cancers” found by BreastScreen NSW and a very substantial proportion of that is likely to be over-diagnosis too.

DCIS very rarely presents clinically, and detection and treatment of screen detected DCIS has not caused a decline in breast cancer incidence (as occurs with cervical cancer screening and the detection of precancerous cervical lesions).

Over-diagnosis is a very significant downside of mammography screening.  In addition to the treatment risks and side effects, there is the psychological trauma of a cancer diagnosis, and its implications for insurance and cancer risk assessment in other family members.

What does it all mean? Firstly policy makers need to be aware that over-diagnosis in breast cancer screening is substantial.

It needs to be considered  when assessing any expansion of the screening program, or the introduction of another cancer screening program (which may also be affected by over-diagnosis), such as a breast cancer MRI screening program or a lung cancer screening program.

Secondly, breast screening programs need to review whether their informed c onsent information is adequate, or needs to be upgraded to provide information on overdiagnosis as well as on mortality reduction. (see here for estimates of outcomes of screening mammography for Australian women).

Thirdly, we need better tests – either a better screening test that doesn’t cause over-diagnosis or a better triage test to sort the aggressive from the indolent screen detected breast cancers.”

“We don’t want people to panic,” Dr Otis Brawley, the Society’s chief medical officer told the NYT. “But I’m admitting that American medicine has overpromised when it comes to screening. The advantages to screening have been exaggerated.”

The LA Times has another slant on the story.

Professor Ian Olver, CEO of Cancer Council Australia, says it is important to consider the pros and cons of screening for each type of cancer, rather than making blanket statements.

He writes:

“It is not helpful to bundle prostate and breast cancer together in a discussion about the benefits of screening. The aim of screening is to diagnose cancer or pre-cancerous conditions early to significantly improve treatment outcomes. It should never be interpreted as guaranteeing cure for all individuals.

The term “over-diagnosis” can apply to people who have cancers detected by screening but who would have died of something else before the cancer would have been detected in the absence of screening. Obviously very slow-growing cancers would make over-diagnosis more likely.

After many years of mammographic screening for breast cancer, the International Agency for Research in Cancer has estimated that the reduction in the death rate from breast cancer in the main target group of 50 to 69 year olds is 35%, a significant mortality benefit, but not without some cost.

The estimate from the initial mammography trials of over-diagnosis is 2 to 3% (that is cancers that would not have progressed if left untreated). Adding in the pre-invasive DCIS (ductal carcinoma in situ) the range of estimates of over-diagnosis is around 9%. However, this still means that the vast majority of detected cancers did need treatment and that lives were saved.

Prostate cancer is quite different. There is no history of population screening programs to study. Two large randomised trials of PSA testing of asymptomatic men from last year had differing results.

No change in the death rate from prostate cancer was found in an American study while in the European study a 20% relative decrease in mortality was reported.

The overtreatment rate in this study was that for every 49 men who underwent prostatectomy only one life was saved, yet each was at risk of the side effects of impotence and incontinence.

Over-diagnosis and over-treatment are why Cancer Council Australia and a number of other health groups recommend PSA screening be an individual choice. Further research should be encouraged in this and other cancers to find better screening tests and tests that will identify indolent cancers which don’t need immediate treatment.

So, although it has always been known that not every individual will benefit from screening, in the proven population screening programs, for cervical cancer, breast cancer and colorectal cancer, the likelihood of reducing deaths from these diseases outweighs the chance of over-diagnosis.

Nonetheless individuals need to be informed of both the risks and benefits.

It would be a pity if doubts about over-diagnosis discouraged participation in these programs by the groups most likely to benefit or dissuaded government from completing the roll-out of the colorectal screening program,  so that it could not reach its full potential of saving 30 Australian lives each week.”

She reports that the American Cancer Society – a longtime advocate for most cancer screening – “is now saying that the benefits of detecting many cancers, especially breast and prostate, have been overstated”.

She says that the Society is quietly working on a message, to put on its Web site early next year, to emphasise that screening for breast and prostate cancer and certain other cancers can come with a real risk of overtreating many small cancers while missing cancers that are deadly.

“We don’t want people to panic,” said Dr Otis Brawley, chief medical officer of the cancer society. “But I’m admitting that American medicine has overpromised when it comes to screening. The advantages to screening have been exaggerated.”

At one level, you could say that this is not particularly new or exciting. Many people – including leading epidemiologists and public health researchers – have been saying much the same thing for quite a while, even though the message still doesn’t seem to have permeated the mainstream consciousness.

Nor is it particularly contentious that people should be told of the potential harms of screening as well as the potential benefits (although many public health campaigns continue to play up the potential benefits without mentioning the other).

Why this story will make waves is that it’s the American Cancer Society speaking up AND the Society appears to be lumping breast and prostate cancer in the same basket.

It is going to be very interesting to watch how people (ie mammogram advocates and funders, cancer organisations, doctors, the public health brigade and the general public) respond. Watch this space….

Dr Sumitra Ananda, a cancer specialist in Melbourne, is hoping the Federal Government acts on the new findings.

She writes:

“The recent report in the MJA by our group supports the fact that the National Bowel Cancer Screening has the potential to save lives and decrease mortality. The first indicator of this is the dramatic shift in stage distribution between those that were diagnosed through the program and through symptomatic presentation.

Bowel cancer is the second most common cancer in Australia and also second in terms of mortality.

We have known from large randomised controlled trials that there is a potential to reduce mortality by 16-33%.

Breast cancer on the other hand, ranks lower in terms of mortality in Australia but has an established widespread screening program targeting women aged 50-69.

The current program has had a limited roll out to those aged 50, 55 and 65 and has only one screening with no re screening offered.

It is crucial that the government fully roles out the program with rescreening which could potentially save lives and ultimately save cost.

Participation is also a key to the success of a program and comprehensive communications campaign to maximise participation are necessary. The main reasons are likely to be the lack of awareness of the benefits of screening and reluctance or embarrassment to collect and send in a stool sample.

The study also suggests the apparent lack of uptake amongst the socially disadvantaged sections of the population. This may be due to lack of understanding, lack of interest  a study showed that people from more economically deprived areas had less interest in pursuing the test) or access (not the case in our study).

Another consideration would be that these individuals are undergoing initial screening but then not pursuing follow up or have difficulty accessing colonoscopy.

Given the potential impact of the screening program and its potential to save lives, the government must consider the complete roll out of the screening program and support the resources needed to sutain it.”

Professor Mark Harris, from the UNSW Centre for Primary Health Care and Equity,  says there is enough evidence, from this and other studies, to suggest that efforts are needed to ensure lower SES groups participate in screening and are able to access related procedures.

He writes:

“The findings of the study in the MJA are interesting but we need to keep three things in mind:

Firstly there is not necessarily evidence of a social gradient in colorectal cancer incidence (i.e. a sliding scale of incidence getting lower as income increases).  There was, however, a social gradient in male bowel cancer mortality in 2000.  The poorest 60% of the population had 1.2 to 1.3 times the colorectal cancer mortality of the richest 20% in men, but not women, aged 25-64 years (AIHW 1998-2000).  This suggests that we may already have had a problem even before the National Bowel Cancer screening program.

The second consideration is that though the study shows that there may be a social gradient in screening – with a bigger proportion of cancers detected by screening in high SES groups (25/605= 4.1%) compared with lower SES groups (7/443=1.6%) – the numbers involved are small.

Thirdly, the pilot CRC screening study showed that there was also a social gradient in the proportion of patients who tested positive who then subsequently had a colonoscopy.   Thus the pilot predicted that there may be a social gradient both in uptake of screening and subsequent colonoscopy of positive cases.  This was not due to lower rates of presentation at GPs (as rates of presentation at GPs were higher in lower SES groups).

Thus on balance we can infer that there is a social gradient in screening (both FOBT and colonoscopy).  This is all consistent with studies overseas that have shown that more educated and richer people respond to initiations to faecal occult blood testing (FOBT) screening (McCaffery K et al J Med Screen 2002; 9: 104-8).

This suggests:

We need to improve the uptake of screening in low SES groups
This may be done by improving the invitation.  The current letter is formal and complex and is unlikely to motivate poorly educated patients.  The content should be simpler and based on health promotion theory.

We should also involve GPs more actively, for example by sending mailed invitations from practices to encourage patients, especially males in poorer areas.  Invitations should be tailored to encourage different groups of patients (Myers RE Prev Med 1990; 19: 502-14).

We need to address barriers to colonoscopy amongst positive patients
Significant socioeconomic barriers to colonoscopy clearly remain.  Despite poorer patients being more likely to see their GP following screening, they are less likely to have a colonoscopy than richer patients.”

That is one worrying implication from a study just published in the Medical Journal of Australia.

Researchers sought to examine the initial impact of the national bowel cancer screening program which offers faecal occult blood testing to those aged 55 or 65.

They reviewed the data on bowel cancers diagnosed between May 2006, when the program began, and June 2008 from a database involving 19 hospitals. The good news is that cancers detected through screening tended to be at an earlier stage than those diagnosed as a result of patients presenting for testing because of symptoms.

The worrying news for anyone concerned about equity is that almost two-thirds of the patients whose cancers were detected through screening were from wealthier backgrounds. Somehow, I don’t think this means that wealthier people are at increased risk of developing the cancer; it is much more likely to mean that the poorer groups are less likely to access screening.

Professor Ian Olver, ceo of Cancer Council Australia, has filed this analysis of the study:

“The recent report on the impact of bowel screening in Australia by analysing patients who present for surgery for colorectal cancer confirms the ability of the program to save lives.

As with studies from other countries, patients who are screened present with earlier stage disease which is more likely to be cured.

The study showed a disparity between low and high socioeconomic groups. Those from lower socioeconomic groups are less likely to have been screened.

Whilst this has been reported from other studies, potential solutions are not as well researched. It is known that certain subgroups like the culturally and linguistically diverse communities and Aboriginal communities will need culturally appropriate translations of information about screening. The access of remote populations may be an issue.

However what of the majority of people in lower socioeconomic groups? A recent American study has shown that educational level is a key factor, because it influences the provision of information about screening by healthcare providers (Ye J et al Cancer Epidemiol Aug 28 epub before press).

Clearly GP’s and other providers have an important role in encouraging participation in screening.

However, the major issue remains that given the proven ability of a bowel screening program to save lives, Australia still only has a one off bowel testing program rather than a full screening program.

There is no rescreening, which should occur every 2 years, and bowel screening kits are only mailed to 50, 55 and 65 year olds. Too many Australians, of all socioeconomic groups, are missing out on a program that could save 30 lives each week if fully implemented. It is urgent that the Government completes the role-out of bowel screening.”

Croakey continues:

The other worrying note from the study is the authors’ comment about the lack of evaluation of the screening program. They wrote:”…no resources have been allocated to determine the program’s ultimate impact on bowel cancer incidence or mortality”.

If true, this seems a remarkable oversight – to roll out a national program without having in place a proper evaluation process. Is this really the case?