Breast Screening Decisions – A Mammogram Decision Aid

bsdsite2

I’m proud and excited to introduce you to Breast Screening Decisions, an online Mammogram Decision Aid designed to provide individualized, unbiased information that can help women ages 40-49 decide when to start and how often to have screening mammograms.

Breast Screening Decisions (BSD) was created in the wake of the 2009 US Preventive Services Task Force recommendations that every woman in her 40’s make an individual decision about when to start and how often to have mammograms. Not all medical groups agreed with the USPSTF recommendation, adding to the confusion many women feel about the mammogram decision and putting providers in the difficult position of having to steer each patient through the controversy to a decision that feels right for her.

Breast Screening Decisions is a support tool for shared mammogram decision making between women and their health care providers. Women ages 40-49 can access BSD online at their own convenience, then bring in the BSD summary to a preventive care visit, where an informed discussion can occur, leading to a decision about screening mammograms that both patient and her provider can feel good about.

Breast Screening Decision is not designed to influence mammogram decisions, but to inform and reduce anxiety around the decision-making process for both women and their providers. We want to help women make the decision that is right for them, whatever that decision may be.

Who Should Use Breast Screening Decisions?  

  • Breast Screening Decisions is for women ages 40-49. Women outside this age group should not use the site, as the data presented will not apply to them
  • Breast screening Decisions is for women at low to average risk of breast cancer. BSD starts with a breast cancer risk assessment – a series of questions to help women find out their own breast cancer risk. Women at higher than average breast cancer risk based on personal or family history are then advised NOT to use BSD, but instead to speak to their doctor about which breast cancer screening modalities are best for them – usually annual mammogram, but sometimes with the addition of sonogram or breast MRI.

A Tour of Breast Screening Decisions

Breast Screening Decision starts with a breast cancer risk assessment – a series of questions to help women find out their own breast cancer risk, which is then shown to her visually –

BSD YOUR RISK

The user then sees possible mammogram screening outcomes for women such as herself –

mammo bsd

including information about both the benefits as well as possible harms of screening mammogram. BSD also includes lots more info on breast cancer and mammograms that women can access through pop ups and link outs.

The heart of BSD is the option array – where BSD users can scroll through the various screening options available to them, using a a grid which displays the breast cancer mortality outcomes for each possible mammogram screening schedule – every year vs every other year or starting at age 40 vs  starting at age 50. (I love this page of the website…)

bsd mortality

The user then is shown a summary page of their breast cancer risk and possible outcomes –

bsd summaryBSD concludes with a series of questions to help women clarify their concerns and personal values around breast cancer screening.

bsd values

And finally, BSD users are given a summary to save or print out, and bring to their appointment with their health care provider.

bsd summary

An Invitation

If you are a woman ages 40-49 or her provider, we invite you to use Breast Screening Decisions, and hope it will prove to be a valuable resource in making individualized decisions about mammograms.

We welcome collaborators interested in studying the effectiveness and impact of BSD in clinical practice. If you’re interested in collaborating with us, please contact us – Margaret Polaneczky, MD (mpolanec@med.cornell.edu) or Elena Elkin, PhD (elkine@mskcc.org).

The BSD Back Story

It all started in December 2009 with a blog post I wrote explaining the United States Preventive Services Task Force Recommendations on Screening Mammograms. I was as confused as my patients were about the recommendation that the decision as to when to start and how often to have screening mammograms be an individualized one that takes into account a woman’s risk for breast cancer, as well as her personal values and concerns about breast cancer and mammography.

How the heck was I going to accomplish that in a 15 minute office visit, let alone be confident that the choice my patients made was indeed an informed one? My knee jerk response was just to ignore the recommendations and tell everyone to get an annual mammogram, regardless of who they were or what they may have wanted to do. I would certainly be supported in that tactic by my own ACOG, as well as the National Cancer Institute and of course the American College of Radiology.  Not to mention, it’s the fastest way to get off a controversial topic in the midst of busy office hours and the safest choice medio-legally.

But as I wrote that blog post and started to wrap my head around the facts about mammography as we know them today, I began to understand why some women might make a choice different that I would be recommending. In fact, I already had more than a few women in their 40’s ask me if they could skip their annual mammograms – healthy, low risk women, with no family history of breast or breast-linked cancers, some of whom had already had one or more false positive mammograms.  They wanted to back off the annual screening, and they wanted my support.  I stumbled through an office counseling session, doing what I could to confirm their low risk status, and we usually ended up compromising on an every other year schedule, while I remained worried that I was setting myself up for a lawsuit.

This was not going to work long term – not for me or for my patients. They deserved my support in making this choice, and I deserved some support in making sure their choice was an informed one, and in supporting them when they chose an option other than annual screening.

The blog post I wrote on the topic had received so much positive press (The Washington Post called it the “clearest assessment of the controversy you’re likely to find”) that I knew I was onto something. So I approached Al Mushlin, Chair of Public Health at Weill Medical College where I work, and told him I wanted to build a web-based mammogram decision aid. He hooked me up with Elena Elkin, brilliant outcomes researcher at Memorial Sloan Kettering and grant writer extraordinaire. We (well mostly Elena) wrote a grant and got funding from the Cornell CTSC. And together with our amazing research coordinators Paige Nobles and Val Pocus (both of whom unexpectedly turned out to also be web-savvy, graphically-minded visual artists), with input from Al and from experts in mammography and breast cancer, along with feedback from beta users in our target population, we build the first version of BSD (Thank you, Marwan Shouery) and piloted it with over 150 women and their providers at the primary care and Ob-Gyn practices at Weill Cornell Medical Center. We hope to publish the results of our pilot study soon, but suffice it to say that BSD was well received by women and providers alike.

For reasons related to firewalls and such (lessons learned), we had to rebuild BSD from scratch for public access (Thank you, Mohammad Mansour and colleagues), and that is the site we are releasing today.  Other than some new colors, prettier formatting and a new font or two, BSD is the same site as the one we researched. The research site will remain behind a very tight firewall for use in future research.

So now..

Almost four years, many many hours of collaborative work and thousands of dollars laterBreast Screening Decisions is finally live to the public.  

Just in time for the next USPSTF update on mammogram screening …

 

14 Responses to Breast Screening Decisions – A Mammogram Decision Aid

  1. I went through your screening process and answered all questions as they related to me at age 40. I had a 0.6% chance of having breast cancer in the next five years. Unfortunately for me, my reality was breast cancer at age 41. My 0.6% became 100%.
    Right now mammograms are what we have for early detection. I believe all women should have a baseline at 35 and 40 and every year after 40. My very small 1cm tumor was not there at 40, but was invasive and very present at 41.
    From what I know, most BC is not hereditary and if your algorithm weighs that component heavily, you will kill women with this screening procedure, but insurance companies will save money.

  2. This is FANTASTIC. I am a family practice doc who has followed your site for a few years, and I clearly recall reading your original post and thinking how excellent it was. I have frequently directed my patients who are unsure about undergoing screening to this site to read it specifically, but many times I’ve wished there was a patient-specific interface just like this. I am SO THRILLED to see this put together, and I will be using it daily during every well-woman exam for woman in this age group from now on, as well as passing it on to my colleagues. This format is rational, data- and evidence-based, clearly stated, avoids fear-mongering, is easy to use and understand including from a layman’s perspective. What a WONDERFUL tool. Thank you, thank you, thank you for all your hard work putting this together. I hope it catches like wildfire amongst primary care practitioners.

  3. Hi Dr. P I am 60 yrs old and weigh 120, 5’8″. It’s amazing to me that the powers that be have no problem scaring the crap out of me every year with my mammogram reading “heterogeneously dense”, yet when I ask for an ultrasound , then they back off.

    I’m sick of liability fear based responses to my annual exams. My grandmother died of uterine cancer and my cousin died of breast cancer. Two aunts have had mastectomies. All of this on my maternal side.

    Dr. P, how can I MAKE them give me an ultrasound? I did have a biopsy done in 1993, benign fibroid adenoma.

    But given my family history, and my age, do you think I should push them?
    Thank you for your website, it’s great!
    Gratefully
    Terry

    • Terry –

      The “powers that be” on this issue are in fact no the medical profession, but the lay public and the legislature, who have advocated for and passed laws mandating that all women with dense breasts on mammo be told so in a letter, despite there being no data that doing sonos in low risk women with dense breasts reduces breast cancer mortality. Here’s more on that if you are interested –

      http://www.tbtam.com/2014/06/dense-breasts-on-mammogram-no-need-to-be-afraid.html

      I cannot tell you what to do. The decision to have or not have sonogram is yours to make, in consultation with your own doctor and based on your personal and family history. Insurance may or may not cover based on your state.

      Thanks for reading!

      Peggy

  4. I’m currently training as a primary care intern in NYC and this is a great tool to allow for an informed decision when discussing screening mammograms with patients, thank you!

    I work with a largely Spanish-speaking population, any chance that this great tool will have a Spanish version in the future?

  5. It is important that forty-year-old women are getting mammograms to find early detection of breast cancer. These mammograms are picking up cancers that aren’t being felt in the at home exams because a lot of women aren’t performing the self-breast exams monthly or are uneducated about them. If there is cancer in the breast waiting till fifty might be too late. More and more women are coming into see a their doctors under the age of forty because of a lump that is found, and this is proving a need for exams done at forty instead of fifty.

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.