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Is your well-being influenced by the guy sitting next to you? (Nov-03)

Rating your satisfaction with your life may not be a completely personal decision. See how your satisfaction rating may be influenced by others.

When answering this question, imagine that there is someone in a wheelchair sitting next to you. They will also be answering this question, but you will not have to share your answers with each other.

How satisfied are you with your life in general?

Extremely satisfied 1       2       3       4       5       6       7       8       9       10 Not at all satisfied

How do you compare to the people surveyed?

You gave your life satisfaction a rating of 1, which means that you are extremely satisfied with your life. In a study done where people with a disabled person sitting next to them wrote down their life satisfaction on a questionnaire, they gave an average life satisfaction rating of 2.4, which means they were very satisfied with their lives.

What if you'd had to report your well-being to another person instead of writing it down?

In the study, half the people had to report their well-being in an interview with a confederate (a member of the research team who was posing as another participant). When the participants had to report in this way, and the confederate was not disabled, the participants rated their well-being as significantly better than those who reported by writing it on the questionnaire in the presence of a non-disabled confederate (2.0 vs. 3.4, lower score means higher well-being). The scores given when reporting to a disabled confederate elicited a well-being score that was no different than that when completing the questionnaire in the presence of a disabled confederate (2.3 vs. 2.4).

Mean life satisfaction ratings, lower score means higher satisfaction
Mode of rating well-being Disabled confederate Non-disabled Confederate
Interview (public) 2.3 2.0
Questionnaire (private) 2.4 3.4
What caused the difference in well-being scores?

When making judgments of well-being, people (at least in this study) tend to compare themselves to those around them. This effect is seen more when well-being was reported in an interview than when the score was privately written down, due to self-presentation concerns. A higher rating was given in public so as to appear to be better off than one may truly feel. Note that the effect was only seen in the case where the confederate was not disabled. While well-being ratings were better overall with a disabled confederate, there was no difference between the private and public ratings. Social comparison led to a better well-being judgment, but it appears that the participants were hesitant to rate themselves too highly in front of the disabled person for fear of making the disabled person feel worse.

Why is this important?

Subjective well-being is a commonly used measure in many areas of research. For example, it is used as one way to look at the effectiveness new surgeries or medications. The above studies show that SWB scores can vary depending on the conditions under which they are given. Someone may give a response of fairly high SWB if they are interviewed before leaving the hospital, surrounded by people more sick than they are. From this, it would appear as though their treatment worked great. But suppose that they are asked to complete a follow-up internet survey a week later. Since they do not have to respond to an actual person face-to-face, and without being surrounded by sick people, they may give a lower rating than previously. Is this because the treatment actually made their SWB worse over the longer term, or simply because a different method was used to get their response? The only way to really know would be to use the same methodology to get all their responses, which might not always be feasible. These are important considerations for researchers to keep in mind when analyzing results of their studies. Are the results they got the true SWB of their participants, or is it an artifact of how the study was done? And is there a way to know which measure is right, or are they both right which would lead to the conclusion that SWB is purely a momentary judgment based on a social context?

For more information see:

Strack F, Schwarz N, Chassein B, Kern D, Wagner D. Salience of comparison standards and the activation of social norms: Consequences for judgements of happiness and their communication. British Journal of Social Psychology. 29:303-314, 1990.

Supporting information for: 2012 CBSSM Research Colloquium

Making a baby in the 21st century: An updated user manual

Presenting author: Melissa Constantine, PhD, Postdoctoral Research Fellow, CBSSM

Genetic testing has had a major role in prenatal care for decades.  Aneuploidy screening tests use non-invasive measurements of maternal serum markers to indicate whether a fetus is at increased risk for Down syndrome (trisomy 21) and Edward syndrome (trisomy 18), chromosomal abnormalities for which there are no curative or interventional treatments.  Prenatal screening is often a starting point on a pathway of decision making regarding invasive testing – with associated non-negligible miscarriage risks – and the termination of pregnancy.  As such, decisions to accept or refuse prenatal screening are preference sensitive and patient informed consent or informed refusal is warranted.

In the last year, new methods of genetic analysis for fetal diagnosis for multiple conditions have been introduced for clinical use, and the array of detectable fetal conditions is expanding.  Clinically, the new methods substantially improve on current diagnostic protocols; they are non-invasive, safe, easy to use, have sensitivity and specificity approaching 100% and can be administered as early as 7-10 weeks gestation.  Yet the uptake of a prenatal diagnostic testing for genetic conditions will continue to be a value-laden, preference sensitive choice and the need for informed consent will remain.

Ostensibly, the purpose of offering testing and the subsequent decision is to increase a woman’s control in her reproductive choices.  Some characteristics of the new testing technologies, such as earlier, confirmatory diagnosis, may enhance this control, although research on the process and experience of decision making for prenatal testing has consistently identified several aspects of current testing protocols that actually diminish control and obfuscate the perception of choice.  This presentation will explore how the clinical integration of the new genetic tests may mitigate, or exacerbate, women’s control in decision making and choice for prenatal diagnosis.

Dr. Melissa Constantine earned her Ph.D. in Health Service Research from the University of Minnesota and is currently a Postdoctoral Research Fellow at the Center for Bioethics and Social Sciences in Medicine at the University of Michigan.  Dr. Constantine’s work in measurement and psychometrics includes development and validation of health-related scales such as the Pelvic Organ Prolapse and Incontinence Sexual Questionnaire (PISQ-IR).  Her research interests focus on the ethical and social implications of the clinical integration of prenatal genetic tests.

 

Using community-based participatory research and user-centered design approaches in developing an interactive diabetes decision aid

Presenting authors: Vida A. Henderson, PharmD, MPH, MFA, Center for Health Communications Research; and Deliana Ilarraza

Co-authors: Kathryn LC Barr, MPH; Lawrence An, MD; William Newhouse; Michele Heisler, MD, MPH

Background: Together, community-based participatory research (CBPR), user-centered design (UCD) and health information technology (HIT) offer promising approaches to improve health disparities.

Objectives: This presentation will describe the application of CBPR and UCD principles to the development of iDecide/Decido, an interactive, tailored, web-based decision aid delivered by community health workers (CHWs) to African-American and Latino participants with diabetes in Southwest and Eastside Detroit. The decision aid is offered in English or Spanish and is delivered on an iPad in participants’ homes.

Methods: The overlapping principles of CBPR and UCD used to develop iDecide/Decido include: a community or user-focused approach; equitable academic and community partnership in all study phases; an iterative development process that relies on input from all stakeholders; and a program experience that is specified, adapted, and implemented with the target community.

Results: Collaboration between community members, researchers, and developers are especially evident in the program’s: design concept, animations, pictographs, issue cards, goal setting, tailoring, and additional CHW tools.

Conclusions:  Applying the principles of CBPR and UCD can be successfully employed in developing health information tools that are easy to use and understand, interactive, and target health disparities.

Vida Henderson, PharmD, MPH, MFA, currently works with the behavioral science team at the Center for Health Communications Research where she writes and tests tailored content for multi-media health behavior interventions. She has worked as a clinical pharmacist providing health education and medication counseling to low-income communities; and she has served as a faculty member at Xavier University of Louisiana College of Pharmacy in New Orleans.  Vida has recently received a Master of Public Health degree in Health Behavior and Health Education from the University of Michigan. Her research interests include health communications, spirituality and health, and health disparities.

Deliana Ilarraza is a Community Health Worker for the Community Health and Social Services Center (CHASS)/REACH Detroit Partnership.  Deliana works with community organizations, schools and churches, establishing sites for physical activity classes and conducting diabetes awareness and prevention programs and studies.  She has worked with the National Kidney Foundation of Michigan, the Adolescent Diabetes Health Literacy Study, and the Journey to Health diabetes management and empowerment program, facilitating workshops, teaching curricula, and evaluation.

 

Resident attitudes toward ethical and medical decision-making for neonates born at the limit of viability

Presenting author: Naomi Laventhal, MD, MA, Clinical Lecturer, Department of Pediatrics and Communicable Diseases, CBSSM faculty

Co-author: Stephanie Kukora, MD

Background: Existing guidelines call for consistent resuscitation practices for extremely preterm infants based on epidemiologic data, but appropriate frameworks for value-driven decision-making in this context are still debated. Neonatologists’ attitudes are well-studied, but those of resident physicians are poorly understood.

Objectives: To describe residents’ knowledge of our practices, attitudes toward gestational age (GA) based resuscitation thresholds, and ethically relevant considerations for decision-making at the margin of gestational viability.

Methods: We surveyed our pediatric residents anonymously, asking them to identify current practices and ideal GA thresholds for offering and insisting on resuscitation, and the importance of contributing factors in decision-making for extremely preterm infants. Results: Response rate 61% (n =36).  Many (62%) residents correctly identified 23 weeks as the lower threshold for resuscitation in our NICU (range 21 - 24), despite finding our practices inconsistent (84%) and unclear (89%). Fewer (21%) correctly identified 24 weeks as the latest GA that parents may refuse resuscitation (range 23 - 42, 32% 25 weeks, 21% 26 weeks, 16% >26 weeks). Most disagreed with our current practices, identifying a preferred older GA for the lower threshold: 48% at 24 weeks, and 18% at 25 weeks (range 23-27). Most thought the upper threshold for elective resuscitation was too low, with 24% and 28% indicating 25 and 26 weeks, respectively, and 33% ≥28 weeks (range 24-40).  Compared to current considerations, they reported scientific evidence to be undervalued (p<.0001), and attendings’ personal beliefs to be overvalued (p<.0001). Responses trended toward family social and financial situations being undervalued. 

Conclusions: Our residents recognize decision-making for extremely preterm infants that is supported by known epidemiology, but attribute it to physicians’ personal beliefs, rather than scientific evidence. This suggests educational deficits, and a need for further study in a larger sample.  Preferences for a higher GA threshold for initiating resuscitation and a wider GA range in which parents may refuse it may reflect disproportionate pessimism about preterm infants.

Dr. Naomi Laventhal joined U-M in 2009, after completing her residency in pediatrics, fellowships in neonatology and clinical medical ethics, and a master’s degree in public policy at the University of Chicago.  In the Brandon Neonatal Intensive Care Unit at C.S. Mott Children’s Hospital she cares for critically ill newborns, provides prenatal consultation for parents expecting to deliver premature infants, and teaches neonatal-perinatal medicine and bioethics to residents and medical students.  Her research is in neonatal clinical ethics, and is currently focused on decision making for infants born at the margin of gestational viability.   Dr. Kukora is a resident in Pediatrics, having completed her MD at the University of Texas Southwestern Medical School.

 

Distrust of pediatricians’ sleep advice: Focus group results from the Project for African American Infant Safety

Presenting author:  Kathryn L. Moseley, MD, MPH, Assistant Professor, Department of Pediatrics and Communicable Diseases, CBSSM faculty

Co-author: Jennifer C. Sanchez, MPH

Background: Sudden Infant Death Syndrome (SIDS) is the number one cause of death for infants from birth to one year of age and can be reduced by placing the infant in the supine sleeping position. Although the number of SIDS-related deaths is decreasing, it still remains a significant issue, especially in the African American population where the supine sleep position is used less.  PrAAIS (Project for African American Infant Safety) is a randomized controlled trial promoting infant supine sleep among African American parents of newborns in Detroit, Michigan through the creation and distribution of tailored health educational materials.



Methods: We conducted six exploratory focus groups with a total of 29 African American parents of young infants to identify barriers and facilitators to infant supine sleep. 

Results: A prominent barrier that emerged during data analysis was distrust of physicians’ advice about supine sleep. This distrust stemmed from: a) skepticism of the validity of information provided by childless pediatricians, b) the paternalistic instructional style of pediatricians’ sleep advice (“you must do this”), and c), the frequent changes in sleep position recommendations that are not consistent with mothers’ lived experience, where the only rationale provided is that “studies show…”

Discussion: Parental distrust is not surprising, given these assessments.  Our results suggest that physicians may become more trustworthy sources of information about supine sleep if they: a) openly acknowledge parental confusion about the guidelines, b) provide concrete advice on methods to successfully achieve infant supine sleep in a more participatory manner, and c) place the danger of ignoring the guidelines in context through a discussion of both the relative and absolute risk to their infant of dying from SIDS or suffocation.

Dr. Kathryn Moseley is a clinical bioethicist as well as board-certified pediatrician and neonatologist.  For eleven years, Dr. Moseley was the Director of Bioethics for the Henry Ford Health System in Detroit, Michigan, overseeing a busy ethics consultation service.  She joined U-M in 2002 with a joint appointment in the Program in Bioethics and the Child Health Evaluation and Research Unit to conduct research on the racial differences in health care decision-making she discovered doing clinical ethics consultations and how those decisions are affected by culture and trust.  She recently received a grant from the NIH to conduct a 5-year trial of a culturally-tailored intervention to decrease the incidence of Sudden Infant Death Syndrome in the African American community.  She co-chairs the Pediatric Ethics Committee and directs the ethics consultation service at C.S. Mott Children’s Hospital.

 

What’s in a name? The effect of a disease label on parents’ decision to medicate a colicky infant

Presenting author: Laura D. Scherer, PhD, Postdoctoral Research Fellow, CBSSM and VA

Co-authors: Brian K. Zikmund-Fisher, PhD; Angela Fagerlin, PhD; Beth A. Tarini, MD

It is common for physicians to diagnose infants who have excessive regurgitation and associated crying with Gastroesophageal Reflux Disease (GERD).  From 1999-2004 there was a 7-fold increase in the use of prescription medications to treat GERD in infants <1 year old (Hassal, 2012).  However, clinical trials have shown that existing medications are no better than placebo in treating these symptoms (Orenstein et al., 2009) and the majority of infants grow out of this behavior without medical intervention.  Given this, it is unclear why medical treatment of GERD persists.  One possibility is that the way that physicians frame their assessment of the symptoms influences parents’ perceived need to medicate their child.  In the present study, we examined how a doctor’s explanation—in particular, the doctor’s use of the diagnostic label “GERD”—influences parents’ desire for medical interventions. To explore this question, we asked parents in the waiting room of a general pediatrics clinic to read a scenario (2x2 randomized design) in which they were asked to imagine they had an infant who cried and spit up excessively.  The scenario then described a pediatric appointment in which the infant either received a formal diagnosis of GERD, or not.  In addition, half of parents were explicitly told that existing medications are ineffective at treating the symptoms, or not.  Results showed that the presence of a GERD diagnosis made parents more interested in medicating their infant, even when they were explicitly told that the medications do not work.  Moreover, the GERD diagnosis made parents less likely to think that their infant would get better without medication, relative to parents who received no diagnosis.  In conclusion, physician labeling of normal infants as “diseased” may increase parents’ willingness to medicate their child.

Dr. Laura Scherer is a Postdoctoral Research Fellow at the VA Center for Clinical Management Research and the Center for Bioethics and Social Sciences in Medicine at the University of Michigan.  She received her PhD in Social Psychology from Washington University in St. Louis, and will soon be an Assistant Professor of Psychology and Health Sciences at the University of Missouri in Columbia.  Her interests include the impact of emotions and intuition on medical decision making, and the psychological phenomena that lead to medicalization and overtreatment.

 

Cracking the code: Ethical issues involved in the decision to undergo genetic testing

Presenting author: Lauren B. Smith, MD, Assistant Professor, Department of Pathology, CBSSM faculty

Advances in molecular diagnostics have led to the capability of sequencing an individual’s germline DNA or exome for as little as $1000. An ethical analysis and discussion of genetic testing, both historically and as it relates to this new technology, will be presented.  The discussion will include factors related to the decision to undergo testing, possible benefits and harms, and issues surrounding research protocols and commercial testing services.  The discussion will include an overview of testing for Huntington disease, breast-ovarian cancer syndromes, and Alzheimer’s disease as illustrative examples.

Dr. Lauren Smith is an Assistant Professor in the Department of Pathology at the University of Michigan, specializing in hematopathology.  She has been a member of the University of Michigan Adult Ethics Committee since 2005 and also serves as a member of the Michigan State Medical Society Ethics Committee.  Her research interests include ethical issues in clinical medicine and pathology.

 

The myth of individual risk    

Presenting author: Ralph Stern, MD, PhD, Clinical Assistant Professor, Department of Internal Medicine

Co-author: Zachary Goldberger, MD

Medical decision-making often relies upon clinical prediction models to estimate individual risk.  Morbidity and mortality predictions (e.g.  Framingham for ischemic heart disease in healthy patients or APACHE for mortality in critically ill patients) are often used for treatment decisions (e.g. statins, aspirin, hypoglycemic therapy).  As such, their prognostic value carries particular importance for shared decision-making with patients and their families.  However, it remains underappreciated that clinical prediction methods were developed to analyze disease in populations, not individuals.  The notion that such models can give individual patients a unique probability of a health outcome is highly debatable.  When the goal is allocating treatments to high risk subgroups to reduce costs, these models may be useful.  But when the goal is allocating treatments to high risk individuals, none of the models should be the sole basis for clinical decisions.

 Because risk cannot be measured in an individual, there is no way to experimentally verify any of the individual predictions provided by a model.  This can only be achieved by assembling a group of patients similar to the individual in question.  That each of these groups may have a different risk means there is no such thing as individual risk, an issue identified by John Venn in 1866 and known as the reference class problem.  Different models may yield substantially different individual risk estimates.  This is an inherent limitation, which is not eliminated by inclusion of more risk factors in the model or other proposed solutions.

While these models are widely used, it remains unclear how best to apply them.  Clinicians who use these models to make patient care decisions need to be aware of their limitations. 

Dr. Ralph Stern is an Assistant Professor of Medicine in the divisions of Cardiovascular Medicine and Molecular Medicine and Genetics.  His clinical interests are hypertension and medical and cancer genetics.  His research interests include risk stratification and the clinical utility of new risk factors.

Dr. Zachary Goldberger is a 4th year cardiology fellow and Robert Wood Johnson Clinical Scholar.  His research interests center on antiarrhythmic therapy.  Specifically, he is interested in understanding the attitudes and experiences of patients receiving implantable cardioverter-defibrilators (ICDs), and creating a decision aid to enhance shared decision-making for patients receiving ICDs for primary prevention of sudden cardiac death.  He is also studying utilization of antiarrhythmic therapy and drug toxicity, as well as patterns of care in resuscitation during in-hospital cardiac arrest.  His teaching interests center on improving ECG literacy and cardiac physical examination skills in trainees.

 

The swinging gate: Genetic testing and ethical issues

Presenting author: Wendy R. Uhlmann, MS, CGC, Clinical Assistant Professor, Departments of Internal Medicine and Human Genetics

Advances in genetic testing have resulted in an exponential increase in the number of genetic tests that are available.  Given the rapid pace of genetic test introduction, few tests have practice guidelines.  As a result, healthcare professionals who order these tests and the genetic testing laboratories have gate-keeper roles with genetic testing.  Genetic tests, unlike most medical tests, present some unique considerations given the potential familial implications in addition to the fact that genetic testing is a moving target.  Communication of genetic information and genetic test results along with medical record documentation of this information raises several ethical and policy issues, including: Who needs to know?  What information should be communicated?  Who is obligated to inform whom?  What factors need to be considered in the communication of genetic information?  Cases from the University of Michigan Medical Genetics Clinic will be used to illustrate ethical issues that clinicians encounter with patients pre-testing and post-testing, including: competing obligations, testing children, carrier testing for rare autosomal recessive genetic conditions, predictive genetic testing and broader insurance issues.  Weighing risks and benefits and resolving ethical issues with genetic testing decisions and communication of test results involves consideration of the core ethical principles in addition to assessment of both professional and patient obligations.  Careful consideration is needed in weighing competing obligations.  Understanding ethical issues currently experience din genetics clinics will help guide the handling of similar and novel future challenges that will arise with advances in genetic testing and genomic medicine.

Wendy R. Uhlmann, MS, CGC, is the genetic counselor/clinic coordinator of the Medical Genetics Clinic at the University of Michigan.  She is a Clinical Assistant Professor in the Departments of Internal Medicine and Human Genetics and an executive faculty member of the genetic counseling training program.  Wendy Uhlmann is a past president of the National Society of Genetic Counselors and currently serves on the National Center for Biotechnology Information (NCBI) Board of Scientific Counselors (BOSC), Medical Genetics Working Group.

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.

 

Dr. Jeremy Sussman spoke at the Michigan Center for Diabetes Translational Research (MCDTR) Symposium. The MCDTR held its annual symposium on May 6, featuring a keynote presentation by Dr. Elbert Huang. This year the symposium was held at NCRC, Building 10 Auditorium (presentations) and building 18, lower level dining area (for poster session and buffet lunch). There was a poster presentation area where one can view the displays during and after lunch. RSVP to Pam Campbell at pamcamp@umich.edu.

CBSSM Seminar: Susan Goold & Zachary Rowe (DECIDERS Project)

Thu, December 15, 2016, 3:00pm
Location: 
NCRC, Building 16, Room 266C

Susan Goold, MD, MHSA, MA
Professor of Internal Medicine, Medical School
Professor of Health Management and Policy, School of Public Health

Zachary Rowe
Executive Director of Friends of Parkside (FOP)

Title:  Evaluation of CHAT as a tool for engaging communities in priority setting

Abstract:  Engaging minority and underserved communities in setting research priorities could make the scientific research agenda more equitable and more responsive to their needs.  This presentation evaluates CHAT, a serious game, to prioritize health research based on feedback from 47 focus groups (N=519) across Michigan.

Supporting information for: 2015 CBSSM Research Colloquium and Bishop Lecture (Lawrence O. Gostin, J.D., LL.D Hon.)

Natalie Bartnik, MPH, Research Associate, HBHE Genetics Research Group, UM School of Public Health: "Why, how and when oncologists disclose genome sequencing results in clinical practice"

Abstract: Integrating an individual’s clinical history with genome sequencing data can inform diagnostic and treatment strategies tailored to the patient’s mutational landscape. In oncology, precision medicine offers the additional opportunity to characterize novel gene targets for patients with cancer who lack known or viable targets. It is not known whether oncologists communicate sequencing results to patients, or how and why oncologists integrate sequencing profiles into clinical practice. In a survey of 43 oncologists who referred 111 patients to the MIONCOSEQ Study, we found that nearly a quarter of oncologists planned to make changes to their patient’s treatment based on genomic findings. Prominent barriers to the integration of sequencing results into clinical practice were a lack of findings with perceived clinical significance, as well as limitations in locally available clinical trials. The majority of physicians planned to communicate sequencing results to their patients, mostly via in-person clinic visits.


Michele Gornick, PhD, MICHR PTSP Postdoctoral Fellow, VA HSRD Fellow & CBSSM Research Investigator: "Information and deliberation make a difference: The public’s preferences for the return of secondary genomic findings"

Abstract: As genome sequencing becomes a part of clinical practice, how best to disclose sequencing results –including secondary findings-- raises significant issues. Expert consensus panels have been convened to provide recommendations, but what do members of the public want? In order to address this gap, we organized a deliberative democracy (DD) session to educate members of the public on genome sequencing, to engage them in dialogue about the benefits and risks of the clinical implementation of this technology, and to elicit their informed perspectives about policies governing the return of secondary findings. A significant shift in participants’ perspectives on the disclosure of adult onset conditions from the baseline survey, that remained stable after a month follow-up (response rate = 87%; Χ2(1, N=60) = 4.26, p =0.039), suggests the value of education and deliberation for the appreciation of the scientific and ethical complexities of genome sequencing.


Aaron Scherer, PhD, CBSSM Postdoctoral Fellow: "Elephants, Donkeys, and Medicine: Political Differences in Health Risk Perceptions and Adherence to Medical Recommendations"

The relationship between political ideology and health is often relegated to discussions of health care policy. But what if political ideology affects much more than health care policy preferences? I will discuss two studies that provide some initial evidence that political ideology influences our perceptions of health risks and adherence to medical recommendations. In one study examining risk communication strategies, political ideology was related to differences in perceptions of Ebola and influenza risk, as well as willingness to vaccinate against these two infectious diseases. In a second study examining beliefs in medical conspiracies, political ideology was related to differences in self-reported adherence to doctor’s recommendations and prescription use. The psychological differences between conservatives and liberals that may help illuminate why these differences exist will be discussed.

Stephanie Kukora, MD and Nathan Gollehon, MD, Fellows, Division of Neonatal-Perinatal Medicine, Department of Pediatrics, UM Mott Children’s Hospital: "Epidemiology of outpatient prenatal consultation: implications for decision-making and perinatal outcomes"

Abstract: Neonatologists provide anticipatory guidance and support decision-making for complicated pregnancies, in which poor/ambiguous prognostication can lead to over-/under-treatment.  Referral to antenatal palliative care consultation (PCC) is not standard; little is known about the basis for referral, and their role in perinatal decision-making.

117 women had outpatient neonatology consultation, with decision-making for 146 fetuses with multiple anomalies/genetic, single major anomaly, or obstetric complications. 18(12%) were given a prognosis of uniform non-survival and 41(28%) had anticipated survival with intervention. Remaining fetuses were given unknown prognoses 87(60%), some qualified “likely survivable” 17(12%) or “likely poor” 33(23%). Most prognoses aligned with outcomes, though outcomes were better than predicted in 3(2%) infants and worse in 10(7%).  Mismatches between prognosis and decision occurred in 10(7%) infants who were provided resuscitation despite “non-survival” or “likely poor” prognoses.

23 (19.7%) of the 117 mother/fetus pairs received antenatal PCC.  Prognoses included: 11(48%) non-survivable, 11(48%) unknown but likely poor, 1(4%) survivable with surgical intervention. Fetal/neonatal outcome included: fetal demise 5(22%), in-hospital death 16(70%), survival to discharge 2(9%). 22 maternal/fetal pairs with 3(13%) non-survivable and 19(86%) likely poor prognoses were not referred, but had similar outcomes: fetal demise 4(18%), in-hospital death 15(68%), survival to discharge 3(14%). Those with PCC were more likely to choose comfort-care than those without (61% vs. 18%, p < 0.01). Of non-survivors, 94% with PCC died within 4 days while 27% without PCC received >14 days of intensive care.

We identified relatively few cases of mismatch between prognosis and outcome; however, rare cases of prognostic failure warrant caution. Although allowing parents to pursue aggressive neonatal care respects autonomy, it may delay rather than prevent death. Long-term outcomes with and without PCC were similar for infants with poor prognoses, though non-survivors with PCC were more likely to have a comfort care plan and shorter time to in-hospital death.


Minnie Bluhm, PhD, MPH, Assistant Professor, School of Health Sciences, Eastern Michigan University: "Oncologists' decisions about administering late chemotherapy: What makes it so difficult?"

Abstract: Background. An estimated 20-50% of incurable cancer patients receive chemotherapy in the last 30 days of life, although little data support this practice.  Continued use of chemotherapy typically precludes hospice enrollment.  It may also result in more symptoms, increased use of aggressive treatments, and worsening quality of life.  Despite this, few studies have explored oncologists' rationales for administering chemotherapy during the last weeks of life.  The purpose of this study is to examine factors that oncologists report influence their decisions about late chemotherapy.

Methods. In-depth individual interviews were conducted with 17 oncologists using a semi-structured interview guide.  Interviews were audio-recorded and transcribed verbatim.  Transcripts were coded and content analyzed for themes and patterns.

Results.  Three key findings emerged.  1) Clinical factors drive oncologists’ late chemotherapy decisions when they point to clear treatment choices, along with patient preferences.  When clinical factors are ambiguous, non-clinical factors become more salient.  2) Late chemotherapy is patient-driven.  It is used to palliate physical and emotional symptoms and maintain patient hope, even when physical benefit is not expected.  3) Caring for dying patients is difficult and impacts oncologists and their treatment decisions.  Difficulties also cited as influences favoring treatment include: emotional exhaustion, difficulty communicating about stopping or not starting chemotherapy, overwhelming sense of responsibility for life and death, feeling badly about the limits of oncology to heal, and prognostic uncertainty.

Conclusions.  Findings reveal a nuanced understanding of why it can be so difficult for oncologists to refuse chemotherapy to patients near death.  Doing so adds to the existing burden of caring for dying patients.  Therefore, at times, oncologists prescribe chemotherapy to simply help everyone feel better, regardless of expected clinical benefits or costs.  Future work is needed on the impact of caring for dying patients on oncologists and on supportive interventions that promote optimal treatment decisions.

Danielle Czarnecki, PhD Candidate, UM Department of Sociology: "Moral Women, Immoral Technologies: How Devout Women Negotiate Maternal Desires, Religion, and Assisted Reproductive Technologies"

Abstract: Catholicism is the most restrictive world religion in its position on assisted reproductive technologies (ARTs). The opposition of the Church, combined with the widespread acceptability of ARTs in the U.S., creates a potentially profound moral dilemma for those who adhere to Church doctrine. Drawing on interviews from 33 Catholic women, this study shows that devout women have different understandings of these technologies than non or less religious women. These differences are rooted in devout women’s position of navigating two contradictory cultural schemas (Sewell 1992) —“religious” and “secular”—regarding the meaning of reproductive technologies in the contemporary U.S. Religious schemas provide devout women with different cultural resources that allow them to develop strategies to avoid the use of ARTs. Yet they must still reckon with the ideal of biological parenthood. I show how devout women draw on religious doctrine to find value and meaning in their suffering , to move beyond biological motherhood,  and to ultimately achieve a moral femininity. While religion increases the burden of reproduction for devout women, it also provides the cultural resources to resist the financial, emotional, and physical difficulties experienced by women who use ARTs.


Uchenna Ezeibe, MD, Resident Physician, UMHS Department of Pediatrics & Communicable Diseases: "Pediatric Ethics Consultation Service at a Tertiary Hospital: A Retrospective Review"

Abstract: Background: Published data about hospital ethics consultation services focus primarily on adult patients. There is little information on pediatric ethics consultations – specifically whether patient demographics were related to type and prevalence of consults.

Objective: To review recent ethics consults at a large children’s hospital and explore associations with patient demographics.

Design/Methods: We reviewed ethics consults between 7/1/2009 – 12/31/2013 at a Midwest children’s hospital. We used Armstrong Clinical Ethics Coding System 2013©, modified for pediatrics, to code consults. We collected data on patient race, age, and insurance status (private vs. public) as a proxy for socioeconomic status. We used Microsoft Excel 2013© to generate descriptive statistics.

Results:, approximately 321,713 inpatient visits, and 29 ethics consults were reviewed. Most consults (72.5%) concerned inpatients. Of these, 82% originated from 1 of 3 ICUs (neonatal, pediatric, and pediatric-cardiothoracic). The most common reasons for consultation were: 1) treatment-based decision-making (31%),); 2) end-of-life decisions (28%); & 3) substitute decision-making (24%).  The mean patient age for treatment-based and substitute decision-making consults were similar at 6.8 and 7.9 years, respectively.  Younger patients (mean age: 2.4 years) were involved in end-of-life dilemmas. Patients receiving consults differed from the general patient population in that fewer patients with consults were White (52% vs. 71%) and more were  African-American (34.5% vs 9%).  Approximately 76% of patients with ethics consults had public insurance compared to approximately 29% amongst all inpatient admissions.

Conclusion:  In this single-center retrospective review, we found that African-Americans and patients with public insurance were over-represented in receipt of ethics consultations compared to the general patient population. We also found that dilemmas about end-of-life decisions were more common for younger children. Given our small numbers, strong conclusions cannot be drawn from this data. Nevertheless, our findings do point to areas where communication between family and medical team can be improved.
 

Dr. Lewis B. Morgenstern was one of the 21 Med School faculty/staff members who received honors through the Dean's Awards program. He received the Clinical and Health Services Research Award, which recognizes a faculty member or group of faculty members who are identified as having made outstanding contributions to the Medical School in clinical or health services research. You can read the press release here.

CBSSM Working Group Meeting-Suraj Suresh, MD /Anoop Prabhu, MD

Wed, May 30, 2018, 4:00pm
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Location: 
NCRC bldg 16 266C

Suraj Suresh, MD, House Officer, Internal Medicine and Anoop Prabhu, MD, Gastroenterology, Internal Medicine, will be seeking feedback on some survey questions, as well as guidance on creating a data abstraction sheet to best facilitate statistical analysis for a study examining the utility of Clinical Video Telehealth (CVT) prior to endoscopic procedures.

Should this patient get a liver transplant? (Nov-08)

There aren't enough donor organs to go around for patients who need aliver transplant. This sometimes forces doctors to make tough choices.If you were the doctor, how would you decide in the following scenario?  There aren't enough donor organs to go around for patients who need a liver transplant. This sometimes forces doctors to make tough choices. If you were the doctor, how would you decide in the following scenario?Suppose there is a person who develops acute liver failure (ALF). While waiting for a liver transplant, this person gets sicker and sicker. When an organ is finally available, the chance that this person will survive WITH a transplant is only 42% at five years after the transplant. Since the average survival for most patients who receive a liver transplant is 75% at five years, the doctor wonders if it would be better to save the liver for someone else. Two possible ethical principles may guide the doctor in making this decision. 

Using the principle of URGENCY, the doctor would give the first available organ to the sickest patient on the transplant waiting list, the ALF patient, because she/he is otherwise likely to die within a few days.

Using the principle of UTILITARIANISM, the doctor would try to maximize the quality and quantity of life of all the people on the transplant list. Let's say there are 25 other patients currently on the waiting list, and transplanting the ALF patient increases their risk of death by 2% each, for a cumulative harm of 50%. Since this harm of 50% is more than the benefit to the ALF patient (42%), the liver should be saved for someone else on the list.

A third possibility is for the doctor to weigh both URGENCY and UTILITARIANISM in making a decision about a transplant.

If you were the ALF patient's doctor, what would you base your decision about a transplant on?
 
  • URGENCY (sickest patient on the list gets preference)
  • UTILITARIANISM (maximize benefit for the entire waiting list)
  • A combination of URGENCY and UTILITARIANISM

How do your answers compare?

There's no absolutely right or wrong answer in this case—the choice depends on which of several competing ethical principles or which combination of principles you follow. In choosing a combination of URGENCY and UTILITARIANISM, you've decided to try to balance the needs of the sickest patient with the needs of all the people on the transplant waiting list.

CBDSM researcher Michael Volk, MD, is the lead author on a recent article that tackles difficult decisions like this one. Volk and his colleagues examined a method to incorporate competing ethical principles in a decision analysis of liver transplantation for a patient with ALF. Currently, liver transplantation in the United States is determined by the principle of “sickest first," with patients at highest risk for death on the waiting list receiving first priority. In other words, the principle of URGENCY is paramount. However, most experts agree that, given the limited supply of organs, there should be a cutoff for posttransplant survival below which transplantation is no longer justified.

Where does society draw this line? And what framework can we use for ethical guidance?

Decision analysis of resource allocation would utilize the principle of UTILITARIANISM, to maximize the broad social benefit. But surveys of the general public have shown that most people prefer to temper utilitarianism with other considerations, such as equal opportunity, racial equity, and personal responsibility. Another factor that might be considered is the principle of fair chances. This is the idea that patients who have not had a chance at a liver transplant should receive priority over those who have already had once chance at a transplant.

Volk constructed a mathematical model (Markov model) to test the use of competing ethical principles. First he compared the benefit of transplantation for a patient with ALF to the harm caused to other patients on the waiting list, to determine the lowest acceptable five-year survival rate for the transplanted ALF patient. He found that giving a liver to the ALF patient resulted in harms to the others on the waiting list that cumulatively outweighed the benefit of transplantation for the ALF patient. That is, using UTILITARIANISM as the sole guiding ethical principle gave a clear threshold for the transplant decision: if the ALF patient did not have a five-year survival rate of at least 48%, she/he should not receive a transplant under this principle.

But UTILITARIANISM is not always the sole guiding ethical principle. When Volk adjusted the model to incorporate UTILITARIANISM, URGENCY, and other ethical principles such as fair chances, he got different thresholds. Depending on the combination of ethical principles used, Volk and his colleagues have shown that the threshold for an acceptable posttransplant survival at five years for the ALF patient would range from 25% to 56%.

The authors of this study conclude:

"Our model is an improvement over clinical judgment for several reasons. First, the complexity of the various competing risks makes clinical decision making challenging without some form of quantitative synthesis such as decision analysis. Second, a systematic approach helps ensure that all patients are treated equally. Most important, this study provides moral guidance for physicians who must simultaneously act as patient advocates and as stewards of scarce societal resources."

Volk ML, Lok ASF, Ubel PA, Vijan S, Beyond utilitarianism: A method for analyzing competing ethical principles in a decision analysis of liver transplantation, Med Decis Making 2008;28, 763-772.

Online: http://mdm.sagepub.com/cgi/content/abstract/28/5/763

More information:

Beyond utilitarianism: A method for analyzing competing ethical principles in a decision analysis of liver transplantation.
Volk M, Lok AS, Ubel PA, Vijan S. Medical Decision Making 2008;28(5):763-772.

 

Jeffrey Kullgren, MS, MD, MPH

Faculty

Dr. Jeff Kullgren is a Research Scientist in the Center for Clinical Management Research at the VA Ann Arbor Healthcare System and an Assistant Professor in the Department of Internal Medicine at the University of Michigan Medical School and Institute for Healthcare Policy and Innovation.  Dr.

Last Name: 
Kullgren

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