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Funded by Health and Human Services, Department of-National Institutes of Health

Funding Years: 2014 - 2019.

The Brain Attack Surveillance in Corpus Christi (BASIC) Project is an ongoing stroke surveillance study that began in 1999. BASIC is the only ongoing stroke surveillance project focusing on Mexican Americans. Mexican Americans are the largest segment of the Hispanic American population, the United States' largest minority group. Since the inception of this project, we have assembled a cohort of over 4,992 cerebrovascular disease patients whom we are able to follow for recurrent cerebrovascular events as well as mortality. This gives us tremendous power to detect associations with biological and social risk factors for stroke, important to Mexican Americans as well as the broader United States population. We have demonstrated increased stroke incidence and recurrence in Mexican Americans. Stroke severity and ischemic stroke subtypes are similar between Mexican Americans and non-Hispanic whites. Mortality following stroke appears to be less in Mexican Americans. In the next five years we are positioned to delineate trends in stroke rates, and to explore the potential reasons for the increased stroke burden in Mexican Americans, as well as their improved survival. This information will be critically important to all populations to reduce the devastation of stroke. We will continue to make important observations useful for planning delivery of stroke care in communities. For the first time we will investigate functional and cognitive outcome following stroke in Mexican Americans and non-Hispanic whites.

PI(s): Lynda Lisabeth, Lewis Morgenstern

Co-I(s): Brisa Sanchez

Last Saturday, Dr. Susan Goold had the highly esteemed task of presenting to the AMA House of Delegates on modernizing the Code of Medical Ethics. As the chair of the AMA Committee on Ethical and Judicial Affairs (CEJA), Dr. Goold is very involved in this massive reformatting and modernization effort. More information can be found in the AMA Wire press release.

Susan Goold is a newly elected Hastings Center Fellow. The Fellows are an elected association of researchers from around the world whose distinguished contributions in their fields have been influential in bioethics. They come from a wide range of disciplines, including medicine, nursing, the sciences, and law. For more information, visit the Hastings Center website.

Fri, November 07, 2014

Dr. Jeff Kullgren was recently interviewed for a piece in Money Magazine regarding healthcare benefits decision making. He was quoted, “Whether we like it or not, higher levels of cost ­sharing is the way of the future." This piece was also featured on the Time Magazine website.

Research Topics: 

Reshma Jagsi, MD, PhD, is lead author on an article in the November 8, 2007, New England Journal of Medicine about leaves of absence during graduate medical education, specifically leaves for childbirth and infant care. Physicians in residency programs face limitations on leave time designed to ensure adequate training as well as stability of the care-delivery system. But how can these limitations be reconciled with federal mandates-and reasonable societal expectations-for childbearing leave? Click here to see the article.

ASBH Members: ASBH is now accepting applications for 2013 Early Career Scholar Grants. The early career scholar grants are intended for students who are no more than three (3) years removed from their study program and who are beginning their careers in the field. The grants are intended to help alleviate some of the expenses associated with attending the ASBH Annual Meeting. The application is available here. The deadline to apply is August 23, 2013.

American Society for Bioethics + Humanities (ASBH)
4700 W. Lake Avenue

Glenview, IL 60025

www.asbh.org

 

What's in a Name? A Pregnancy Scenario (Nov-07)

Tell us how you'd respond to the results of a blood test for fetal chromosomal problems. And find out how your response compares with that of participants in a national survey.

Consider the following

Imagine that you are four months pregnant. You and your partner have talked with your doctor about prenatal screening tests for your fetus. Based on your family history and personal medical history, your doctor has told you that you're at low risk (2 in 1000) of having a fetus with chromosomal problems. Chromosomal problems include such conditions as Down Syndrome. In talking further with your doctor, you decide to have a routine blood test for chromosomal problems in your fetus. This test will help to give you a better estimate of the chance that your fetus would have a chromosomal problem.

Your doctor tells you that the results of this blood test have come back "abnormal." She clarifies that the blood test showed that your risk of fetal chromosomal problems is about 5 in 1000, which is higher than the number she had told you before the test. She next asks if you are interested in amniocentesis, a medical procedure in which a small amount of amniotic fluid is extracted from the amniotic sac surrounding the fetus. This procedure can tell you for sure whether or not the fetus has chromosomal problems. However, amniocentesis has its own risks. Your doctor explains that the risk of miscarriage as a result of amniocentesis may be as high as 5 in 1000.

In these circumstances would you be interested in having an amniocentesis performed?
  • Definitely No
  • Probably No
  • Probably Yes
  • Definitely Yes

How do your answers compare?

Many women decide to go ahead and have amniocentesis. There are two things in this scenario that could influence women's decisions about amniocentesis. First, the doctor described the test as "abnormal", a label that may increase worry about the possibility that the fetus would have a chromosomal problem. Second, the risk estimate of 5 in 1000 was higher than the original estimate of 2 in 1000, which also may increase concern.

CBDSM researchers, led by Brian Zikmund-Fisher, wanted to know how much influence labels such as "abnormal", "normal", "positive", or "negative" might have on people's decisions in situations like the one described above. To test this, they gave one group of women a scenario just like the one you read. In this scenario, the test results were described as either "abnormal" or "positive" before the risk estimate of 5 in 1000 was given. A second group of women read the same scenario, but in their scenario, the doctor presented only the numeric risk estimate, without any label.

Women whose test results were introduced using a qualitative label ("positive/abnormal") were significantly more worried - and significantly more likely to choose to have amniocentesis - than women who were told only the numeric risk estimate, without any label. Note that all of the women in this survey were told that they had the same final risk: 5 in 1000. The decision of the women in each group should have been the same, but adding that one qualitative label significantly changed what the women in the study decided to do.

Interestingly, the CBDSM researchers also found a reverse effect when test results were introduced with the labels "negative" or "normal." These labels tended to make women less worried and less likely to have amniocentesis than women in a comparison group. Again, these results show that adding a one-sentence introduction with a qualitative label could significantly change people's decisions.

Read the article:

Does labeling prenatal screening test results as negative or positive affect a woman's responses?
Zikmund-Fisher BJ, Fagerlin A, Keeton K, Ubel PA. American Journal of Obstetrics and Gynecology 2007;197(5):528.e1-528.e6.

Are you a numbers person? (Oct-07)

Many types of medical decisions involve making sense of numbers such as test results, risk statistics, or prognosis estimates. But people vary in their ability and confidence with numbers. How would you rate your own "numeracy"?

 

Not good at all

 

 

 

 

 

Extremely good

How good are you at working with fractions?

1

2

3

4

5

6

How good are you at working with percentages?

1

2

3

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5

6

How good are you at calculating a 15% tip?

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2

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5

6

How good are you at figuring out how much a shirt will cost if it is 25% off?

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5

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Not at all helpful

 

 

 

 

Extremely helpful

When reading the newspaper, how helpful do you find tables and graphs that are parts of a story?

1

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6

 

Always prefer words

 

 

 

 

Always prefer numbers

When people tell you the chance of something happening, do you prefer that they use words ("it rarely happens") or numbers ("there's a 1% chance")?

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6

 

Always prefer percentages

 

 

 

 

Always prefer words

When you hear a weather forecast, do you prefer predictions using percentages (e.g., "there will be a 20% chance of rain today") or predictions using only words (e.g., "there is a small chance of rain today")

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Never

 

 

 

 

Very often

How often do you find numerical information to be useful?

1

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6

Why is it important for researchers to know how numerate you are?

When a doctor or health educator is trying to communicate complex statistical information to a patient, it's helpful to know how well the patient understands numbers. This is called numeracy-the ability to process basic probability and numerical concepts. People low in numeracy might want or need different types of explanations than people high in numeracy.

How is numeracy measured?

In the past, researchers have used surveys similar to math tests to evaluate the levels of numeracy of participants in research studies. These objective numeracy tests can be time-consuming to administer and are often seen by the participants as stressful and annoying. As an alternative, a CBDSM research team-including Angela Fagerlin, Brian Zikmund-Fisher, Dylan Smith, Aleksandra Jankovic, and Peter Ubel-recently designed and tested an eight-item self-assessment tool, called the Subjective Numeracy Scale (SNS), to measure numeracy. As you saw when you completed the tool, four of the questions on the SNS measure people's beliefs about their skill in performing various mathematical operations, and four measure people's preferences about the presentation of numerical information. When the CBDSM team tested the SNS, they found that it was moderately correlated with objective numeracy tests. In a variety of risk communication and preference elicitation tasks, the SNS also predicted people's behavior almost as well as an objective numeracy test did. The advantage of the SNS is that it is quick to administer and is less stressful to participants than objective tests. In addition, only the SNS is recommended for phone or Internet administration. The researchers also found that study participants who completed the SNS were much more likely to answer all the numeracy questions and were much more likely to say that they would be willing to participate in an additional research study.

Are their broader implications?

Research has shown that many Americans, including highly educated individuals, have low levels of numeracy. Low numeracy has significant implications for people's health care, especially when it comes to understanding the risks and benefits of treatments. Although we may not easily change people's numeric ability, it may be possible to create health education materials that help patients with low numeracy skills. Several CBDSM researchers are have been pursuing this subject.

Read the articles:

Measuring numeracy without a math test: development of the subjective numeracy scale (SNS).
Fagerlin A, Zikmund-Fisher BJ, Ubel PA, Jankovic A, Derry HA, Smith DM. Medical Decision Making 2007;27(5):672-680.

Validation of the subjective numeracy scale (SNS): Effects of low numeracy on comprehension of risk communications and utility elicitations.
Zikmund-Fisher BJ, Smith DM, Ubel PA, Fagerlin A. Medical Decision Making 2007;27(5):663-671.

Making numbers matter: Present and future research in risk communication.
Fagerlin A, Ubel PA, Smith DM, Zikmund-Fisher BJ. American Journal of Health Behavior 2007;31(Suppl. 1):S47-S56.

 

 

A Matter of Perspective (Jul-07)

Are opinions on whether health care funding should be rationed dependent on an individual's perspective? Imagine that there are two regional health systems, each responsible for providing health care for one million people. The Director of each system has enough money to fund only one of two medical treatment programs. The health systems have the same limited budget and are the same in every way except for the treatment program that each Director decides to fund.

One Director decides to fund Program A, which will cure 100 people with moderate shortness of breath. People with this condition have shortness of breath when walking an average block with no hills.
The other Director decides to fund Program B, which will cure 100 people with severe shortness of breath. People with this condition have shortness of breath even when walking only short distances, such as from the bedroom to the bathroom.
Which Director made the better decision?
  • Director who funded Program A (moderate shortness of breath)
  • Director who funded Program B (severe shortness of breath)
  • Both choices were equally good
If you chose either the Program A Director or the Program B Director, how may how many people would have to be cured of other condition to make the two choices seem equally good to you? Reminder: Program A and Program B would both cure 100 people.
 
Next, please check your responses to these statements:
"The thought of only one group of people being able to get treatment while other people may not be able to get treatment makes me feel outraged."
  • strongly agree
  • agree
  • neutral
  • disagree
  • strongly disagree
"I believe that there are situations where health care has to be rationed because sometimes there are not enough financial resources (eg, money for health care programs)."
  • strongly agree
  • agree
  • neutral
  • disagree
  • strongly disagree

How do your answers compare?

Before we analyze your responses to the scenario, we'd like to offer some background information about this area of research.

In an environment of scarce health care resources, policy makers and leaders of health care organizations often must make difficult choices about funding treatment programs. Researchers find out how people value different health states by asking questions like the ones you've answered. This area of research is called "person tradeoff elicitation."

The problem is that many people refuse to give a comparison value, saying that both choices are equal ("equivalence refusal") or saying that millions of people would have to be cured of one condition to be equal to the other treatment choice ("off-scale refusal"). Sometimes these responses are appropriate, but many times these responses seem inappropriate. Furthermore, the frequency of these decision refusals depends on how the questions are asked.

What were the specific goals of this research study?

In an article published by Laura J. Damschroder, Todd R. Roberts, Brian J. Zikmund-Fisher, and Peter A. Ubel (Medical Decision Making, May/June 2007), the authors explored whether people would be more willing to make health care tradeoffs if they were somewhat removed from the decision making role. As part of their study, the researchers asked people to comment on choices made by others, in this case, the Directors of two identical regional health systems. For this study, the researchers anticipated that asking participants to judge someone else's decision would make it easier for the participants to compare the benefit of curing two conditions that have a clear difference in severity. The researchers thought that adopting a perspective of judging someone else's decision might lessen the participants' feeling about making "tragic choices" between groups of patients and hence result in fewer refusals to choose. The researchers also hypothesized that respondents taking a non-decision-maker perspective would be more detached and would feel less outraged about the idea of having to ration medical treatments. As we will explain below, the researchers were surprised to learn that their hypotheses were wrong!

What did this research study find?

Some people surveyed in this study were asked to decide for themselves which of two treatment programs for shortness of breath should be funded. Others, like you, were asked which health system Director made the better decision about treatment programs for shortness of breath. Significantly, the respondents who had the evaluator perspective had nearly two times higher odds of giving an equivalence refusal�that is, saying that the decisions were equal. Why did this evaluator perspective fail to decrease these decision refusals? One possibility is that respondents did not feel as engaged in the decision. It's also possible that respondents felt that they were judging the Directors who made the decision rather than the decision itself. Or maybe respondents didn't want to second-guess the decisions of people they perceived as experts. The researchers predicted that people who had to make the decision about treatment themselves would be more outraged about the idea of rationing health care treatments. This prediction was also wrong! 69% of all respondents agreed that rationing is sometimes necessary, and yet 66% of all respondents also felt outraged about the idea of having to ration. The percentages were nearly the same for those deciding directly and those evaluating the decision of Directors of health care systems.

What conclusions did the researchers draw?

The researchers in this study concluded that perspective definitely matters in making hard choices about allocation of health care resources. They attempted to increase people's willingness to make tradeoffs by changing their perspective from decision maker to evaluator of someone else's decision. These attempts backfired. Contrary to the researchers' predictions, people were dramatically more likely to give equivalence refusals when they were assigned to a non-decision-maker perspective. The researchers also concluded that the degree of emotion aroused by health care rationing also plays a role in people's willingness to make tradeoffs.

So, how does your response to the Directors' decision in the shortness-of-breath scenario compare with the responses of the people surveyed for this study?

If you responded that the choices of both Directors were equal, you were not alone! Overall, with this scenario and related ones, 32% of respondents in the published study refused to make the tradeoff. These were the equivalence refusals. In comparison, 21% of respondents in the study who were asked to decide themselves between two patient groups gave an equivalence refusal.

If you made a choice of Directors in the shortness-of-breath scenario, how does your numerical answer compare with the responses of people surveyed for this study?

In the study, 15% of respondents gave a number of one million or more as the point at which the Directors' decisions about the two treatment programs would be equal. These were the off-scale refusals. In comparison, 19% of respondents in the study who were asked to decide themselves about the two programs gave an off-scale refusal.

What about your level of outrage?

In the study, 69% of respondents agreed that rationing of health care treatment is sometimes necessary, but 66% also felt outraged about the idea of having to ration. These attitudes were the same whether the respondents were assigned an evaluator perspective (as you were) or a direct decision maker perspective.

Read the article:

Why people refuse to make tradeoffs in person tradeoff elicitations: A matter of perspective?
Damschroder LJ, Roberts TR, Zikmund-Fisher BJ, Ubel PA. Medical Decision Making 2007;27:266-288.

 

Tue, April 08, 2014

Reshma Jagsi’s study in the Journal of Clinical Oncology about financial decline in breast cancer survivors has been cited by various health media outlets, including Bio-Medicine, Health News Digest, and various other outlets. The study found that after receiving treatment, a quarter of breast cancer survivors were found to be worse off financially. 

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