Pre-Osteoarthritis: Do we really need another "Pre-" disease?

This Spring, Dr Annemarie Jutel (RN, BPhEd(hons), PhD) from the Victoria University of Wellington shared with m some of her work on Social Issues in Diagnosis.

Dr Jutel is a social theorist and clinician interested in finding an understanding of just how diagnosis works, whether from the historical, linguistic, social, literary, clinical, or other angle. 

She explained: 

I am most interested in the “diagnostic moment” and the power of the diagnostic utterance; there is nothing that fundamentally changes in your soma from the moment you walk in to the doctor’s rooms, and the moment you get your diagnosis, but at the same time, if the diagnosis is a difficult one, everything has changed. 

I started following her posts on the Facebook Group, Social Issues in Diagnosis, which explores why and how we create these labels and what impact they have on patients and the course of medicine.

The most recent post is about pre-diagnosis, stimulated by this 2015 paper in Cartilage. If we can detect osteoarthritis before it starts, maybe we can stem the epidemic. Or, maybe we can turn a bunch of healthy, naturally aging, well-people into frightened patients?

In response to the article, Jutel asks:

What is a prediagnosis and what are its consequences? 

If pre-diagnosis states are, potentially, windows of opportunity, wherein individuals can adopt healthy, disease-avoidance behaviours, is there an advantage to calling these states "pre-whatever" as opposed to identifying them as healthy states, wherein health can be further improved?

What are the consequences of being given a pre-diagnosis? For some it may be a scary moment which marks their identity forever more. For others, it may be a wake-up call.

What would it be for you?

Take a look on the FB Group to participate or to learn more, see her book, Social Issues in Diagnosis.


"#Overdiganosis is in the eye of the beholder" The challenge begins with definition

Stacy Carter headed a great session at the Preventing Overdiagnosis 2014 conference in Oxford, which is where I met her for the first time.

 This BMJ talk Medicine interview expands on that session and on the paper written with Rogers, Heath, Degeling, Doust, and Barratt. They explore the culture (ethical and social aspects) and science behind "overdiagnosis," why it is so hard to define, and limitations of the term.

Listen at the BMJ and read the paper, which I am delighted to report, cites this website!


Follow Up: The Name of Cancer: Even Aboriginal Languages are Changing

In my last post, I shared an article that advocated for changing the name of "pre-cancers" and "early cancers" to reflect their benign, watchable, or treatable natures. The hope in doing so is to remove the stigma of "The Big C" for patients, allowing them to see a clear difference between aggressive cancers and their indolent cousins.

Working in the NWT and Nunavut, I must say that it warms my heart to see that Canadian Aboriginals are taking a big part in changing the terminology. Some of the words and phrases are so remarkably apt, perhaps we'll be borrowing them into English.

Language officials in Nunavut released their new word for cancer this week.

The new term “kagguti” comes from the Inuktitut word kagguaq, which means “knocked down out of natural order."

It replaces “annia aaqqijuajunnangituq” or “an incurable ailment," which officials felt was giving people the wrong impression of the disease.

I love the translation of the word kagguti, it explains cancer at a cellular level and on a personal one too. The cells have lost the signals that keep them from over-replicating, and the cancer could prevent a person from living their life in the expected or natural way.

Read more on CBC News.

What’s in a name? Why we need to reconsider the word cancer

doctor: "You have cancer."
our brains: Panic! Cancer! What!? Cancer!
our mouths:  "Oh . . . Uh oh! Well, is it a BAD kind of Cancer?"

It's the "Big C." It's a scary word. And fortunately there is a lot we can do with screening, advanced tools for diagnosis, and treatment in many modalities to combat the Big C.

These days, everyone gets cancer, unless something else gets them first. Cancer is part of the natural process of cells replicating, and it's all explained elegantly by the New York Times Sunday Review: Why Everyone Seems to Have Cancer.

But not all cancers will end our lives. There are "pre-cancers" and there are "early cancers," and these are often not going to hurt us, so they are okay to manage with a 'watch and wait' strategy. People can be scared into seeking aggressive treatment because they lump these "pre-cancers" in with the "very much cancers," which usually warrant a good battle in the right patient.

Sometimes it does matter if we can catch things early and treat them before they progress, like when we see changes of the cervix during pap screening; these can be treated to prevent progression to invasive cancers. That's really important, and it saves lives, but it only applies to a certain population, under certain circumstances.

Sometimes it doesn't much matter when we catch things, as we are learning with most cases of prostate cancer, for example. In recent years we have started to discover that the treatment might be worse than the disease, and maybe we shouldn't be screening for prostate cancer the way we have been.

Perhaps we should be more careful then with what we label "CANCER." That word tends to lead to a cascade of troubled thoughts, and we wind up worried about writing a will, rather than understanding what those dastardly – but potentially harmless – cells in our body are doing.

Alexandra Barratt, Professor in the Department of Public Health at University of Sydney writes:

Early cancers and pre-cancers (abnormal cells that could turn cancerous) found by screening tests, such as mammograms and PSA tests, should be renamed without (scary) words such as carcinoma or neoplasia in their title. They suggested they could be renamed IDLEs – indolent lesions of epithelial origin.

She goes on to explain the risks of overdiagnosis, the fallacy of lead-time-bias, and what we can do about all this as patients and providers, with the guidance of the National Cancer Institute.

Read more on The Conversation.