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Funded by National Institutes of Health; Nationatal Institute on Aging

Funding Years: 2012-2017

A cornerstone of the nation’s social science research infrastructure, the Panel Study of Income Dynamics (PSID) is a longitudinal survey of a nationally representative sample of U.S. families. Begun in 1968, 36 waves of data have now been collected on PSID families and their descendents. Its long-term measures of economic and social well-being have spurred researchers and policy makers to attend to the fundamental dynamism inherent in social and behavioral processes. This project collects, processes, and disseminates three modules in the 2013 and 2015 waves of the PSID:
1.Health module: Including 15 minutes of survey questions on health status, health behaviors, health insurance coverage & health care costs. Linkages to the National Death Index and Medicare will be extended;
2.Wealth module: Including 10 minutes of survey questions on wealth, active savings, and pensions. Linkage to Social Security earnings and benefits records for active sample and decedents will be undertaken for the first time, and a new module to minimize errors in reports of wealth changes will be developed and implemented; and
3.Well-being module with related psychosocial measures: A mixed-mode (web/mail out) questionnaire to collect content from both respondents and spouses about their well-being and related psychosocial measures (e.g., personality, intelligence), with an experiment to identify (and allow researchers to adjust for if necessary) mode effects.

PI(s): Robert Schoeni

Co-I(s): Mick Couper, Vicki Freedman, Katherine McGonagle

Funded by the National Institutes of Health

Funding Years: 2015-2020

Every year, one in 10 older people fall and sustain injury requiring medical care. Fall-related injury is the number one cause of accidental death in older Americans. However, fall injury is rarely considered as a outcome in controlled trials, which have traditionally focused on death and cardiovascular events. Until recently, we lacked methods of capturing fall-related injury in large healthcare databases. We will first use the Health and Retirement Study, a national study of older Americans, to develop a method of classifying severe fall injury in found in Medicare claims data across acute, ambulatory, and long-term care. Next, we will study how a national healthcare system, the Veterans Health Administration (VHA), delivers aggressive hypertension care (AHC) and whether AHC results in net benefit or harm due to cardiovascular events and severe fall-related injury. Hypertension is the single most common chronic condition in older adults. Medication treatment prevents important cardiovascular events (strokes, myocardial infarctions and heart failure), however also contributes to risk of falls. We do not fully understand the net benefits and harms among our oldest patients in clinical practice, especially after age 75 - those most prone to severe fall-injury. Thus, we aim to study the net harms and benefits associated with AHC.

PI(s): Lillian Min

Co-I(s): Timothy Hofer, Kenneth Langa, Neil Burton Alexander, Andrzej Galecki, Eve Kerr, Hyungjin Myra Kim

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 National Institutes of Health; National Institute on Aging

Funding Years; 2011-2016

A cornerstone of the nation's social science research infrastructure, the Panel Study of Income Dynamics (PSID) is a longitudinal survey of a nationally representative sample of U.S. families. Begun in 1968, 36 waves of data have now been collected on PSID families and their descendents. Its long-term measures of economic and social wellbeing have spurred researchers and policy makers to attend to the fundamental dynamism inherent in social and behavioral processes. The PSID is increasingly being used to answer innovative social and behavioral research questions in the context of an aging society. This application proposes to collect, process, and disseminate three modules in the 2013 and 2015 waves of the PSID: 1. Health module: Including 15 minutes of survey questions on health status, health behaviors, health insurance coverage & health care costs. Linkages to the National Death Index and Medicare will be extended; 2. Wealth module: Including 10 minutes of survey questions on wealth, active savings, and pensions. Linkage to Social Security earnings and benefits records for active sample and decedents will be undertaken for the first time, and a new module to minimize errors in reports of wealth changes will be developed and implemented; and 3. Wellbeing module with related psychosocial measures: We will design and implement a mixed-mode (web/mail out) questionnaire to collect content from both respondents and spouses about their wellbeing and related psychosocial measures (e.g., personality, intelligence), with an experiment to identify (and allow researchers to adjust for if necessary) mode effects. After collection, the data will be processed and distributed in the PSID Online Data Center, which will allow users to create customized extracts and codebooks using a cross-year variable index.

PI(s): Robert Schoeni

Co-I(s): Charles Brown, James House, Mick Couper

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

Funded by NIH: National Cancer Institute

Funding Years: 2008-2014

Prostate cancer is a leading cause of cancer death among men, and thousands of men must make treatment decisions every year. Decision making for localized prostate cancer is especially challenging as clinical trials have shown that the standard treatment options of active surveillance, surgery and radiation are comparable in terms of survival. Thus, treatment for prostate cancer is a preference-sensitive decision, with the best choice depending in part on patient attitudes towards the risks and benefits of treatment alternatives. Therefore, ideally the treatment decision will be made with full consideration of patient preferences. As such, it is recommended that patients and their physicians discuss any preferences patients have that might be relevant to the treatment decision. This dialogue is complicated by patients’ lack of experience with sharing in these types of decisions. Additionally, physicians often use medical jargon, making it more difficult for patients to understand their diagnosis and treatment options.  Research is needed to determine the best methods for helping patients communicate their preferences to their physicians so that patient values hold considerable weight in treatment decisions.

The goals of this study are two-fold:

  • To demonstrate to patients some of the issues that might arise during their diagnosis visit that may prevent them from communicating preferences to physicians.
  • To provide solutions that would enable greater patient participation in medical decision making.

PI(s): Angela Fagerlin, PhD and Peter A. Ubel, MD

Co-I(s): John T. Wei, MD; Brian Zikmund-Fisher, PhD; Margaret Holmes-Rovner, PhD; James Tulsky, MD; Stewart Alexander, PhD

Parent grantMichigan Center for Health Communication Research II

Funded by Patient-Centered Outcomes Research Institute (PCORI)

Funding Years: 2014 - 2018

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/Amir Ghaferi

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

Funded by National Institutes of Health.

Funding Years: 2014-2019.

The quality and cost of cancer care varies widely across hospitals and health systems. A large body of research indicates that hospitals with better outcomes tend to have large case volumes and a defined focus on cancer care. These and other data have prompted many to advocate for specialized cancer hospitals, so-called "focused factories", as the best delivery system for achieving more efficient cancer care. However, reforms in the Affordable Care Act, including Accountable Care Organizations (ACO), are moving care away from this model. Although proponents argue that ACOs will improve efficiency by encouraging previously unaligned hospitals and physicians to evolve toward integrated delivery systems, others worry that the intended benefits will not accrue for patients with complex cancer diagnoses, and that ACOs will discourage referrals to hospitals with the greatest cancer expertise. To explore this issue, we propose a study that evaluates comprehensively the relationship between care delivery models and the quality, outcomes, and cost of cancer care in the United States. In the first aim, we will examine the impact of care delivery models on the quality of cancer care. Using national Medicare claims and linked SEER-Medicare data, we will identify cohorts of patients with breast, lung, prostate, and pancreatic cancer. We will then compare the quality of cancer care provided in different care delivery models based on levels of adherence with guideline recommendations and/or nationally-endorsed quality measures. We posit that cancer-focused hospitals will often have higher levels of adherence, due in part to their greater concentration of disease-specific expertise. In the second aim, we will assess the association between care delivery models and outcomes, including operative mortality, complications, hospitalizations, and long-term survival. We hypothesize that patients treated in cancer-focused hospitals will have better mortality outcomes, while greater delivery system integration will correlate with fewer hospitalizations following initial cancer therapy. In the third aim, we will examine cancer-related expenditures for these patient cohorts as they vary over time after diagnosis. We will also assess payments related to different clinical services including surgical procedures, systemic therapy, end-of-life care, and non-cancer-related treatments. We expect that cancer-focused hospitals will achieve savings around episodes of surgical care, and that patients treated in more integrated delivery systems will have lower longitudinal costs for their cancer care. Results from this study will prove invaluable to CMS policymakers and other stakeholders as they debate whether delivery system reforms deemed good for healthcare in general are also good for patients with cancer.

PI(s): David Miller

Co-I(s): Mousumi Banerjee, John Birkenmeyer, Jennifer Griggs, Edward Norton, Yun Zhang

 

Funded by: NIH

Funding Years: 2016-2021

 

There is a fundamental gap in understanding how Mild Cognitive Impairment (MCI) influences treatment and Decision Making for serious illnesses, like Cardiovascular disease (CVD), in older patients. Poor understanding of Clinical Decision Making is a critical barrier to the design of interventions to improve the quality and outcomes of CVD care of in older patients with MCI. The long-term goal of this research is to develop, test, and disseminate interventions aimed to improve the quality and outcomes of CVD care and to reduce CVD-related disability in older Americans with MCI. The objective of this application is to determine the extent to which people with MCI are receiving sub-standard care for the two most common CVD events, Acute myocardial infarction (AMI) and acute ischemic stroke, increasing the chance of mortality and morbidity in a population with otherwise good quality of life, and to determine how MCI influences patient preferences and physician recommendations for treatment. AMI and acute ischemic stroke are excellent models of serious, acute illnesses with a wide range of effective therapies for acute management, Rehabilitation, and secondary prevention. Our central hypothesis is that older Adults with MCI are undertreated for CVD because patients and physicians overestimate their risk of dementia and underestimate their risk of CVD. This hypothesis has been formulated on the basis of preliminary data from the applicants' pilot research. The rationale for the proposed research is that understanding how patient preferences and physician recommendations contribute to underuse of CVD treatments in patients with MCI has the potential to translate into targeted interventions aimed to improve the quality and outcomes of care, resulting in new and innovative approaches to the treatment of CVD and other serious, acute illnesses in Adults with MCI. Guided by strong preliminary data, this hypothesis will be tested by pursuing two specific aims: 1) Compare AMI and stroke treatments between MCI patients and cognitively normal patients and explore differences in Clinical outcomes associated with treatment differences; and 2) Determine the influence of MCI on patient and surrogate preferences and physician recommendations for AMI and stroke treatment. Under the first aim, a health services research approach- shown to be feasible in the applicants' hands-will be used to quantify the extent and outcomes of treatment differences for AMI and acute ischemic stroke in older patients with MCI. Under the second aim, a multi-center, mixed-methods approach and a national physician survey, which also has been proven as feasible in the applicants' hands, will be used to determine the influence of MCI on patient preferences and physician recommendations for AMI and stroke treatment. This research proposal is innovative because it represents a new and substantially different way of addressing the important public health problem of enhancing the health of older Adults by determining the extent and causes of underuse of effective CVD treatments in those with MCI. The proposed research is significant because it is expected to vertically advance and expand understanding of how MCI influences treatment and Decision Making for AMI and ischemic stroke in older patients. Ultimately, such knowledge has the potential to inform the development of targeted interventions that will help to improve the quality and outcomes of CVD care and to reduce CVD-related disability in older Americans.

PI: Deborah Levine

CO(s): Darin Zahuranec, MD & Ken Langa, MD, PhD

MD vs. WebMD: The Internet in Medical Decisions (Dec-10)

With just a simple search term and a click of the mouse, a person can find a large amount of health information on the Internet. What role does the Internet play in how patients make medical decisions? Does using the Internet as a source for information to help patients make informed decisions vary by health condition? Does the Internet substitute for detailed discussions with a health care provider?

Consider the following:

Imagine that you recently visited your health care provider for an annual physical examination. During the exam your doctor told you that you are at the age where you should start thinking about getting a screening test for colon cancer. In this conversation your health care provider explained some of the reasons why you should get screened. At the end of the visit, you had more information about screening tests for colon cancer but had not yet decided whether or not you wanted to get tested.

As you think about how you would make a decision about whether or not to get screened for colon cancer:
 
How important is your health care provider as a source of information about screening tests for colon cancer?
Not at all important (1) (2) (3) (4) (5) (6) (7) (8) (9) (10) Extremely important
 
Would you use, or have someone else use for you, the Internet to find information on screening tests for colon cancer?
 
  • Yes
  • No
  • Don't know
How important is the Internet as a source of information screening tests for colon cancer?
Not at all important (1) (2) (3) (4) (5) (6) (7) (8) (9) (10) Extremely important
 
 
 

How do your answers compare?

In a recent study published in the journal Medical Decision Making, CBSSM investigators Brian Zikmund-FisherMick Couper, and Angela Fagerlin examined Internet use and perceived importance of different sources of information by patients making specific medical decisions.

In this study, US adults aged 40 years and older were asked about how they got information about 9 common medical decisions, including decisions about common prescription medication (for high blood pressure, cholesterol, and depression), cancer-screening tests (for colorectal, breast, and prostate cancer), and elective surgeries (for lower back pain, cataracts, and knee/hip replacement). In addition, they study compared participants' ratings of the Internet as a source of information with their ratings of other sources, such as their health care provider.

So, how did your responses compare to the average adult in this study's population?

Results from this study showed that most patients did not use the Internet to make specific medical decisions like the ones you considered. On average, about 26% of participants made use of the Internet for information to make decisions about colon cancer screening tests and about 47% used it to inform a decision about lower back pain surgery.

Among participants who chose to use the Internet for finding information about specific medical decisions, data show that Internet use varies significantly across different types of medical decisions. Internet users were more likely to use the Internet for information related to elective surgery (36%), such as lower back pain surgery, and prescription medication (32%) than for cancer-screening decisions (22%), such as colon cancer screening.

Another element of this study looked at participants' ratings of different information sources. You are unlike other participants in this study in that you did not consistently rate health care providers as the most important source for information about colon cancer screening and lower back pain surgery. The CBSSM study found that, for both Internet users and nonusers, health care providers were rated highest as a source for information for all 9 decisions studied. Among Internet users, however, the Internet was rated as their 2nd-most important source of information.

The researchers found that Internet use to inform specific medical decisions varied by age ranging from 38% for those aged 40 to 49 years to 14% for those aged 70 years or older. Approximately 33% of 50 to 59 year olds used the Internet to make these medical decisions and 24% for those in the 60 to 69 year age category. This result is consistent with previous research on the demographics of Internet use.

The study authors concluded that the Internet has an impact on people's access to health care information; however, "the data suggest that access is not the same as use, and use for one medical decision does not imply use for all health decisions." In other words, people use the Internet differently depending on the context. The authors end by stating, "Clinicians, health educators, and health policy makers need to be aware that we remain a long way away from having Internet-based information sources universally used by patients to improve and support the process of medical decision making."

For the full text of this article:

Couper M, Singer E, Levin CA, Fowler F, Fagerlin A, Zikmund-Fisher BJ. Use of the internet and ratings of information sources for medical decisions: Results from the DECISIONS survey. Medical Decision Making 2010;30:106S-114S.

 

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