Tag Archives: evidence

Setting the record straight on cancer research

Buist-colour

Cancer research is about testing evidence strenuously and objectively and can’t be judged by innuendo, conspiracy theories and pseudoscience, writes Steve Buist.

First things first. I’m not a doctor, and I’m certainly not an oncologist, so do with that information what you wish.
I do have a degree in biological science, and I’ve written about cancer for the past 18 years, which has given me the chance to learn from some of the best researchers around.
Science is the process of gathering information through the ongoing application of critical thinking. Science is about evidence and testing that evidence strenuously and objectively.
I believe in evidence-based medicine. I also believe in evidence-based journalism.
Recently, the Hamilton Spectator published an opinion piece with the provocative headline, “War on cancer, like the one on drugs, has failed us.
The piece relied heavily on innuendo, conspiracy theories and pseudoscience rather than evidence. I think it was irresponsible, bordering on dangerous.
Among the piece’s most absurd statements: that there is no known cure for cancer, that we should stop looking for a cure for cancer, that Big Pharma is sitting on a cure for cancer (which seems contradictory to the first two points), that people don’t die of cancer, and that 75 per cent of doctors would refuse chemotherapy themselves.
Where to even begin?
Let’s tackle the last point first, which the author stated came from “one survey” he had seen.
It turns out that, upon closer inspection, the 75 per cent figure has been taken out of context  from a survey that asked doctors a very specific question about a very specific type of harsh chemotherapy for a very specific type of incurable cancer in its terminal stage. That’s irresponsible.
No cure for cancer? That will come as a surprise to the many men who have been treated successfully for testicular cancer, which has a 97 per cent survival rate, or prostate cancer, which has a 96 per cent cure rate (based on five year survival). For women with breast cancer, nearly 90 per cent of them can expect to survive five years or more.
Overall, two out of three cancer patients will now survive at least five years, the amount of time once considered the standard to be deemed a cure. That’s up significantly from about 50 per cent two decades ago.
Could medicine be doing better? Sure. The war on cancer has been disappointing, if a 100% survival is seen as the goal. Treating metastatic cancer remains a particular challenge.
But part of the problem is that we’ve given one label – cancer – to a disease with a couple of hundred different types. It’s not surprising that finding solutions to hundreds of different problems has proven to be a challenge.
There is no one cancer and what’s become clear is there’s no one magic bullet that eradicates it.
Big Pharma sitting on a cure until they figure out how to monetize it, “as has been rumoured for years,” according to the author?
That’s out there with the faked moon landing type of conspiracy theory.
I’ve been critical of the pharmaceutical industry but that’s a level of cynicism even I can’t comprehend. It’s also highly insulting to the people who have to treat cancer every day.
Do you think someone is sitting on a cure for heart disease because they’re trying to figure out how to monetize it? Osteoporosis? Dementia? Diabetes?
Why would anyone think cancer is different?
Besides, there’s already a simple and effective way to monetize these things – prove that they work and the world will beat a path to your door. Can you imagine what would happen to the stock price of a company that announces it can cure cancer?
Oddly enough, there is one point we do strongly agree on – not enough is done to promote the prevention of cancer.
More than half of all cancer cases are preventable. Changing our behaviours – no smoking, more exercise, better diets, less drinking, protection from the sun – could seriously reduce the cancer burden.
But it still means a significant chunk of cancer can’t be prevented.
People do die from cancer. Too many people. Treatments are still needed.
All the more reason why the war on cancer must continue.

Steve Buist is the Spectator’s investigations editor. He has written several multipart series on cancer and in 2014, he was named best cancer reporter in a competition sponsored by the European School of Oncology. You can read his winning entry here

Targeting and Trust: QoL in clinical research

Roger Wilson, a patient advocate and Honorary President of Sarcoma Patients Euronet

Roger Wilson, a patient advocate and Honorary President of Sarcoma Patients Euronet

I took a random selection of 20 abstracts from ASCO 2016. None of them mentioned that quality of life had been researched in the study but looking up the detail held in clinicaltrials.gov it turns out that 16 of them did have a quality of life component in them. Whether that will be reported when the study is published is a different question. Experience suggests that it will be mentioned, but that for the most part the detailed QoL data will go unreported.

These are the days of ‘big data’ in healthcare. Increasingly we are seeing databases linked, common standards being adopted to allow similar fields to be aggregated, and increasingly comparisons can be made between key outcomes. The International Cancer Benchmarking Partnership is providing fascinating comparisons on survival outcomes from several different administrations – and it is getting into the detail of differences in the ways that national data is gathered.

The first QoL in cancer study appears to have been in the 1970s. The first paper I could find which looked at developing a methodology dates from the 1980s. We now have a proliferation of methodologies dominated by the EuroQoL EQ-5D which gives the kind of generic background view needed for health technology agencies (HTA) to assess the value of the treatment. Other methodologies relate solely to the study to which they are being applied. Unfortunately for cancer patients, the EQ-5D is too crude report the kind of detail that cancer patients need to know to make informed choices about treatment. For that reason too it can only ever be part of the picture for HTA appraisals.

What do cancer patients need from quality of life information? The full picture of the impact of a proposed treatment in the context of the treatment pathway being followed. We want side effects information, how side effects are treated, and want to know how patients feel when taking the treatment in their own words, not those of some detached academic. We want to know about long-term side effects and what comes after if this treatment fails.

The pathway is the key issue in terms of quality of life – it is not a moment in time, it is life. However there are no data covering the succession of treatments, assessing the interactions that can arise as side effects aggregate, and the challenge of describing treatment and quality of life as end-of-life approaches is avoided.

I looked around to see whether anyone is aggregating quality of life data in a way which could provide this picture. No-one. Why not, after all there is at least 30 years’ worth of data around? The quick answer is the usual big data problem, different methodologies, data fields do not match, each study looks at the treatment being tested not at the patient. The pathway is ignored.

“No-one is aggregating quality of life data in a way which could provide this picture”

We are entering the world of targeted therapies. Targeting is a challenge for randomised studies: they can be unethical, either randomising patients when there is good evidence to indicate one arm is more effective than another, or using cross-overs, which invalidate the randomisation. Phase 2 studies usually do not include quality of life because there is no control group baseline with which to compare the treated patient. A strong response rate (60%+) is enough to ensure entry into clinical practice. One result is that patients are offered new treatments without being able to see a full picture of the step they are taking. Possibly just as important, health technology agencies are denied the whole picture of value which they need to make decisions.

Let us leave aside any questions about whether patients will accept such treatments – these issues disappear when survival itself is your primary challenge. Yet, as trials for targeted treatments reach statistical significance faster and with fewer patients than trials for traditional drugs, patients face increasing uncertainty about the impact of therapies they are taking. We need something to mitigate that uncertainty.

A first step would be aggregating existing QoL data to derive a picture of each cancer pathway, modified as clinical standards evolve. It would provide a baseline for comparing new treatments.

A second step would be using one tool/methodology for all QoL in cancer research. Agreeing that step when there are so many competing methodologies is likely to be difficult.

The third step would be requiring a relevant patient group to be the determinant of the measures to be adopted in each QoL study, small or large. Not easy to arrange but do-able.

A fourth step would be mandating full analysis and reporting of QoL data when it is undertaken in a clinical study. That should not be impossible.

If the cancer research community does not take on this challenge we could affect one of the binding factors of cancer care, trust between patient and doctor. Targeted therapy is an amazing development but we are journeying together into an unknown future built on that trust alone, something we haven’t done for more than thirty years.

We welcome contributions to this blog. If you have a topic you would like to write about, please send your post to Corinne Hall – chall@eso.net You can find our guidelines here – How to write a blog

 

 

Closing the 40% survival gap in Gaza

 

shayma wahaidi cropped

Shaymaa Al Wahaidi is a pharmacist trained in public health who is about to return to Gaza to support efforts to improve diagnosis and care of breast cancer patients

In Gaza, only around 50% of women diagnosed with breast cancer will still be alive five years down the line, compared to almost 90% in countries like the UK and USA.

 

I’m a Palestinian pharmacist from Gaza, and I’m about to return there after completing a Public Health course in Oxford, with a view to becoming a public health researcher. My current interest is the lack of support for early diagnosis for women with breast cancer in Gaza. I used to work with breast cancer patients, and I’ve noticed that women in Gaza often present late for diagnosis and have many fears associated with the disease.

 

The poor rate of breast cancer survival partly reflects cultural attitudes about breast cancer. Some women, for instance, worry about being divorced if they were to be diagnosed with the breast cancer. As result, even if they suspect that they have breast cancer, they sometimes prefer to keep silent and die waiting.

 

But women can also be deterred from seeking a diagnosis because they know how hard it can be to get access to treatment. Once diagnosed with breast cancer, women face many challenges, and it has been suggested that their treatment in Gaza is below acceptable standards. A few years ago, the Ministry of Health had to appeal to international bodies after stocks of almost 15% of essential chemotherapy drugs ran out, and adherence to scheduled treatments for breast cancer was impossible due to the erratic supply of medicines.

 

This problem has not been resolved. Last December, breast cancer patients in Gaza organised a demonstration in protest that the medication they need is still not available, and even when it is available, it is unaffordable.

 

Part of the problem is poor use of meagre resources. There’s only one histopathological laboratory, and there are no facilities for radiotherapy. And yet there are currently four mammography units in Gaza, despite the evidence-based research that challenges whether women in general derive any benefit from mammographic screening. Most of the time hospitals cannot import the chemicals used for the mammography X-rays anyway. Considering Gaza’s disastrous economy – half the population lives on less than $3 per day – spending money on mammography facilities, which charge around $27 per appointment, is not justifiable.

 

It is my hope that we can start to improve the situation for women and for breast cancer patients in Gaza if we start to direct research attention to how we can improve our healthcare facilities, train up personnel in breast cancer investigation and treatment, and improve adherence to treatment guidelines.

 

We also need to conduct detailed investigations to understand more, for instance, about women’s experiences and perceptions regarding adherence to treatment, and about their quality of life and their experiences after mastectomy.

 

As long as health services in Gaza are unable to offer adequate treatments for breast cancer patients, Palestinian women will continue to die from a disease which in many countries is seeing increasingly high survival rates. In addition, until significant steps are taken in early diagnosis, women will continue to present at a late stage of the disease, when the chances of prolonging their lives are reduced.

 

I hope that when I return home in a few weeks’ time, I will be able to use what I’ve learned to start to make a real difference.

Breast cancer patients and survivors help other patients by sewing prosthetic breasts that are distributed free

Breast cancer patients and survivors help other patients by sewing prosthetic breasts that are distributed free

The multiple problems women with breast cancer face in Gaza have been captured in a moving animation, “Fatenah”, which follows the journey of one woman from her delayed diagnosis to the multiple delays, stress and humiliation involved in getting access to the right treatment 

Fatenah

 

We welcome contributions to this blog. If you have a topic you would like to write about, please send your post to Corinne Hall – chall@eso.net You can find our guidelines here – How to write a blog

More pieces in the prostate puzzle

Simon Crompton

Simon Crompton

When are the costs of surgery too great? It’s long been a burning question in prostate cancer, and papers presented over the past few days at the European Association of Urology’s conference in Madrid have added a few more pieces to the risk versus benefits jigsaw.

Speaking recently to Per-Anders Abrahamsson, the association’s Secretary General, for an article to be published in Cancer World, I was told about the current gaping holes in research in prostate cancer. For example, there is no randomised trial comparing radiation therapy with surgery – which constantly gets in the way of good clinical decision-making.

Clinicians and patients are also short of information to weigh about the long-term side effects of treatments – and research presented at EAU showed that the evidence that clinicians currently act on might also be misleading. Take the incidence of erectile dysfunction following prostate removal surgery. The standard way of measuring erectile dysfunction is by the International Index of Erectile Function (IIEF), but researchers from the Herlev Hospital in Copenhagen realised that this might not take into account the sudden change in erectile dysfunction brought about by prostate surgery.

So they added another simple question to the survey: “Is your erectile function as good as before the surgery? (yes/no)”

The difference it made to responses from prostate surgery patients was striking. Responding to the IIEF survey without the additional question, nearly 24% of patients registered no decline in their erectile function after surgery. But when they were asked the additional question, just 7% said their erections were as good as before surgery.

That’s quite a difference for quite a lot of people. Such evidence could have a major influence on decisions about whether or not to have a radical prostatectomy.

Also presented at the conference was evidence about another kind of cost associated with prostate surgery: urinary incontinence. A team of doctors from the University of Nijmegen, the Netherlands, have used health insurance data to reveal the extent of post-operative incontinence and the costs of dealing with it. On a purely financial basis, the information is interesting enough: the average cost of incontinence pads is €210 each year (another study calculated that the 20 year additional cost of incontinence for a man after prostate surgery is close to €50,000).

But more important were the findings about the percentage of men suffering urinary incontinence in the first year after a urology procedure or follow-up. For men undergoing watchful waiting/active surveillance, it was 8%. For those undergoing prostate removal it was 80%, persisting into a second year for 40%.

Patient information about prostate surgery rarely specifies such figures, often offering vague reassurance that “most men” see a quick improvement in continence after surgery – as if it would be wrong to frighten them too much. As more evidence becomes available to fill in the picture on complex decisions, it’s only right that it should be shared with those it affects most.