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Funded by NIH - Department of Health and Human Services

Funding Years: 2012-2017

Treatments for cancer impose substantial burden and morbidity but net survival benefit of different strategies is often small and virtually always uncertain. Thus, clinicians may do more harm than good if treatment is too aggressive. There are a number of management strategies for breast cancer aimed at reducing unnecessary morbidity and burden on patients with favorable disease. A key barrier to advancing these initiatives is the need for a better understanding of the challenges of individualizing cancer care. The goal of this program is to improve population health by helping clinicians and their patients address the challenges of individualizing treatment of breast cancer for patients with favorable prognosis. Objective 1: To examine the challenges of individualizing treatment for women with breast cancer. Two projects will each undertake an observational study of patients newly diagnosed with breast cancer (including their attending clinicians) who were reported to the SEER registries of Georgia and New Jersey during an 18 month period to examine patient and clinician factors associated with key evaluative tests, treatments, and patient appraisal of decision quality. Project 1 will focus on challenges for surgeons and their patients with regard to locoregional therapy. Project 2 will focus on challenges for medical oncologists and their patients with regard to systemic therapy. Objective 2: To improve treatment decision quality. Project 3 will perform a randomized controlled trial of a practice based online decision tool for patients newly diagnosed with breast cancer in the Detroit and Atlanta SEER regions intended to improve decision quality. Objective 3: To accelerate the dissemination of SEER-based research findings by implementing and evaluating a tailored online portal aimed at all surgeons and medical oncologists who treated the patient samples in P1 and P2 to evaluate whether our research findings can more directly and promptly inform clinicians knowledge and attitudes about individualizing treatment. Objective 4: To advance methods in SEER population translational research focused on quality of cancer care. We propose four shared resource cores that will support program project activities, advance innovative methods in oncology population sciences, and advance team mission and long-term strategic planning.

PI(s): Steven Katz

Co-I(s): Lawrence An, Michael Elliott, Angela Fagerlin, Sarah Hawley, Timothy Hofer, Reshma Jagsi, Nancy Janz, Yun Li, Kenneth Resnicow, Jeremy Taylor, Christopher Friese

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.

Parents' decision-making about medicating infants (Jul-13)

Imagine that you are the parent of a 1-month-old infant. Your infant spits up a lot. Often there is so much spit-up that you are amazed that there is anything left in your infant’s stomach.  After spitting-up, your infant cries a lot. The crying and spitting seems especially bad after eating. But sometimes it seems like she is uncomfortable most of the time. It seems like there is nothing that you can do to stop the crying or to soothe your infant. You are worried that an infant who is this uncomfortable, and that spits up this much, might not be healthy. So, you decided to take your infant to the doctor to be checked.

After listening to your story and examining your infant, your doctor says, “You infant has something called GERD, or Gastroesophageal Reflux Disease. GERD happens when infants have a weak valve at the entrance to their stomach and, as a result, food and acid from the stomach can travel back up toward the infant’s mouth. When this happens, the infant may spit-up, and the acid in the spit-up may make her uncomfortable, and cause her to cry. Some doctors prescribe a medication that is often used to treat infants with GERD. Most infants grow out of GERD on their own, but medication is an option if you want it. However, studies have shown that this medicine probably doesn’t do anything to help improve symptoms in babies with GERD. This is the same medication that is taken by adults who have bothersome heartburn. This medication is generally considered safe for infants, and rarely causes serious side effects. I’ll give you this prescription and leave it up to you to decide whether or not you want to give it to your infant.”

Supporting information for: 2017 CBSSM Research Colloquium and Bishop Lecture (Norman Daniels, PhD)


"Setting priorities for Medicaid: The views of minority and underserved communities"
Presenter: Susan Goold, MD, MHSA, MA


Co-authors: Lisa Szymecko, JD, PhD; H. Myra Kim, ScD; Cengiz Salman, MA; A. Mark Fendrick, MD; Edith Kieffer, MPH, PhD; Marion Danis, MD, Zachary Rowe, BBA


Setting priorities for state Medicaid programs challenges policy makers. Engaging beneficiaries affected by tradeoffs could make allocations more just and more sensitive to their needs. 

Academic-community partnerships adapted the simulation exercise CHAT (CHoosing All Together) to engage community members in deliberations about Medicaid spending priorities.  After an informational video about Medicaid, individuals and deliberating groups choose from a menu of spending options constrained by limited resources. We randomly assigned participants from low-income communities throughout Michigan to participate in CHAT with (n=209) or without group deliberations (n=181) in English, Spanish or Arabic. Data collection included pre- and post-CHAT individual priorities and group priorities.

Low-income participants ranged from 18 to 81 years old (Mean 48.3); 61.6% were women. Over half (56.7%) self-identified as white, 30.8% African-American, 17.3% Hispanic, 9.2% Native American, and 12.1% Arab, Arab-American or Chaldean. Most (65.9%) had a chronic condition and 30.3% reported poor or fair health.

Before CHAT, most participants prioritized eligibility consistent with Medicaid expansion. They also prioritized coverage for a broad range of services. Most accepted daily copays for elective hospitalization (71.6% deliberators, 67.9% controls) and restricted access to specialists (60.2% deliberators, 57.4% controls). Deliberators were more likely than controls to increase, after deliberations, what they allocated to mental health care (between arm difference in allocation=0.22, p=.03) and eligibility (between arm difference in allocation=0.18, p=.04). Deliberating groups also prioritized eligibility; only 3 of 22 chose pre-expansion eligibility criteria, and 9 of 22 chose to expand eligibility further.

Members of underserved communities in Michigan put a high priority on Medicaid expansion and broad coverage. When given the opportunity to deliberate about priorities,  participants increased the priority given to expanded eligibility and coverage for mental health services.


"How Acceptable Is Paternalism? A Survey-Based Study of Clinician and Non-clinician Opinions on Decision Making After Life Threatening Stroke"
Presenter: Kunal Bailoor, MD Candidate


Co-authors: Chithra Perumalswami, MD, MSc; Andrew Shuman, MD; Raymond De Vries, PhD; Darin Zahuranec, MD, MS


Complex medical scenarios may benefit from a more paternalistic model of decision making. Yet, clinicians are taught to value patient autonomy, especially at the end-of-life. Little empirical data exist exploring opinions on paternalism.

Methods: A vignette-based survey exploring surrogate decision making after hemorrhagic stroke was administered to clinicians (faculty, residents, and nurses) at an academic health center, and non-clinicians recruited through a university research volunteer website. The cases involved an urgent decision about brain surgery, and a non-urgent decision about continuation of life support one week after stroke. Respondents rated the acceptability of paternalistic decision making, including clinicians not offering or making an explicit recommendation against the treatment, on a 4 point Likert scale.

Results: Of 924 eligible individuals, 818 (649 non-clinicians, 169 clinicians) completed the survey (completion rate 89%).  A minority of respondents (15.3%) found it acceptable not to offer surgery. Most believed it was acceptable to make an explicit recommendation that would likely result in death (73% for avoiding surgery, 69% for stopping the ventilator). Clinicians were more likely than non-clinicians to consider not offering surgery acceptable (30% vs 11%, p<0.0001). Clinicians were more likely to consider recommendations against surgery acceptable (82% vs 71%, p=0.003) and to consider recommendations to discontinue the ventilator acceptable (77% vs 67%, p=0.02). There were no differences between the nurse and physician acceptability ratings (p=0.92).

Conclusions: Clinicians and the lay public differ on the acceptability of paternalistic decision making. Understanding these differences are vital to improving communication between clinicians, patients, and families.


"Ethical Challenges Faced by Providers in Pediatric Death: A Qualitative Thematic Analysis"
Presenter: Stephanie Kukora, MD


Co-authors: Janice Firn, PhD, MSW; Patricia Keefer, MD; Naomi Laventhal, MD, MA
 

Background: Care providers of critically ill patients encounter ethically complex and morally distressing situations in practice. Though ethics committees guide ethical decision-making when conflicts arise in challenging cases, they rarely address routine needs of individual providers. Without ethics education, providers may lack skills necessary to resolve these conflicts or insight to recognize these dilemmas.

Objective: We sought to identify whether providers remark on ethical dilemmas/moral distress without being specifically prompted, when asked to comment on a recent in-hospital pediatric death. We also sought to characterize the nature of dilemmas or distress if found.

Methods: Providers involved in a deceased child’s care in the 24 hours prior to death were electronically surveyed. Questions included demographic information and free-text response. Free-text responses were thematically analyzed in Dedoose.

Results: There were 307 (35%) free-text responses in 879 completed surveys (33% total response rate), regarding the deaths of 138 patients (81% of in-hospital pediatric deaths) from November 2014 to May 2016. Multidisciplinary care team members from diverse hospital units were represented. 52 respondents described ethical challenges and/or moral distress. Disagreement/regret was a major theme, with subthemes of futility, suffering, and “wrong” medical choice made. Failure of shared decision-making was also a major theme, with subthemes of autonomy and best interest, false hope, denial, and misunderstanding/disagreement between the family and medical team. Some providers revealed personal ethical struggles pertaining to their role, including medication provision for pain at the end of life, struggling to be “truthful” while not divulging information inappropriate for their role, and determining when providing comfort care is ethically permissible.

Discussion/Conclusion: Providers experience ethical conflicts with pediatric end-of-life care but may be unwilling or unable to share them candidly. Education assisting staff in identifying and resolving these dilemmas may be helpful. Further support for providers to debrief safely, without criticism or repercussions, may be warranted.


"Capacity for Preferences:  An overlooked criterion for resolving ethical dilemmas with incapacitated patients"
Presenters: Jason Adam Wasserman, PhD; Mark Navin, PhD
 

Clinical bioethics traditionally recognizes a hierarchy of procedural standards for determining a patient’s best plan of care. In broad terms, priority is given first to autonomous patients themselves and then to surrogates who utilize substituted judgments to choose as they believe the patient would have chosen. In the absence of good information about what the patient would have wanted, clinical ethicists typically retreat to the “best interest” standard, which represents a relatively objective assessment designed to maximize benefits and/or minimize harms.  In this paper, we argue that “capacity for preferences” is a conceptually distinct and morally salient procedural standard for determining a patient’s best plan of care.  We build our argument on the grounds that 1) that many patients who lack decisional capacity can nevertheless reliably express preferences (an empirical claim); 2) these preferences are distinct from best interest and not reducible to best interest considerations; 3) that capacity for preferences, at a minimum, has moral valence for situations in which best interest is undetermined (and we argue this happens more frequently than commonly recognized); and, finally, 4) that capacity for preferences in incapacitated patients lacking reliable or valid surrogates might even subvert a best interest course of action in some cases.  Some precedent for our analysis can be found in the concept of pediatric assent. However, the idea that patient preferences matter morally has broad application for adult patients, including for those with advanced dementia and other mental illnesses that preclude capacity for decision-making.

Funded by American Cancer Society.

Funding Years: 2014-2017.

The study will examine how informal decision supporters (e.g., partners, family, and friends) contribute decisions about surgery, radiation, and chemotherapy treatment, and how these roles may vary by race and ethnicity. The project will utilize existing resources from the Cancer Surveillance and Outcomes Research Team's (CanSORT) Program Project Grant "The Challenge of Individualizing Treatments for Patients with Breast Cancer," a $13 million award received from NCI in 2012.

PI(s): Sarah Hawley

Co-I(s): Jennifer Griggs, Nancy Janz, Steven Katz, Yun Li

 

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

Funding Years: 2014 - 2017.

Suicide is a leading cause of death and suicide attempts are a major cause of disability, lost productivity, and health care costs. Suicide prevention is a research priority of the National Institutes of Health, and the US Surgeon General's National Strategy for Suicide Prevention calls for a shift towards recovery-oriented prevention efforts which promote hope and social support. Hopelessness and social isolation are two proximal risk factors for suicide which may be improved via peer mentorship, a form of peer support effective for preventing depression and repeat psychiatric hospitalizations. The primary aims of this study are to develop and pilot test a peer mentorship intervention for psychiatrically hospitalized patients at high risk for suicide. The intervention will be adapted by an expert panel from existing peer support training protocols to target suicide risk factors and to enhance suicide risk management. Protocols for training and supervising peer mentors and measures of intervention fidelity will also be developed. The intervention will then be pilot teste among 60 participants randomly assigned to receive the peer mentorship intervention plus usual care or usual care alone. Participants will be recruited from the inpatient psychiatry unit at the University of Michigan Health System. Inclusion criteria will include medical record documentation of suicidal ideation or suicide attempt at admission, and exclusion criteria will include significant cognitive impairment (according to the Mini-Cog), current receipt of peer support, or determination that peer mentorship may cause distress to the patient or the peer mentor. The peer mentorship intervention will include an in-person visit on the inpatient unit and regular in-person or telephone follow-up for 3 months post-discharge. The intervention will be delivered by peer specialists--individuals in stable recovery from serious mental illness who have received formal training and certification in peer support from the state of Michigan--with at least 6 months of professional peer support experience. The primary outcomes of the pilot study are acceptability and feasibility of the intervention as determined by: 1) >50% of eligible participants enroll in the study, 2) >70% of enrollees complete final follow- up measures at 6 months, and 3) among those assigned to the peer mentorship intervention, >80% complete an inpatient session and the median number of total sessions is at least 4. Peer mentorship sessions will be recorded and rated for fidelity. Measures of suicidal ideation and suicide attempts (the intended primary outcomes of a subsequent efficacy study) and secondary outcomes such as quality of life, functioning, depression, and service use will be obtained at baseline, 3 months, and 6 months post-enrollment by a research assistant blinded to study arm. An exploratory aim will be to measure potential mediators of intervention effectiveness including belongingness, burdensomeness, and hopelessness according to the interpersonal theory of suicide. If acceptability and feasibility are demonstrated, the study will result in a novel recovey-oriented suicide prevention intervention ready for a fully-powered randomized controlled efficacy trial.

PI(s): Paul Pfeiffer

Co-I(s): Mark Ilgen, H. Myra Kim, Cheryl King, Marcia Valenstein

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 Informed Medical Decision Making Foundation

Funding Years: 2010-2012

The overall long-term goal of this research program is to develop values clarification exercises that improve decision quality.  The research funded by this grant aims to establish the feasibility of the development and evaluation of a dynamic interactive tool that explicitly encourages values exploration and clarification.  For this study, values exploration means that patients will be encouraged to “try on” different ideas, see immediate and dynamic visual feedback, adjust and re-adjust their values, and save settings at multiple time points in order to recall and compare thoughts and feelings.  It is hypothesized that by explicitly supporting a potentially circuitous path of values exploration, the resulting approach will be more reflective of the intuitive processes that people follow to arrive at states of greater clarity.

Angela Fagerlin (PI)

 

Jacob Solomon, PhD

Alumni

Dr. Jacob Solomon was a CBSSM Postdoctoral Research Fellow, 2015-2017.

Jacob Solomon completed a PhD in Media and Information Studies at Michigan State University in 2015. His research is focused on Human-Computer Interaction and Human Factors Engineering where he studies how the design of interactive systems affects users’ behavior. His research merges methods from social sciences with computer and information science to design, build, and evaluate socio-technical systems.

Last Name: 
Solomon

Michael D. Fetters, MD, MPH, MA, Associate Professor, recently gave a talk at the 38th annual North American Primary Care Research Group (NAPCRG) meeting, held November 13-17, 2010, in Seattle, WA.

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