Seeking on a survey to get further insight into practice patterns regarding oral anticoagulation and antiplatelet use in patients with both atrial fibrillation and stable coronary artery disease.
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Could you cope and find happiness if you were living with paraplegia? Think about what it would be like to have paraplegia and to imagine the impact of this disability on your life. Although some aspects of your life will become more difficult, there are ways to make your daily life a little easier.
List something that would help you to adapt physically if you had paraplegia. (For example, if you lost your eyesight, you could learn Braille, and/or use a cane). Just as there are ways to help you to adapt physically to paraplegia, there are also ways to help handle the immediate and long-term emotional reactions. List a strategy that you would use to emotionally cope with having paraplegia.
Please think about the two most upsetting things about developing paraplegia. Do you think these two things would become more or less upsetting over time?
- More upsetting over time
- Less upsetting over time
- Equally upsetting over time
Please rate paraplegia on a scale from 0 to 100, where 0=quality of life as bad as death and 100=quality of life as good as perfect health.
How do your answers compare?
Those who were given the adaptation exercise rated paraplegia much higher, 62. That means considering adaption tends to have people look more favorably on paraplegia than they otherwise would. For most people, the adaptation exercise resulted in higher ratings. Let's take a closer look at the actual study and explore the importance of considering adaptation.
A discrepancy in perceptions of quality of life
When people first think about a disability, it might seem pretty catastrophic. At first glance, you might think that people living with paraplegia must be miserable. Patients who actually have paraplegia, however, report their quality of life to be significantly better than the public estimates that it would be. It appears, then, that there is a discrepancy between the self-rated quality of life of people with paraplegia, and healthy people's estimates of what their quality of life would be if they had this condition.
Why this discrepancy?
CBDSM director Peter Ubel teamed up with researchers Christopher Jepson and George Loewenstein to conduct a series of studies that aimed to explain why this discrepancy exists. Past research has suggested that patients do not overestimate their good mood, which led the researchers to hypothesize that, in fact, non-patients truly underestimate the quality of life experienced by people with disabilities. The researchers speculated about two explanations that could account for this underestimation. One possibility is that non-patients may be subject to a focusing illusion. That is, they might fail to appreciate that not all life domains or life events will be affected by the disability. Another possibility is that non-patients may be failing to consider adaptation, unable to realize how their feelings and their ability to cope will change over time.
In one study, each subject received one of several defocusing tasks in addition to rating paraplegia. For example, one of these tasks asked subjects to rate how much better or worse their life would be with regards to eight specific life events (e.g., visiting with friends). Another task asked subjects to think of five events that took up the largest amount of their time the preceding day and to rate how much better or worse these events would be if they had paraplegia. In a second study, subjects received one of several adaptation exercise in addition to rating paraplegia. One of these was similar to what you read on the previous page, although more extensive. Another had subjects consider their quality of life both 1 month and 5 years after developing paraplegia. In both studies, sujects rated paraplegia either before and after or only after completing an intervention.
The researchers found that none of the defocusing tasks had any effect on ratings of paraplegia. In fact, these tasks actually caused many participants to give lower ratings than they would have otherwise. All of the adaptation exercises, on the other hand, increased subjects' ratings of paraplegia. Taken together, these results support that the tendency of nonpatients to underestimate the quality of life associated with disabilities is not the result of a focusing illusion, but rather the result of failure to consider adaptation.
Read the article:
Disability and sunshine: Can predictions be improved by drawing attention to focusing illusions or emotional adaptation?
Ubel PA, Jepson C, Loewenstein G. American Journal of Psychiatry 2005;11:111-123.
On Thursday, May 19, at 4:30 pm in the Alumni Center, the Inaugural Bishop Lecture in Bioethics was held. Established by a generous gift from the estate of Ronald C. and Nancy V. Bishop, both graduates of the University of Michigan Medical School (Class of '44), the inaugural address was given by John D. Lantos, MD, in a talk entitled, "The Complex Ethical Mess Surrounding Genetic Testing in Children."
Dr. Lantos is the Director of the Children's Mercy Bioethics Center in Kansas City and is a leading voice in bioethics. He has authored or edited five books and numerous publications, including Do We Still Need Doctors?, The Lazarus Case, Neonatal Bioethics, and The Last Physician: Walter Percy and the Moral Life of Medicine. Lantos has discussed designer babies on Larry King Live, medical errors on Oprah, and ethics consultations on Nightline. The Center for Bioethics and Social Sciences in Medicine co-sponsored the event. Over 75 people attended the lecture, which was followed by a reception.
|John D. Lantos, MD|
Dr. Aisha Langford was a VA and CBSSM Postdoctoral Research Fellow, 2013-2015. She received her PhD from the department of Health Behavior and Health Education at the University of Michigan School of Public Health in Ann Arbor. From 2007 -2013, she directed the University of Michigan Comprehensive Cancer Center’s Community Outreach Program. Her research interests include chronic disease prevention and control, health communications, medical decision making, and clinical trial participation. Aisha is from the San Francisco Bay Area and earned her BA from the University of Virginia.
CBSSM recently co-hosted the panel "Incidental Findings in Clinical Exome and Genome Sequencing: The Drama and the Data" featuring Robert C. Green, MD, MPH, Associate Professor of Medicine, Division of Genetics at Brigham and Women’s Hospital and Harvard Medical School, as the keynote speaker. The panel included a lively and interesting discussion.
Panel presenters were Jeffrey W. Innis, MD, PhD, Morton S. and Henrietta K. Sellner Professor in Human Genetics and Director, Division of Pediatric Genetics, and Wendy R. Uhlmann, MS, CGC, Clinical Associate Professor, Department of Internal Medicine and Department of Human Genetics. The panel was moderated by Sharon L.R. Kardia, PhD, Director, Public Health Genetics Program and the Life Sciences and Society Program, School of Public Health, University of Michigan.
This event was co-sponsored by CBSSM, the Department of Human Genetics, Genetic Counseling Program, and Life Sciences and Society, Department of Epidemiology.
Michele Gornick, PhD
VA HSRD Fellow & CBSSM Research Investigator
Title: The public’s preferences for the return of secondary findings identified through genome sequencing: Information and deliberation make a difference
Summary: Genomic sequencing is becoming a part of clinical practice. Existing studies are limited and conclude that people would like unrestricted access to all of their genetic information. However, we do not know the extent to which respondents in these studies took into account the complex scientific and ethical issues that attend genome sequencing. 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.
CBSSM affiliates will be presenting at the WMU Ethics Center Conference: "Bioethics: Preparing for the Unknown" (March 17-18th).
CBSSM Postdoc Kayte Spector-Bagdady: “The Google of Personalized Healthcare: 23andMe and Enabling the Privatization of Genetic Biobanking"
Lan Le, Natalie Bartnik, Michele C. Gornick and Nicole Exe: “Examining the Psychosocial and Ethical Issues Arising from the Identification, Disclosure and Communication of Genomic Results to Patients and Clinicians,” Chair: Raymond De Vries
Other presentations with CBSSM/UM bioethics connections include:
"Patient Understanding and Satisfaction Regarding the Clinical Use of Whole
Genome Sequencing: Findings from the MedSeq Project," Archana Bharadwaj, School of Public Health
"The Voice is As Mighty as the Pen: Integrating Conversations Into Advance Care
Planning Policies," Kunal Bailoor, UM Medical School
Here is the link to the the program: http://www.mywmu.com/s/1428/images/gid2/editor_documents/events/prelimin...
Here is the link to register: http://www.mywmu.com/s/1428/gid2/index.aspx?sid=1428&gid=2&pgid=2900&con...