Test Results From Your Doctor - No News Is Not Always Good News

You would think that being diagnosed with cancer was bad enough. But what if you discovered that a “communication glitch” resulted in a delayed diagnosis of your cancer? A delay that resulted in your being diagnosed as a Stage IV cancer patient with a 5% life expectancy at 5 years instead of Stage I with an 85% life expectancy. How would you feel? Angry? Disgusted? Disheartened?

This isn’t a hypothetical question. According to a 2007 study of California primary care physicians, approximately 20% of patients “may not have received timely or appropriate follow-up on positive (abnormal) test results.” Remember, primary care physicians are the first line of defense against a life threatening condition like cancer. The study, conducted by the California Healthcare Foundation, concluded that such follow up delays “can lead to complications and delays in treatment.”

Don’t think that cancer patients get any special treatment when it comes to failure to diagnose or delay in diagnosis. In a 2004 Journal of General Internal Medicine article, Communication Factors in the Follow-up of Abnormal Mammograms, 33% of women with an “abnormal mammogram” did not receive adequate follow-up care from their providers.*

The reason? A breakdown in communication between the physician and patient.

Among those women that received inadequate follow-up, researchers found that their physicians did not tell them that they needed to follow up their abnormal mammogram. In addition, these same physicians tended not to document in the patient’s medical record the follow-up care plan for women with abnormal mammograms. Such documentation, among other things, serves to “remind” the physician what they need to address with the patient during subsequent visits.

Some may find these findings somewhat startling. I know I did. But it turns out that failure to diagnose or delay in diagnosis has been a problem in the U.S. healthcare industry for sometime. The 1999 Institute of Medicine report, “To Err Is Human,” documented the significant risks posed by such unsafe healthcare practices.

The Take Aways?

Do not assume your doctor will remember to tell you about your lab or test results whether good or bad.

• Always ask your doctor for a copy of the written results of any lab or radiological test.
• If your results are “marginally” abnormal, ask your doctor what that means?
• Ask your doctor what the long-term plan is for a re-testing in the event of an abnormal test finding.

*According to the American College of Radiology, 3% of mammograms performed in the United States are read as “abnormal, with up to 3% of these women actually having breast cancer.

Journal General Internal Medicain 2004;19:316–323.

Uncoordinated Care: A Survey of Physician and Patient Experience 2007, California Healthcare Foundation

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Are Women With Breast Cancer Seeing The Most Experienced Surgeons?

Up for a quiz? Great. Assume that you or your spouse were newly diagnosed with breast cancer and needed to see a breast cancer surgeon. How would go about finding a breast cancer surgeon to help treat your cancer? Remember, your treatment outcome is riding upon making the right choice.

In choosing a breast cancer surgeon would you:

1. Select from list of surgeons available through your health plan.
2. Go to a surgeon referred by another doctor.
3. Choose the surgeon based upon their reputation.
4. Go to a surgeon recommended by a family or friend.
5. Go to a surgeon based upon the hospital where they worked.
6. Go to a surgeon that was near my home.

A recent study conducted by the University of Michigan Comprehensive Cancer Center put these very questions to 1,844 female breast cancer patients in Detroit and Los Angeles.

Here’s what the study found*:

• 15% selected their surgeon from the health plan list
• 63% selected their surgeon based upon referral from another doctor
• 25% selected their surgeon based upon their reputation
• 15% selected their surgeon based upon the hospital where they worked
• 13% selected their surgeon based upon the recommendation of family or friends
• 9% selected their surgeon based upon proximity to home

* Respondents were free to cite more than one answer.

So which of these "selection methods" do you think gave breast cancer patients in the study the best odds of achieving a good outcome? According to the research, the best treatment outcomes for complex cases like cancer are associated with physicians and hospitals that treat high volumes of specific types of cancers e.g., breast cancer surgeon that perform a high volume of breast cancer surgeries.

The patients in the study most likely to experience the best outcomes were those who selected their surgeon based upon their "reputation." Why? As it turned out, these patients were more likely to get treatment from surgeons that did a high volume of breast cancer surgeries at specialized, high volume National Cancer Center-accredited hospitals. Study participants who selected their surgeon based upon reputation were also more likely to have seen two or more surgeons before surgery, i.e., more likely to seek a second opinion.

Interestingly, study participants who selected a surgeon based upon the referral from another doctor were less likely to end up being treated by a surgeon that did a high volume of breast cancer surgeries.

What’s the Bottom Line?

If you need a specialist for breast cancer or any cancer treatment for that matter, do your homework. Don’t settle for taking your doctor’s recommendation. The patients that proactively sought out information concerning the reputation of surgeon, including getting second opinions, were more likely to be treated b high volume surgeons at highly specialized cancer care centers.

For more on this study go to:

http://www.med.umich.edu/opm/newspage/2007/breastcancersurgeon.htm

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More Compelling Evidence That Patient Outcomes Are Better At Specialized High Volume Cancer Hospitals – Lung Cancer, A Case In Point

Preliminary findings from a study presented at last week’s meeting International Association for the Study of Lung Cancer in Seoul, Korea demonstrates why it so important for cancer patients or their spouses to carefully choose the right physician and the right hospital for their treatment.

The study examined the post-operative mortality for Stage III A/B non-small-cell lung cancer (NSCLC) patients undergoing complex “trimodality therapy.” This is a complex treatment where patients undergo concurrent chemotherapy and radiation followed by surgery (pneumonectomy). According to Aaron Allen, M.D., the study author, the mortality rate for patients at a nationally recognized U.S. cancer center was 4% at 30 days post surgery compared to a 30-day mortality rate of 26% from an earlier multi-hospital study

Allen, who is with the Department of Radiation Oncology at the Dana-Farber Cancer Institute, said “his suggests that the success of trimodality therapy was dependent upon two factors, the experience of the clinical center and the location of the lesion.”

Antoinette Wozniak, M.D., of the Hudson-Webber Cancer Research Center at Wayne State in Detroit, commented on Dr. Allen’s findings saying she believes that "many of these (advanced cancer) treatments work well in the hands of experienced operators," but may not translate well into the low-volume, community-based cancer care hospitals.

The study involved a retrospective analysis of the records and survival rates of 74 Stage III A/B NSCLC patients that underwent trimodality therapy between 1994 and 2005. The median age of patients was 58. Fifty-nine percent of cases were squamous cell carcinoma and 41% were adenocarcinoma. All surgeries were conducted at Brigham and Women's Hospital, which is affiliated with the Dana-Farber.

Lung cancer is the leading cause of cancer deaths. In the United States, 213,380 new cases and 160,390 deaths from the disease are expected this year.

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Don't Confuse Me With The Facts

As a former hospital executive and a long time researcher in the field of consumer health behavior, I tend to look at things differently than many of my colleagues in healthcare. Call me contrarian.

The American Cancer Society for example just released the findings from a study in which 957 adults were asked if they agreed with what turned out to be 12 myths about cancer. Turns out, according to Kevin Stein, the director of the Behavioral Research Center at the American Cancer Society, “misconceptions about cancer are rampant among Americans…particularly when it comes to cancer risks.”

What got my attention was where researchers seemed to chide those of us people who believe that the risk of dying from cancer was increasing. Turns out, a full two thirds of US adults happened to believe this is the case. Count me in, because it sure feels to me like too many people continue to die from at least the more virulent forms of cancer, including lung and pancreatic cancer.

There is an expression among marketers, that perception is the equivalent of fact. In other words, if you believe something to be true, it might as well be true because you are going to behave as if it were. Given that, what’s so wrong with people believing that they are at increased risk of getting cancer?

According to the Health Belief Model, one of the grand daddy tools that shaped much of today’s health education efforts, a person has to believe that they are at risk of getting a condition in order for them to take action. It would seem therefore that we would want more people to be concerned with their risk of getting cancer rather than the other way around. Why? Because more people would get screened, more cancers detected early on and more lives saved…except of course for lung cancer where conventional wisdom argues that there’s no sense screening for a cancer for which there is no cure.

Chances are too, that what experts dispel as a “myth” today will undoubtedly become a “fact” tomorrow. We have all seen this happen often enough to become skeptics of the health experts.

I for one would like to see the American Cancer Society focus more efforts on detecting cures for lung cancer rather than confusing people with data which, while true, contribute little to fighting what continues to be a deadly disease for too many people.

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Cancer Care In The US Has A Long Way To Go It Seems

When I decided to write a blog about cancer, I thought it would be pretty easy. After all, my wife and I have been living with it for some three years come this Fall. And then there is the endless stream of great cancer research that anyone can track by simply signing up for an RSS published by the New York Time or so on.

What has surprised me, or should I say disturbed me, is how variable the quality of cancer care is in the US among cancer doctors and hospitals. No, let’s call a spade a spade. What has scared me is how bad the quality of cancer care in the US can be at the local hospital level. How else could you explain the comments of Dr. John H. Glick of the Abramson Cancer Center at the University of Pennsylvania who finds that he typically recommends major changes in the treatment plans of 30% to 40% of patients seeking a second opinion, and minor recommended change in an additional 30% of the patients.

An article by Diane Grady in the July 29th issue of the New York Times reminded me how bad the state of affairs really is with respect to cancer care in the US.

I was surprised to find out for example that it has only been within the last two years that cancer experts across the US came together to agree upon standard treatment guidelines for the most common cancer conditions. But having guidelines and getting cancer doctors to agree to not to mention follow the guidelines is an entirely different matter.

Here’s what I mean. According to the New York Times article, “among women with breast cancer, 15 to 25 percent who should have radiation do not receive it, and 20 to 30 percent do not take the anti-estrogen drugs that are a mainstay for most patients.”

But wait, things are even worse for early stage patients diagnosed with one of the most deadly cancers – pancreatic cancer. According to a study released this June by the American College of Surgeons, 38 percent of patients who were eligible for (by treatment guidelines) and could have benefited from surgery were not even offered it by their doctors.

Apparently the same is also true for ovarian cancer. Dr. Barbara Goff, a gynecologic oncologist at the University of Washington in Seattle is quoted in the New York Times article as saying “a third of the women in the United States are not getting the right surgery, not even close…we have so many resources, but we still do so poorly with ovarian cancer.”

I could go one with the statistics. But I think you get the point. Cancer patients and caregivers like me, and many of you, really are on our own when it comes to navigating the cancer care delivery system in the US. Sure my wife finally found the right doctors and the right treatments allowing her to remain cancer free for now. Many of you too hopefully have had similar positive outcome. But I bet that like my wife and I, it probably didn’t come easy for you either. Like us, you no doubt had to fight your local doctors and hospitals to end up where you are today.

What I want to know is why does it have to be this way? Anyone else have an opinion?

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