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Brian Zikmund-Fisher, PhD, is the featured guest editor for a special supplement to Medical Decision Making's September/October 2010 issue, highlighting the DECISIONS study, a nationwide survey of adults in the US regarding common medical decisions.  Lead author on the main paper of the supplement, Zikmund-Fisher and co-authors (including CBSSM faculty Angela Fagerlin, PhD and Mick Couper, PhD) describe the DECISIONS study, a telephone interview of a nationally representative sample of 3010 adults age 40 and over faced with making a medical decision in the past two years.  Researchers defined medical decisions as the patient having initiated medications, been screened, or had surgery within the past 2 years or having discussed these actions with a health care provider during the same interval.  Key findings from the study:

Although patients frequently receive information about the benefits of a procedure or medication, they don't always learn about the disadvantages.

Healthcare providers don't always ask patients what they want to do.

Most patients don't use the Internet to help them make common medical decisions; healthcare professionals remain the most important source of information.

Patients often don't know as much as they think they do.  Many patients feel well informed even when they don't know key facts that would help them make a better decision.

African-Americans and Hispanics were less knowledgeable than other patients about medications to treat high cholesterol.  In addition, they were more likely to say their doctor made decisions about cholesterol medications for them.

Most patients think they are more likely to get cancer than they really are, and tend to view cancer screenings as more accurate than they are.

Men and women think about cancer risks differently.  Women are more active participants in cancer screening decisions regardless of their perception of risk, whereas men tended to get involved only if they felt at higher risk.

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 Patient-Centered Outcomes Research Institute (PCORI)

Funding Years: 2014 - 2016.

Obesity is increasingly considered among the most important public health problems of our times. Bariatric surgery is arguably the only treatment that has proven effective in producing long-term weight loss for patients with morbid obesity. Bariatric surgery also results in resolution of obesity related comorbid conditions, improvements in quality of life, and increased survival.

There are currently four different bariatric surgical procedures in use: adjustable gastric banding, gastric bypass, sleeve gastrectomy, and duodenal switch. Bariatric surgery is considered a highly preference sensitive medical issue. Existing decision aids in bariatric surgery are limited in that they provide information about the average comparative risks and benefits of the treatment options, but do not provide customized estimates of the risks and benefits of the different procedures for individual patients. As a result of these draw-backs, decision aids are not frequently used in making treatment decisions in bariatric surgery.

Our proposal is highly innovative in that our decision support tool integrates data from a large clinical registry with individual patient data to provide patients with real-time, customized, accurate information regarding the risks and benefits of the treatment options to better inform decision making. This tool will be continuously updated to ensure that the data on risks and benefits that it provides are accurate and current. Our tool also provides information about other attributes of the treatment options that bariatric surgery patients and other relevant stakeholders feel are important for patients to consider in deciding whether and what type of bariatric surgery to have.

The proposed research promotes shared medical decision making for patients who are considering bariatric surgery for the treatment of morbid obesity. If our intervention proves effective, it will result in improved decision quality and outcomes of care for patients. It may also result in improved efficiency of care to the extent that it serves to augment or guide communication between the patient and physician to promote shared medical decision-making.

PI(s): Nancy Birkmeyer

Co-I(s): Lawrence An, Mousumi Banerjee, Angela Fagerlin, Sarah Hawley, Edward Norton, Lisa Prosser,

Funded by Patient-Centered Outcomes Research Institute (PCORI).

Funding Years: 2013-2016.

The birth of a child with a disorder of sex development (DSD) is stressful for parents and members of the healthcare team. The "right" decisions about gender assignment (is it a boy? a girl?) and the best course of action (e.g., should there be surgery? what kind? when?) are not obvious. While there have been large advances in diagnostic assessments like genetic and endocrine testing, the tests do not always show what caused the DSD. And, even when the tests do reveal an explanation for the DSD, knowing what happened genetically or hormonally does not usually lead to a single "correct" treatment plan. Instead, it is likely that there are different acceptable treatment options - and parents will need to make decisions based, in part, on their personal preferences, values, and cultural background. Adding more stress to the situation is knowledge that many of the decisions that need to be made by parents early in a child's life are irreversible and exert life-long consequences for the child and the family.

To support parents becoming actively involved in making such decisions, and to reduce the likelihood of future worry and regret about decisions that have been made, the investigators will create a decision support tool (DST). The DST will help educate families about typical and atypical sex development of the body, the process by which DSD are diagnosed (especially how to interpret genetic test results), and possible relationships between diagnostic/genetic testing, decisions about care, and known consequences of those decisions on their child and entire family. The DST will be used by parents of young children together with their child's health care provider.

The investigators will bring together a network of researchers, health care providers, representatives of patient support and advocacy organizations, and parents of children with DSD to share their experiences. Participants of this network will be involved at each stage of creating the DST, revising it, and putting it into practice. At the end of this project, the investigators will have a fully formed and tested DST that will be available for parents to use with their child's health care team as they are first learning their child may have a DSD.

PI(s): David Sandberg

Co-I(s): Edward Goldman, Catherine Keegan, Beth Tarini, Beverly Yashar

 

Wed, June 11, 2014

Carl Schneider, JD was quoted in a recent LA Times article titled "Scale of medical decisions shifts to offer varied balances of power" He discussed the role of doctors and patients in the process of medical decision making, "People want to know what's going on, but that doesn't necessarily mean they want to make the decision."

Research Topics: 

Funded by the Department of Health and Human Services, NIH.

Funding Years: 2010-2014.

The overarching goal of this proposal is to improve decision making about organ quality in Liver Transplantation, specifically by increasing transparency, improving patient knowledge and satisfaction, and maintaining patient and public trust in the transplant system. In addition, this research may improve patient outcomes by ensuring that high risk organs go to patients who are most likely to benefit from them. For more information, visit NIH Reporter.

PI(s): Michael Volk

 

Funded by : University of North Carolina, Chapel Hill

Funding Years: 2015-2016

 

PI: Sarah Hawley, PhD. MPH.

Funded by the National Institutes of Health.

Funding Years: 2011-2016. 

While substantial progress has occurred recognizing community expertise in Research, and involving Communities in Decisions about Research aims and methods, community influence on Research Funding priorities remains limited. Building on experience with developing, Testing and using the successful CHAT (Choosing Healthplans All Together) tool, we plan to modify an existing priority setting simulation exercise to develop a tool to engage minority and underserved Communities in setting priorities for clinical and translational Research, evaluate it from the perspective of those who participate, and examine the extent to which it actually influences Research priorities. This tool could be valuable to Research Funding organizations, community-academic partnerships, community organizations asked to participate in Research, and others aiming to engage Communities in Research. For more information, visit NIH Reporter

PI(s): Susan Goold

Co-I(s): Kathryn Moseley 

 

The novelty of risk and vaccination intentions (May-12)

It's 2009.  Early in the year, a 9-year-old girl from California became the first person with a confirmed case of H1N1 ("swine") influenza in the United States.  Shortly thereafter, the U.S. declared a public health emergency and the World Health Organization declared a phase 6 pandemic (the highest level possible).  By September 2009 a vaccination was developed and was available within a month.

You've been following the news about the H1N1 influenza as developments have unfolded throughout the year, and you feel some concern.  You have been wondering about the risk of coming down with the H1N1 flu yourself and have been thinking about whether you should be vaccinated. 

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