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Give me colostomy or give me death! (Aug-06)

Click to decide between death and living with a colostomy. Which would you choose? Are you sure?

Given the choice, would you choose immediate death,or living with a colostomy (where part of your bowel is removed and you have bowel movements into a plastic pouch attached to your belly)?

  •  Immediate Death
  •  Colostomy

Think about what it would be like if you were diagnosed with colon cancer. You are given the option of choosing between two surgical treatments.The first is a surgery that could result in serious complications and the second has no chance of complications but has a higher mortality rate.

Possible outcome Surgery 1
(complicated)
Surgery 2 
(uncomplicated)
Cure without complication 80% 80%
Cure with colostomy 1%  
Cure with chronic diarrhea 1%  
Cure with intermittent bowel obstruction 1%  
Cure with wound infection 1%  
No cure (death) 16% 20%

If you had the type of colon cancer described above, which surgery do you think you would choose?

  • Surgery 1
  • Surgery 2

How do your answers compare?

In fact, past research has shown that 51% people choose the surgery with a higher death rate, even though most of them initially preferred each of the four surgical complications, including colostomy, over immediate death.

Are you saying what you really mean?

CBDSM investigators Brian Zikmund-Fisher, Angela Fagerlin, Peter Ubel, teamed up with Jennifer Amsterlaw, to see if they could reduce the number of people choosing the surgery with the higher rate of death and therefore reducing the discrepancy. A large body of past research has shown that people are notoriously averse to uncertainty. The investigators had a hunch that uncertainty could account for some of the discrepancy. Surgery 1 has a greater number of ambiguous outcomes, perhaps causing people to be averse to it. In an effort to minimize this uncertainty, the investigators laid out a series of scenarios outlining different circumstances and presentations of the two surgeries. For example the research presented some of the participants with a reframing of the surgery information, such as:

Possible outcome Surgery 1
(complicated)
Surgery 2 
(uncomplicated)
Cured without complication 80% 80%
Cured, but with one of the following complications: colostomy, chronic diarrhea, intermittent bowl obstruction, or wound infection 4%  
No cure (death) 16% 20%

The investigators believed by grouping all of the complications together that people would be more apt to chose the surgery with the lower mortality rate, because seeing a single group of undesirable outcomes, versus a list, may decrease some of the ambiguity from previous research.

Although none of the manipulations significantly reduced the percentage of participants selecting Surgery 2, the versions that yielded the lowest preference for this surgery all grouped the risk of the four possible complications into a single category, as in the example shown above.

Why these findings are important

Over the past several decades there has been a push to give patients more information so they can make decisions that are consistent with their personal preferences. On the other hand there is a growing psychological literature revealing people's tendency to make choices that are in fact inconsistent with their own preferences; this is a dilemma. Because the present research suggests that the discrepancy between value and surgery choice is extremely resilient, much research still needs to be done in order to understand what underlies the discrepancy, with the goal of eliminating it.

The research reported in this decision of the month is currently in press. Please come back to this page in the near future for a link to the article.

Read the article:

Can avoidance of complications lead to biased healthcare decisions?
Amsterlaw J, Zikmund-Fisher BJ, Fagerlin A, Ubel PA. Judgment and Decision Making 2006;1(1):64-75.

 

 

 

How old is too old for cancer screening? (Feb-11)

Cancer screening is generally recommended for people over the age of 50. Screening tests, such as colonoscopies, mammograms and PSAs (prostatespecific antigen), can help detect cancer at an early stage andprevent deaths. These screening tests, however, do have risks so,along with their doctor, people need to make a decision about howoften to get screened and when or if one should stop gettingscreened.

Consider the question:

Now, imagine that you were screened for cancer about a year ago and no cancer was found. You and your doctor are talking about when you should come back for screening in the future. Your doctor explains that cancer screening guidelines recommend that you do come back for more screening tests but as you get older, screening for cancer is no longer a good option. Your doctor states that you should follow this recommendation as you age. Now, imagine that you were screened for cancer about a year ago and no cancer was found. You and your doctor are talking about when you should come back for screening in the future. Your doctor explains that cancer screening guidelines recommend that you do come back for more screening tests but as you get older, screening for cancer is no longer a good option. Your doctor states that you should follow this recommendation as you age.

 
Would you plan to stop getting screening tests for cancer at a certain age?
  • Yes
  • No

How do your answers compare?

In a recent study published in the Journal of General Internal Medicine, CBSSM Investigators and Mick Couper and Brian J. Zikmund-Fisher, together with lead author Carmen Lewis (Department of Medicine, University of North Carolina) and several co-authors, explored decisions about stopping cancer screening tests. This study was part of the DECISIONS study, a large survey of U.S. adults about common medical decisions.
 
Recently, the US Preventive Services Task Force recommended against prostate screening for men aged 75 and older, and recommended against routine screening for CRC screening after age 75 and any CRC screening after age 85. Cancer screening for prostate cancer, CRC and breast cancer helps to detect cancer at an early stage when they are easier to treat. However, as a person gets older, the risks of these tests become larger than the benefits.
Data was collected from 1,237 individuals aged 50 and older who reported having made one or more cancer screening decisions in the past 2 years. Participants were asked about their plans of whether or not to stop cancer screening as well as characteristics of themselves and their health care provider.
 
Only 9.8% of people planned to stop getting screened for cancer when they reached a certain age. This percentage varied by type of cancer, age and race of the participant and how much the participant was responsible for the decision apart from their health care professional.
 
Of the 119 people who gave a specific age that they planned to stop getting cancer screening the average age they did or plan to stop was 74.8 for breast cancer, 76.8 for colon cancer and 82.9 for prostate cancer.
 
The study authors concluded that “plans to stop screening were uncommon among participants who had recently faced a screening decision”. They also concluded that further research is needed to understand how people think about the risks and benefits of screening when life expectancy is short and that education around this topic may be beneficial.
 

To learn more about this study, see:

 

PIHCD: Geoff Barnes

Wed, May 18, 2016, 4:00pm
Location: 
B004E NCRC Building 16
Geoff Barnes will be presenting on a project with Brian Zikmund-Fisher and Darin Zahuranec on a decision aid for atrial fibrillation.

Genomics, Health and Society

This special interest group is led by Dr. Scott Roberts who is an Associate Professor in the Department of Health Behavior and Health Education at the School of Public Health as well as the Director and Co-Director of the Public Health Genetics Certificate Program and the Dual Degree Program in Public Health and Genetic Counseling, respectively. Research within this area examines the ethical, social and behavioral implications of advances in genomics. CBSSM serves as a crucial locus for facilitating collaborations across disciplines and units. In fact, several groups across campus have invited us to collaborate on the study of bioethical issues related to burgeoning genomics-related research; these partners include investigators at U-M’s Comprehensive Cancer Center, the Michigan Center for Translational Pathology, and the Division of Pediatric Genetics.

Topics of interest include the following:

 

Do You Know Enough to Take That Medication? (Feb-11)

People in the U.S. make decisions about their health on a regular basis. For example,they are often asked to consider taking medication to treat common health problems, such as hypertension. But do patients have sufficient information to make these decisions? And what factors might influence the knowledge patients have, and their treatment decisions?

Consider this scenario:

Bob is a 52-year-old man who went to see his physician for a routine check-up. Bob’s doctor told him his cholesterol levels were slightly elevated and suggested cholesterol medication. Bob wondered how long he would have to take the medication, and whether there would be any side effects. Please answer the following two questions about cholesterol medications.

When people start taking cholesterol medications, how long is it usually recommended that they take them?

  • less than 6 months
  • 6-12 months
  • 1-3 years
  • for the rest of their lives

How do your answers compare?

Making an informed medical decision about whether to take cholesterol medications depends, at least in part, on understanding how long a medication should be taken and whether there are side effects. CBSSM investigators Angela Fagerlin, Mick Couper, and Brian Zikmund-Fisher recently published an article on patient knowledge from the DECISIONS study, a large survey of U.S. adults about common medical decisions. One main objective of the study was to determine adults’ knowledge about information relevant to common types of medication, screening, or surgery decisions they recently made. Data were collected from 2575 English-speaking adults aged 40 years and older who reported having discussed common medical decisions with a health care provider within the previous two years. Participants answered knowledge questions and rated the importance of their health care provider, family/friends, and the media as sources of information about common medical issues.

People taking cholesterol medications usually should take them for about 3 or more years, and perhaps even for the rest of their lives. A little more than 60% of the study respondents accurately identified the time to take cholesterol medications.

Many people have trouble with this question and do not know that muscle pain is the most commonly reported side effect of cholesterol medications. Only 17% of DECISIONS study respondents were able to answer this question correctly. About 1 in 5 respondents incorrectly identified liver problems as the most common side effect of cholesterol medications.

Overall, the investigators found that patient knowledge of key facts relevant to recently made medical decisions was often poor. In addition, knowledge varied widely across questions and decision contexts. For example, 78% of patients considering cataract surgery correctly estimated typical recovery time, compared to 29% of patients considering surgery for lower back pain or 39% of patients considering a knee or hip replacement. Similarly, in thinking about cancer screening tests, participants were more knowledgeable of facts about colorectal cancer screening than those who were asked about breast or prostate cancer. Respondents were consistently more knowledgeable on questions about blood pressure medication than cholesterol medication or antidepressants.

The impact of demographic characteristics and sources of information also varied substantially. For example, black respondents had lower knowledge than white respondents about cancer screening decisions and medication, even after controlling for other demographic factors. Researchers found no race differences for surgical decisions, however.

The authors concluded by noting that improving patient knowledge about risks, benefits, and characteristics of medical procedures is essential to support informed decision making.

For more information: 

Fagerlin A, Sepucha KR, Couper M, Levin CA, Singer E, Zikmund-Fisher BJ. Patients' knowledge about 9 common health conditions: The DECISIONS survey. Medical Decision Making 2010;30:35S-52S.

 

Megan Knaus, MPH

Research Associate

Megan joined CBSSM in 2014 and has worked on multiple grant funded research projects related to health communication, patient-provider decision making, and health interventions driven by behavioral economics. She currently works with Dr. Brian Zikmund-Fisher on a National Science Foundation grant testing infectious disease communication strategies.

Last Name: 
Knaus

Tanner Caverly and colleagues performed a systematic review to determine how U.S. cancer prevention and screening recommendations present the potential benefits and harms associated with the procedures. They found that 69% of recommendation statements either did not quantify benefits and harms or presented them in an asymmetric manner. They conclude that improved presentation of benefits and harms in guidelines would better ensure that clinicians and patients have access to the information required for making informed decisions.

Caverly TJ, Hayward RA, Reamer E, Zikmund-Fisher BJ, Connochie 2, Heisler M, Fagerlin A. Presentation of Benefits and Harms in US Cancer Screening and Prevention Guidelines: Systematic Review. J Natl Cancer Inst. 2016 Feb 24;108(6). pii: djv436. doi: 10.1093/jnci/djv436.
 

Research Topics: 

The Importance of First Impressions (Jun-05)

How do your risk estimate and your actual level of risk impact your anxiety? Please answer the following question to the best of your ability:

What is the chance that the average woman will develop breast cancer in her lifetime?

The average lifetime chance of developing breast cancer is actually 13%.

How does this risk of breast cancer (13% or 13 out of 100 women) strike you?
 
As an extremely low risk 1       2       3       4       5        6        7        8       9       10 As an extremely high risk
 

How do your answers compare?

Making a risk estimate can change the feel of the actual risk

CBDSM investigators Angela Fagerlin, Brian Zikmund-Fisher, and Peter Ubel designed a study to test whether people react differently to risk information after they have been asked to estimate the risks. In this study, half the sample first estimated the average woman's risk of breast cancer (just as you did previously), while the other half made no such estimate. All subjects were then shown the actual risk information and indicated how the risk made them feel and gave their impression of the size of the risk. The graph below shows what they found:

 

As shown in the graph above, subjects who first made an estimated risk reported significantly more relief than those in the no estimate group. In contrast, subjects in the no estimate group showed significantly greater anxiety. Also, women in the estimate group tended to view the risk as low, whereas those in the no estimate group tended to view the risk as high.

So what's responsible for these findings? On average, those in the estimate group guessed that 46% of women will develop breast cancer at some point in their lives, which is a fairly large overestimate of the actual risk. It appears, then, that this overestimate makes the 13% figure feel relatively low, leading to a sense of relief when subjects find the risk isn't as bad as they had previously thought.

Why this finding is important

Clinical practice implications - The current research suggests that clinicians need to be very deliberate but very cautious in how they communicate risk information to their patients. These results argue that a physician should consider whether a person is likely to over-estimate their risk and whether they have an unreasonably high fear of cancer before having them make a risk estimation. For the average patient who would overestimate their risk, making a risk estimation may be harmful, leading them to be too relieved by the actual risk figure to take appropriate actions. On the other hand, if a patient has an unreasonably high fear of cancer, having them make such an estimate may actually be instrumental in decreasing their anxiety. Physicians may want to subtly inquire whether their patient is worried about her cancer risk or if she has any family history of cancer to address the latter type of patient.

Research implications - Many studies in cancer risk communication literature have asked participants at baseline about their perceived risk of developing specific cancers. Researchers then implement an intervention to "correct" baseline risk estimates. The current results suggest that measuring risk perceptions pre-intervention will influence people's subsequent reactions, making it difficult to discern whether it was the intervention that changed their attitudes or the pre-intervention risk estimate. Researchers testing out such interventions need to proceed with caution, and may need to add research arms of people who do not receive such pre-tests.

For more details: Fagerlin A, Zikmund-Fisher BJ, Ubel PA. How making a risk estimate can change the feel of that risk: shifting attitudes toward breast cancer risk in a general public survey. Patient Educ Couns. 2005 Jun;57(3):294-9.

 

 

The Diabetes Lobby (Dec-09)

Tell us what you think about certain public policies designed to reduce the incidence of diabetes in the US.

Please read this hypothetical news article and then answer a few questions at the end.

People with Diabetes Lobby Congress This Week

Washington, March 28 – About 1000 patients with type 2 diabetes (also commonly known as adult-onset or non-insulin-dependent diabetes) have converged here as advocates for the American Diabetes Association (ADA). They will be meeting with their members of Congress to discuss their condition and advocate for federal policies to address their disease. In addition, they will hold a rally on Thursday of this week on the National Monument grounds, to attract popular attention to their disease.
 
According to the Centers for Disease Control and Prevention, nearly 21 million Americans have diabetes, but one-third of these people do not yet know they have the disease. More than 90% of people with diabetes have type 2 diabetes, a form of diabetes which typically emerges when people are adults but which may develop during childhood. The number of people diagnosed with type 2 diabetes has been increasing every year. There were over 1 million new cases of diabetes diagnosed in 2005 among adults. Researchers believe that the conditions in the neighborhoods where people live increase their chances of getting type 2 diabetes. Rates of diabetes are highest among people living in poor neighborhoods.
 
People with type 2 diabetes develop a problem with the way their body secretes or responds to insulin, a hormone that regulates blood glucose levels. As a result, they have elevated blood sugar levels, which they must check multiple times per day and monitor their food intake. Researchers are working hard to understand more about what causes type 2 diabetes. Diabetes expert Dr. Howard Smith says, "People who live in neighborhoods where the majority of stores sell food with high calories and low nutritional value, such as fast food restaurants or convenience stores, are much more likely to develop diabetes." Several other scientific studies have supported the idea that people’s neighborhoods, including not having convenient or safe places to exercise, and being exposed to many advertisements selling high-calorie foods, are associated with the development of diabetes.
 
If left untreated, people with diabetes can become blind, have kidney damage, lose their limbs, or die. Physicians, health plans, employers, and policymakers are considering new ways to prevent diabetes, help patients manage their diabetes, and reduce this deadly epidemic. It is expected that the U.S. Senate Committee on Health, Education, and Labor will consider several bills about diabetes in the upcoming session of Congress.
 
Some people with diabetes check their blood sugar with a device called a glucometer.
 
Having read this news article, please tell us if you agree with the following policies:
 
The government should impose higher taxes on food high in calories and fat, like it does for cigarettes.
 
  • strongly disagree
  • disagree
  • neutral
  • agree
  • strongly agree
The government should provide financial incentives to encourage grocery stores to locate in areas where there are few.
 
  • strongly disagree
  • disagree
  • neutral
  • agree
  • strongly agree
The government should regulate advertisements for junk food like it does for cigarettes and alcohol.
 
  • strongly disagree
  • disagree
  • neutral
  • agree
  • strongly agree

Generally speaking, do you usually think of yourself as a Republican, a Democrat, an Independent, or what?

  • Strong Democrat
  • Not so strong Democrat
  • Independent, close to Democrat
  • Independent
  • Independent, close to Republican
  • Not so strong Republican
  • Strong Republican
  • Don't know, haven't thought much about it

How you answered: 

Researchers affiliated with CBDSM and the School of Public Health have found that "Americans' opinions about health policy are polarized on political partisan lines. Democrats and Republicans differ in the ways that they receive and react to messages about the social determinants of health."

In the study, lead author Sarah Gollust, PhD, randomly assigned participants to read one of four hypothetical news articles about type 2 diabetes. Diabetes was used as an example of a common health issue that is widely debated and that is known to have multiple contributing factors, including genetic predisposition, behavioral choices, and social determinants (such as income or neighborhood environments).

The articles were identical except for the causal frame embedded in the text. The article that you read in this Decision of the Month presented social determinants as a cause for type 2 diabetes. Other versions of the article presented genetic predisposition or behavioral choices as a cause for type 2 diabetes, and one version had no causal language.

Dr. Gollust then asked the study participants their views of seven nonmedical governmental policies related to the environmental, neighborhood, or economic determinants of diabetes:

  • bans on fast food concessions in public schools
  • incentives for grocery stores to establish locations where there are currently few
  • bans on trans fat in restaurants
  • government investment in parks
  • regulating junk food advertisements
  • imposing taxes on junk foods
  • subsidizing the costs of healthy food

Dr. Gollust also asked participants their political party identification and a number of other self-reported characteristics.

The most dramatic finding of this study was that the news story with the social determinants as a cause for type 2 diabetes had significantly different effects on the policy views of participants, depending on whether they identified themselves as Democrats or Republicans. After reading the social determinants article, Democrats expressed a higher level of support for the proposed public health policies. Republicans expressed a lower level of support for the proposed public health policies. This effect occurred only in the group of participants who were randomly assigned to read the version of the news article with social determinants given as a cause for type 2 diabetes. Dr. Gollust summarizes: "Exposure to the social determinants message produced a divergence of opinion by political party, with Democrats and Republicans differing in their opinions by nearly 0.5 units of the 5-point scale."

The study suggests several possible explanations for these results:

"First, the social determinants media frame may have presumed a liberal worldview to which the Republican study participants disagreed or found factually erroneous (ie, not credible), but with which Democrats felt more comfortable or found more familiar. . . Second, media consumption is becoming increasingly polarized by party identification, and . . . the social determinants message may have appeared particularly biased to Republicans. . .Third, the social determinants frame may have primed, or activated, study participants' underlying attitudes about the social group highlighted in the news article. . . Fourth, participants' party identification likely serves as proxy for . . . values held regarding personal versus social responsibility for health."

Dr. Gollust and her colleagues conclude that if public health advocates want to mobilize the American public to support certain health policies, a segmented communication approach may be needed. Some subgroups of Americans will not find a message about social determinants credible. These subgroups value personal responsibility and find social determinants antagonistic to their worldview. To avoid triggering immediate resistance by these citizens to information about social determinants of health, public health advocates may consider the use of information about individual behavioral factors in educational materials, while working to build public familiarity with and acceptance of research data on social determinants.

For more details about this study:

Gollust SE, Lantz PM, Ubel PA, The polarizing effect of news media messages about the social determinants of health, Am J Public Health 2009, 99:2160-2167.
 

 

Funded by Health and Human Services, Department of-Agency for Health Care Research and Quality

Funding Years: 2013 - 2016.

Both patient-centered care approaches and health information technology advances (e.g. patient portals to electronic health records) are increasing how often patients are directly presented with medical test results that identify health concerns, monitor health status, or predict future health risk. In principle, such data enable patients to actively mange health conditions and participate in care decisions. In practice, availability of data may not result in understanding, as test results are often presented in confusing formats with little context. Many patients, especially those with lower numeracy skills (i.e., poor ability to draw meaning from numbers), may be unable to interpret test outcome data and use it in decision making. For these patients, knowing test results or risk estimates does not ensure that they understand what those numbers imply or what actions they need to consider. Such data can be, quite literally, meaning-less, and patients are likely ignore such information in decision making even when they are fully informed.
We propose to draw on research methodologies from design science, decision psychology, human-computer interaction, and health communication and integrate them into a single, highly innovative research process that will tackle the problem of how best to present Hemoglobin A1c values and similar test results to patients with diabetes as an exemplar of the larger problem of meaningless medical test data. We will (a) define the problem space from multiple perspectives, (b) clarify what we can hope to achieve when we present diabetic patients with their test results, and (c) and identify possible approaches for improving data meaningfulness. Our iterative research approach involves three phases. In Phase 1, we will use intensive deep dive design sessions (a methodology borrowed from design science) with a multidisciplinary team combining experts in health communication and human-computer interaction with both practicing clinicians and expert patients. These sessions will identify discrepancies between patient needs for test result data and the formats in which such data are provided to patients, identify when low numeracy skills will be a barrier to patient interpretation and use of such data, and brainstorm potential solution concepts. In Phase 2, we will conduct rigorous comparative evaluations of proposed designs using (a) user-experience design sessions, and (b) an iterative sequence of large-sample, multi-factorial, randomized-controlled experiments in order to identify what formats make test data most meaningful and useful for facilitating informed patient decisions about medical care. In Phase 3, we will take our identified test results communication best practices and develop, program, and disseminate a test results display generator application that will be able to be integrated with existing electronic health record systems and other applications and will be made available to patients via a freely available website.

PI(s): Brian Zikmund-Fisher

Co-I(s): Angela Fagerlin, Reshma Jagsi, Predrag Klasnja, Kenneth M. Langa, Beth A. Tarini,, Sandeep Vijan

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