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Funded by National Institutes of Health

Funding Years: 2015-2020

Every day in hospitals across the country, patients with severe stroke and their families are faced with decisions about life-sustaining treatments in the initial hours of admission. These decisions about resuscitation status, invasive treatments, or possible transitions to comfort care are typically made by a surrogate decision- maker due to communication or cognitive deficits in the patient. This surrogate must consider the patient's life goals and values to determine if their loved one would choose on-going intensive treatments where they may survive and yet have long term disabilities, or prioritize comfort and accept the likelihood of an earlier death. Serving as a surrogate decision maker for a patient in the intensive care unit can have long lasting negative consequences. However, almost nothing is known about surrogate decision makers in diverse populations with stroke. Hispanic Americans are now the largest minority group in the US, rapidly growing and aging, with Mexican Americans comprising the largest subgroup. Multiple disparities have been identified in stroke incidence and outcome between Mexican Americans and non-Hispanic Whites, particularly in the use of life- sustaining treatments. Minority populations may be particularly vulnerable to inadequate communication about end-of-life issues due to socioeconomic disadvantage, poor health literacy, and lack of provider empathy and health system strategies to improve communication. However, Mexican American culture includes strong values of family support and religiosity that may have a positive influence on discussions about life-sustaining treatment and adapting to stroke-related disabilities. There is currently a critical gap in understanding the perspectives and outcomes of stroke surrogate decision makers, making it impossible to design interventions to help diverse populations of patients and families through this incredibly trying time.

PI(s): Lewis Morgenstern, Darin Zahuranec

Co-I(s): Lynda Lisabeth, Brisa Sanchez

Funded by : University of North Carolina, Chapel Hill

Funding Years: 2015-2016

 

PI: Sarah Hawley, PhD, MPH

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 the National Institutes of Health

Funding years: 2011-2015

Colorectal cancer has a major impact on Americans, yet its screening rate remains suboptimal. This study aims to improve colorectal cancer screening rate by using an innovative and interactive decision aid that helps patients choose among colorectal cancer screening options. The study will also elucidate how patients and physicians discuss colorectal cancer screening options. for more information visit NIH Reporter.

PI: Masahito Jimbo

Co-I: Sarah Hawley

Funded by the Department of Veterans Affairs.

Funding Years: 2012-2013.

Diabetes is a complex, chronic disease encompassing many domains of treatment. VHA and others have created diabetes guidelines to help support providers and patients in making choices about optimal treatment approaches. However, most guidelines are broad in nature, and offer relatively little guidance on how to personalize care in order to maximize treatment benefits, minimize the intensity and negative effects of treatment, and best align with individual treatment preferences. 

We will test the effectiveness of a personalized decision support program. Our long term goals are:

  • To test and implement a decision support program, including decision coaching supported by an interactive, personalized decision support tool, in clinical practice via our Patient-Aligned Care Team (PACT) laboratory.
  • To assess the impact of personalized decision support on patient-centeredness, patient satisfaction, and the effectiveness of risk communication and treatment decision making.

We propose an interventional study to examine the effectiveness of personalized decision support. The intervention will consist of two key components: a decision coach  and a personalized diabetes decision support tool. The decision support tool has mostly been developed via AHRQ and local pilot funding mechanisms, and is informed by personalized estimation of treatment benefits for blood glucose, blood pressure, and lipid treatment based on extensive modeling work done by our investigative team. The personalized benefit information is communicated through graphical risk communication methods (pictographs).  

PI(s): Angela Fagerlin 

Give or take a few years (Feb-05)

A longer life may result from the amount of social support present in your life, but is the longevity due to giving or receiving that support?

Imagine that in your busy schedule each week, you typically at least have Wednesday and Saturday nights free as time to spend however you want. Recently, however, one of your close friends had her car break down and now she is wondering whether you would be willing to drive her to and from a yoga class on Wednesday nights for the next three weeks while the car is in the shop. She told you that the class is only about a 15 minute drive each way. She said that you shouldn't feel pressured, and she just thought she'd ask if you had the time to help her out.

Would you be willing to drive your friend to and from her yoga class for the next three weeks?
  • Yes, I'd take the time to help her out.
  • No, I'd keep my Wednesday nights free.
Do you think that helping out others could at all affect your health?
  • Yes
  • No

Giving vs. receiving: effects on mortality

A research team of investigators at the U of M Institute for Social Research teamed up with CBDSM investigator, Dylan Smith, to conduct a study investigating whether giving or receiving help affects longevity. The researchers noted that receiving social support is likely to be correlated with other aspects of close relationships, including the extent to which individuals give to one another. Based on this, they hypothesized that some of the benefits of social contact, sometimes attributed to receiving support from others, may instead be due to the act of giving support to others.

Using a sample of 423 married couples from the Detroit area, the investigators conducted face-to-face interviews over an 11-month period. The interviews assessed the amount of instrumental support respondents had given to and received from neighbors, friends, and relatives, as well as the amount of emotional support they had given to and received from their spouse. Instrumental support included things like helping with transportation, errands, and child care, whereas emotional support involved having open discussions with a spouse and feeling emotionally supported. Mortality was monitored over a 5-year period by checking daily obituaries and monthly death record tapes provided by the State of Michigan. To control for the possibility that any beneficial effects of giving support are due to a type of mental or physical robustness that underlies both giving and mortality risk, the investigators also measured a variety of demographic, health, and individual difference variables, including social contact and dependence on the spouse.

The investigators found that those who reported giving support to others had a reduced risk of mortality. This was true for both instrumental supoprt given to neighbors, friends, and relatives, and for emotional support given to a spouse. They also found that the relationship between receiving social support and mortality depended on other factors. Specifically, receiving emotional support appeared to reduce the risk of mortality when dependence on spouse, but not giving emotional support, was controlled. Receiving instrumental support from others actually increased the risk of mortality when giving support, but not dependence on spouse, was controlled.

What can we make of these findings?

It appears from these results that the benefits of social contact are mostly associated with giving rather than receiving. Measures that assess receiving alone may be imprecise, producing different results as a function of dependence and giving support.

Given the correlational nature of this study, it is not possible to determine conclusively that giving support accounts for the social benefit traditionally associated with receiving support. Nevertheless, the results of the present study should be considered a strong argument for the inclusion of measures of giving support in future studies of social support, and perhaps more importantly, researchers should be cautious of assuming that the benefits of social contact reside in receiving support.

It's true that when helping others out, you might have to give up some of your own time, but based on the above findings, it looks like in the long run you may end up ultimately gaining more time.

Read the article:

Providing social support may be more beneficial than receiving it: results from a prospective study of mortality.
Brown S, Nesse RM, Vinokur AD, Smith DM. Psychological Science 2003;14:320-327.

Sarah Hawley, PhD, MPH

Faculty

Dr. Sarah T. Hawley is a Professor in the Division of General Medicine at the University of Michigan and a Research Investigator at the Ann Arbor VA Center of Excellence in Health Services Research & Development. She holds a PhD in health services research from the University of North Carolina and an MPH from Yale University Department of Public Health. Her primary research is in decision making related to cancer prevention and control, particularly among racial/ethnic minority and underserved populations.

Last Name: 
Hawley
Press Coverage: 
Thu, February 01, 2018

Breast cancer patients face complex decisions about their treatment. Sarah Hawley, Reshma Jagsi, and colleagues developed an interactive online tool to help patients understand their treatment options. In a study published in the Journal of Clinical Oncology, they found that patients using the interactive tool had higher knowledge and felt more informed about options and felt better prepared to make a treatment choice.

How would you adapt? (Nov-05)

Could you cope and find happiness if you were living with paraplegia? Think about what it would be like to have paraplegia and to imagine the impact of this disability on your life. Although some aspects of your life will become more difficult, there are ways to make your daily life a little easier.

List something that would help you to adapt physically if you had paraplegia. (For example, if you lost your eyesight, you could learn Braille, and/or use a cane). Just as there are ways to help you to adapt physically to paraplegia, there are also ways to help handle the immediate and long-term emotional reactions. List a strategy that you would use to emotionally cope with having paraplegia.

Please think about the two most upsetting things about developing paraplegia. Do you think these two things would become more or less upsetting over time?

  • More upsetting over time
  • Less upsetting over time
  • Equally upsetting over time

Please rate paraplegia on a scale from 0 to 100, where 0=quality of life as bad as death and 100=quality of life as good as perfect health.

How do your answers compare?

Those who were given the adaptation exercise rated paraplegia much higher, 62. That means considering adaption tends to have people look more favorably on paraplegia than they otherwise would. For most people, the adaptation exercise resulted in higher ratings. Let's take a closer look at the actual study and explore the importance of considering adaptation.

A discrepancy in perceptions of quality of life

When people first think about a disability, it might seem pretty catastrophic. At first glance, you might think that people living with paraplegia must be miserable. Patients who actually have paraplegia, however, report their quality of life to be significantly better than the public estimates that it would be. It appears, then, that there is a discrepancy between the self-rated quality of life of people with paraplegia, and healthy people's estimates of what their quality of life would be if they had this condition.

Why this discrepancy?

CBDSM director Peter Ubel teamed up with researchers Christopher Jepson and George Loewenstein to conduct a series of studies that aimed to explain why this discrepancy exists. Past research has suggested that patients do not overestimate their good mood, which led the researchers to hypothesize that, in fact, non-patients truly underestimate the quality of life experienced by people with disabilities. The researchers speculated about two explanations that could account for this underestimation. One possibility is that non-patients may be subject to a focusing illusion. That is, they might fail to appreciate that not all life domains or life events will be affected by the disability. Another possibility is that non-patients may be failing to consider adaptation, unable to realize how their feelings and their ability to cope will change over time.

In one study, each subject received one of several defocusing tasks in addition to rating paraplegia. For example, one of these tasks asked subjects to rate how much better or worse their life would be with regards to eight specific life events (e.g., visiting with friends). Another task asked subjects to think of five events that took up the largest amount of their time the preceding day and to rate how much better or worse these events would be if they had paraplegia. In a second study, subjects received one of several adaptation exercise in addition to rating paraplegia. One of these was similar to what you read on the previous page, although more extensive. Another had subjects consider their quality of life both 1 month and 5 years after developing paraplegia. In both studies, sujects rated paraplegia either before and after or only after completing an intervention.

The researchers found that none of the defocusing tasks had any effect on ratings of paraplegia. In fact, these tasks actually caused many participants to give lower ratings than they would have otherwise. All of the adaptation exercises, on the other hand, increased subjects' ratings of paraplegia. Taken together, these results support that the tendency of nonpatients to underestimate the quality of life associated with disabilities is not the result of a focusing illusion, but rather the result of failure to consider adaptation.

Read the article:

Disability and sunshine: Can predictions be improved by drawing attention to focusing illusions or emotional adaptation?
Ubel PA, Jepson C, Loewenstein G. American Journal of Psychiatry 2005;11:111-123.

PIHCD Working Group

Thu, March 05, 2015, 3:00pm to 4:00pm
Location: 
B004E NCRC

David Hutton will be speaking about a project to examine how patients and providers make decisions and value different attributes of high-cost biologic medications for ophthalmologic use.

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