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Mon, October 02, 2017

Sarah Hawley, Brian Zikmund-Fisher, and Reshma Jagsi are co-authors of a recent study published in Medical Decision Making, which was highlighted in MHealth Lab. Their study found that talking to clinicians is the best way for breast cancer patients to understand their recurrence risk. They also found that clinician discussions about recurrence risk should address uncertainty and the relevance of family and personal history. Kamaria Lee is first author of the article.

Supporting information for: 2016 CBSSM Research Colloquium and Bishop Lecture (William Dale, MD, PhD)

Katrina Hauschildt, MA, PhD Candidate, Department of Sociology: “Language and Communication as Professionalization Projects in Clinical Ethics Consultation”


Although sociologists have examined the field of bioethics broadly, less empiric research has explored the process of clinical ethics consultation (CEC) in practice. This paper seeks to describe how UMHS’ CEC service focuses on communication, language, and terminology in professionalizing their membership and broadening the scope of their services. The CEC service established a specific communication standard for its written recommendations that emphasizes specificity and clarity for patients and their families, other providers, and members of the ethics committee. By identifying and reinforcing the importance of language and word choice in their own recommendations, newer members of the CEC are “trained” in how to craft recommendations, develop a specific jargon, and establish communication standards that differ from those used in other aspects of medical practice and documentation. The CEC service is often involved in addressing a variety of communication issues that arise in patient care, and these problems are thusly considered within the professional scope of the CEC service. By establishing the CEC service as an appropriate resource for dealing with communication issues between patients and their care team, the CEC service expands the professional boundaries of their work beyond strictly ethical expertise. The implications of these processes for professionalization and communication may be applicable to CEC services more broadly.


Devan Stahl, PhD, Assistant Professor of Clinical Ethics, Center for Ethics and Humanities in the Life Sciences, MSU: "Is there a right not to know?"


There is a widespread presumption within medicine that terminally ill patients have a “right not to know” their prognosis. Guidelines for giving bad news (SPIKES; ABCDE) all require that the patient be asked first. There may be a dark side to this practice, however: terminally ill patients’ ignorance or denial of their prognosis too often lasts to the very end, one important factor discouraging timely referral and use of palliative and hospice care. Because of a possible link between a right not to know one’s prognosis and the aggressive treatment that patients with advanced illness too often receive at the end of life, the claim that there is a right not to know needs much more serious examination than it has received.

The authors argue that patients with advanced illness do not have a right not to know their prognosis. Withholding prognostic information in deference to a right not to know impedes patients’ capacity to make informed autonomous decisions about their treatment, encourages denial, and increases the likelihood of poor end of life care.

Chithra Perumalswami, MD MSc, Robert Wood Johnson Foundation/Veterans Affairs Clinical Scholar: "Insurance Status of Elderly Americans and Location of Death"


Context:  The decision to forego curative treatments (which includes the Medicare Skilled Nursing Facility Medicare benefit) is not financially neutral for terminally ill patients who do not have concurrent insurance (Medicaid or private insurance) in that they are subsequently asked to pay for room and board of the nursing home if they choose the Medicare hospice benefit.  The association between insurance status and location of death is currently unknown.  
Purpose: To determine whether the concurrent insurance status with Medicare (Medicaid vs. private insurance) of decedents is associated with location of death in a nationally representative survey of elderly Americans.
Methods: Longitudinal analysis of 7,979 decedents aged 50 years or older in the Health and Retirement Study from 2000-2010 (6 biennial waves). We examined associations between insurance status and location of death (home, hospital, nursing home, hospice) using multinomial logistic regression models and adjusting for demographic, socioeconomic, and clinical variables.
Results:  Decedents with dual eligible insurance before or at the time of death were significantly more likely to die in a nursing home than to die in a hospital (relative risk ratio (RRR) 2.6; 95% CI, 1.9-3.6, p<0.001). 
Those dying in a nursing home tended to be unpartnered (widowed, separated or divorced, never married), cognitively impaired or with dementia. Elderly Americans less likely to die in a nursing home were blacks and Hispanics, individuals with cancer, and those with the highest wealth.
Conclusions:  Dual eligible patients are substantially more likely to die in a nursing home than a hospital, and therefore may miss out on valuable services at the end of life, including hospice care. This study may have several implications for current proposed Medicare policy changes to allow patients access to both curative care and hospice care at the same time. 

Lauren B. Smith, MD, Associate Professor, Department of Pathology/Ginny Sheffield, UM Medical Student (M3): "Special treatment for the VIP patient:  Is it ethical?  Is it dangerous?"


The care of VIP patients is often prioritized at medical centers and this prioritization may lead to disparate access to care and patient safety issues. VIP patients may be donors, celebrities, or other physicians. Allowing VIP patients access to earlier care or “special treatment” not only raises social justice issues, but also has been shown to lead to medical error and suboptimal treatment. Ethical considerations will be discussed and recommendations will be presented.

Naomi Laventhal, MD, MA, Assistant Professor, Department of Pediatrics and Communicable Diseases: "Roman Charity Redux: The Moral Obligations of the Breastfeeding Physician"


Female physicians must often reconcile the seemingly contradictory goals of valuing the health and well-being of their patients above all else, and actively mothering young children. One of the fundamental ethical precepts in medicine is for the physician to put the best interests of her patient ahead of her own.  For example the Fellowship Pledge of the American College of Surgeons states, “I pledge . . . to place the welfare and the rights of my patient above all else.” The challenge of weighing the needs of one’s own children against those of a patient is painfully acute for the breastfeeding physician. Is it ethically permissible to leave a busy clinic - or a patient in the under anesthesia in the operating room - in order to express breastmilk? Pragmatic strategies, such as mandates for appropriate space and time to pump, offer modest gains. However, we will suggest the need to re-envision the concept of “patient-first”, which is a vestige of the patriarchal hegemony that gave rise to our modern medical ethos, whereby nursing mothers are highly disadvantaged and virtually unable to reach the highest moral ideals of the profession.  Is the “right” to breastfeed absolute, or if should it be superseded by the needs of the patient? We will explore whether this issue is deeply personal, to be reconciled by affected individuals, or warrants an “outside-in” approach in which  physicians and bioethicists collectively and more philosophically consider whether and how to support women who choose to work and breastfeed.

Archana Bharadwaj, Graduate Student, UM School of Public Health: "Patient understanding and satisfaction regarding the clinical use of whole genome sequencing: Findings from the MedSeq Project"


Background: The expanded use of Whole Genome Sequencing (WGS) has generated excitement due its potential to tailor medical treatment. However, clinical use of WGS poses challenges for informed consent and disclosure of results. Few empirical studies have examined patients’ understanding of and satisfaction with the clinical communication of WGS results.
Methods: The MedSeq Project is a randomized clinical trial examining the impacts of WGS in primary care and cardiology. We analyzed survey data from patients’ initial enrollment and at multiple time points following physician disclosure of results. Domains of interest included understanding of informed consent, subjective understanding, satisfaction with communication of results, and decisional regret.
Results: Survey responses were provided by 202 participants (mean age = 55 years; 51% male; 80% college graduates). At enrollment, participants understood the majority of key facts about the study (mean = 19.6 / 22 items answered correctly), although some incorrectly answered items addressing results to be returned (e.g., 18% believed they would receive their entire DNA sequence. Higher informed consent knowledge scores were associated with female gender and higher genomic knowledge, subjective numeracy, and education levels (all p < .05). After results disclosure, participants had low scores of decisional regret regarding study participation; they also reported high levels of satisfaction with their physicians’ disclosure of results (mean = 5.9 on a 6-point scale), although ~20% of participants reported receiving “too much” information. Satisfaction with communication did not vary by participants’ demographics or other characteristics (e.g. genomic knowledge).
Conclusions: This study suggests that the intervention was well understood by patients, with low levels of decisional regret and high satisfaction with communication. Future research will need to examine these issues in more diverse samples, where misconceptions about the clinical WGS and concerns about information overload may be magnified.

Kayte Spector-Bagdady, JD, MBioethics, CBSSM Postdoctoral Research Fellow: "Direct‐to‐Consumer Biobanking"


23andMe is back on the market as the first direct‐to‐consumer genetic testing company that “includes reports that meet Food and Drug Administration standards for being clinically and scientifically valid.” Its current product includes 36 health‐related carrier‐status reports and consumers’ raw genetic data. But while its front‐end product is selling individual genetic tests online, its back‐end business model is amassing one of the largest privately owned genetic databases in the world.
This article argues that as the Department of Health and Human Services revises its regulation of research with human subjects as well as its proposal to exempt autosomal recessive carrier screens from premarket authorization it should contemplate the intersection of these areas of rulemaking—and consider how enhancing the security of federally funded research but loosening private access to biospecimens will drive more research into the private sector and result in less, not more, protection for human subjects.

Panel Presentation (Susan Goold, MD, MHSA, MA & colleagues): "Community engagement in setting research priorities: Representation, Participation and Evaluation"


We describe a 5-year project that engaged minority and underserved communities throughout the state of Michigan in deliberations about health research priorities to increase community voice in how limited health research resources are allocated. DECIDERS (Deliberative Engagement of Communities in DEcisions about Research Spending) formed a state-wide Steering Committee (SC) to develop a version of the deliberative exercise CHAT for health research priorities, then convened 47 groups to evaluate the tool and describe community research priorities.
Facilitators: Susan Goold and Zachary Rowe, Co-Directors
Panelists: Karen Calhoun, Charo Ledon, Esther Onaga, Lisa Szymecko

Are you a numbers person? (Oct-07)

Many types of medical decisions involve making sense of numbers such as test results, risk statistics, or prognosis estimates. But people vary in their ability and confidence with numbers. How would you rate your own "numeracy"?

 

Not good at all

 

 

 

 

 

Extremely good

How good are you at working with fractions?

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How good are you at working with percentages?

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How good are you at calculating a 15% tip?

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How good are you at figuring out how much a shirt will cost if it is 25% off?

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Not at all helpful

 

 

 

 

Extremely helpful

When reading the newspaper, how helpful do you find tables and graphs that are parts of a story?

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Always prefer words

 

 

 

 

Always prefer numbers

When people tell you the chance of something happening, do you prefer that they use words ("it rarely happens") or numbers ("there's a 1% chance")?

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Always prefer percentages

 

 

 

 

Always prefer words

When you hear a weather forecast, do you prefer predictions using percentages (e.g., "there will be a 20% chance of rain today") or predictions using only words (e.g., "there is a small chance of rain today")

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Never

 

 

 

 

Very often

How often do you find numerical information to be useful?

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Why is it important for researchers to know how numerate you are?

When a doctor or health educator is trying to communicate complex statistical information to a patient, it's helpful to know how well the patient understands numbers. This is called numeracy-the ability to process basic probability and numerical concepts. People low in numeracy might want or need different types of explanations than people high in numeracy.

How is numeracy measured?

In the past, researchers have used surveys similar to math tests to evaluate the levels of numeracy of participants in research studies. These objective numeracy tests can be time-consuming to administer and are often seen by the participants as stressful and annoying. As an alternative, a CBDSM research team-including Angela Fagerlin, Brian Zikmund-Fisher, Dylan Smith, Aleksandra Jankovic, and Peter Ubel-recently designed and tested an eight-item self-assessment tool, called the Subjective Numeracy Scale (SNS), to measure numeracy. As you saw when you completed the tool, four of the questions on the SNS measure people's beliefs about their skill in performing various mathematical operations, and four measure people's preferences about the presentation of numerical information. When the CBDSM team tested the SNS, they found that it was moderately correlated with objective numeracy tests. In a variety of risk communication and preference elicitation tasks, the SNS also predicted people's behavior almost as well as an objective numeracy test did. The advantage of the SNS is that it is quick to administer and is less stressful to participants than objective tests. In addition, only the SNS is recommended for phone or Internet administration. The researchers also found that study participants who completed the SNS were much more likely to answer all the numeracy questions and were much more likely to say that they would be willing to participate in an additional research study.

Are their broader implications?

Research has shown that many Americans, including highly educated individuals, have low levels of numeracy. Low numeracy has significant implications for people's health care, especially when it comes to understanding the risks and benefits of treatments. Although we may not easily change people's numeric ability, it may be possible to create health education materials that help patients with low numeracy skills. Several CBDSM researchers are have been pursuing this subject.

Read the articles:

Measuring numeracy without a math test: development of the subjective numeracy scale (SNS).
Fagerlin A, Zikmund-Fisher BJ, Ubel PA, Jankovic A, Derry HA, Smith DM. Medical Decision Making 2007;27(5):672-680.

Validation of the subjective numeracy scale (SNS): Effects of low numeracy on comprehension of risk communications and utility elicitations.
Zikmund-Fisher BJ, Smith DM, Ubel PA, Fagerlin A. Medical Decision Making 2007;27(5):663-671.

Making numbers matter: Present and future research in risk communication.
Fagerlin A, Ubel PA, Smith DM, Zikmund-Fisher BJ. American Journal of Health Behavior 2007;31(Suppl. 1):S47-S56.

 

 

Get it out of me! (Dec-05)

A 5% chance of death or a 10% chance of death:  which would you choose?

Imagine that you have been diagnosed with a slow growing cancer. Right now, the cancer is not causing you to feel sick. For most people, the cancer will grow so slowly it will never cause them any trouble. For others, the cancer will grow to the point that it makes them sick. Untreated, five percent (5 out of 100) will die of the cancer. Your doctor tells you that you have two treatment options: watchful waiting or surgery. Watchful waiting means you will not do any treatment right away, but your doctor will follow your cancer closely and treat any symptoms that you have if it begins to spread. Although it would be too late to be cured, you would be comfortable and free of pain. There are no side effects to watchful waiting, but five percent (5 out of 100) of the people who choose this treatment will develop symptoms and die from their cancer within five years. On the other hand, the surgery would cure your cancer permanently. Following surgery you will feel more tired than usual and will experience stomach upset occasionally for the three months following your surgery. However, surgery has a ten percent (10 out of 100) risk of death during the surgery.

Imagine that both of these treatments are completely covered by your health insurance. Which would you choose?

  •  I would not take the surgery and accept the 5% chance of dying from this cancer.
  •  I would take the surgery and accept the 10% chance of dying from the surgery.

How do your answers compare?

In the real world, cancer patients sometimes choose treatments that may have devastating side effects over less invasive, yet equally or more effective, approaches. One explanation for this is that people may feel a strong need to "get the cancer out" of their bodies. Surgical removal of all potentially cancerous tissues may satisfy this desire so thoroughly that people end up ignoring important statistical information about adverse outcomes.

Making a choice not in their best interest

CBDSM investigators Angela Fagerlin, Brian Zikmund-Fisher, and Peter Ubel hypothesized that people perceive cancer diagnoses as a call to action, and more specifically, a call to get rid of the cancer through surgery, regardless of what statistical information might say to the contrary. Consequently, they predicted that when presented with hypothetical cancer diagnoses, many people would say they would pursue surgery even if such an action would decrease their chance of survival.

To explore the relative frequency of people's willingness to choose surgery when it wasn't in their best interest, the investigators designed a cancer scenario similar to the one you read on the previous page. Participants were presented either a surgery or a medication treatment that would either increase or decrease their chance of survival.

The investigators found that participants who were presented with the opportunity to rid themselves of their cancer through surgery were significantly more inclined to take action than those who were presented with the medication treatment. For example, when the treatment reduced their overall chance of survival, 65% chose the surgery, whereas only 38% chose the medication treatment. This suggests that people's treatment decisions may be based not on the effectiveness of the treatments, but rather on their beliefs about how cancer should be treated. Specifically, cancer diagnoses seem to conjure up a strong desire for active treatment. And people seem to have an intuitive belief that action should not just involve treatment, but surgical removal of the cancer.

Why these findings are important

The results of this study may resonate with many clinicians who have encountered cancer patients who seem to desire treatment for treatment's sake, or who have a preference for surgical intervention even before they learn about the pros and cons of their treatment alternatives. This study should serve to remind clinicians that patients' preference for action can be strong enough, at times, to be a bias. At a minimum, it is important for health care professionals to be aware of the potential for such biases, so they can decide whether to accept patients' preferences at face value, or try to convince patients that aggressively treating a tumor may not be in their best interests.

Read the article:

Cure me even if it kills me: Preferences for invasive cancer treatment.
Fagerlin A, Zikmund-Fisher BJ, Ubel PA. Medical Decision Making 2005;25(6):614-619.

Drilling for Answers (Sep-08)

Find out about some experimental treatments for Parkinson's Disease. And then decide how you'd respond if you had a chance to participate in this research. In this interactive decision, we’re going to ask you about some experimental treatments for Parkinson’s Disease.

What is Parkinson’s Disease?

Up to 1 million Americans are currently diagnosed with Parkinson’s Disease, a brain disease that gradually worsens over many years and causes tremors, stiffness, slowness of movement, and balance problems. Some people with Parkinson’s Disease also experience changes in memory, concentration, and mood.

The average age at onset of symptoms is 65, but 5% to 10% have onset before the age of 45. The symptoms are caused by the death of cells in the brain that make a chemical called dopamine. Medications that are available to treat Parkinson’s Disease provide more dopamine to the brain or mimic the action of dopamine in the brain. In early stages of Parkinson’s Disease, symptoms generally respond well to medications. Over time, the medications become less effective and may cause more side effects.

What treatments are researchers developing?

One experimental procedure to treat moderate to advanced Parkinson’s Disease is gene transfer, which involves neurosurgery to insert a gene into the brain, to lower the side effects of medications and to increase the effectiveness of medications. Note that no stem cells or fetal cells are used. The patient is sedated but remains awake. The scalp is numbed by injections of local anesthetics (like Novocaine), so the patient should not feel discomfort. The surgeon drills two small holes into the skull and injects a liquid containing the gene on each side of the brain into areas known to be affected in Parkinson’s Disease.

How would gene transfer surgery be tested?

To see if the gene transfer surgery is truly effective, investigators need to compare a group that receives the gene transfer surgery with a group that does not. People would be randomly assigned (e.g., by flipping a coin) to one of the two groups. This kind of study could be done in two ways.

  • An open study could be done, where everyone knows who has and who has not received the gene transfer. One half of the patients would receive their usual medications only. The other half would receive their usual medications plus the gene transfer surgery.

  • A blinded study could be done, where neither the patient nor the evaluating researcher knows who has and who has not received the gene transfer. One half of the patients would receive their usual medications plus gene transfer surgery. The other half of the patients would receive their usual medications plus “sham surgery.” Patients receiving sham surgery have the two small holes drilled into the skull. But the protective coverings in the brain are not disturbed, and there is no insertion of any material into the brain.

    In a blinded study, only the surgeon would know who has received the gene transfer surgery and who has received sham surgery. If the gene transfer surgery is found to be both safe and effective, those in the sham surgery group would have the option of receiving the gene transfer at a later date without cost, using the holes drilled during the sham surgery.

What are the risks of these studies?

For surgery patients in both an open study and a blinded study, the surgery poses potential risks. There is a 1% to 4% risk of bleeding into the brain (usually minor, but there is a less than 1% chance that it could result in death or substantial disability). There is also a 1% to 5% risk of infection developing in the skin or brain, which would be treated with antibiotics. Overall, the risk of bleeding and infection is smaller for sham surgery than for actual gene transfer surgery.

Those subjects receiving the gene transfer surgery would face additional risks, including the possibility of brain tumors, inflammation of the brain, and a worsening of the Parkinson’s Disease. Patients in pilot studies have been followed for only one year, so longer-term effects are not known.

What are the pros and cons of the two kinds of studies?

When deciding whether or not to adopt a new procedure, it’s important to get accurate, unbiased evidence. If we adopt a new procedure that is unsafe or ineffective, people will end up receiving unnecessary surgeries. If we fail to adopt an effective procedure, we miss the opportunity to offer people a treatment that could benefit them.

Most, but not all, researchers in the field believe that the blinded study, using sham surgery, would provide better quality data than the open study. These researchers worry that if people know which procedure they receive, the results of the study may be difficult to interpret because expectations of both the patient and the evaluating researcher can unintentionally bias the results.

However, some people, including some researchers, worry that a study using sham surgery may not be worth the risks and burdens. The patients with Parkinson’s Disease who get the sham surgery undergo a neurosurgical procedure that provides no benefit to them, while being exposed to the risks and burdens of the procedure. There is also the worry that people with moderate to advanced Parkinson’s Disease are vulnerable to exploitation because having a serious, incurable illness may put them in a desperate situation.

Now, you decide!

Imagine that you have moderate to advanced Parkinson’s Disease. You can do most things independently, but involuntary movements interfere with your routine activities. Daily chores take twice as long compared to people without Parkinson’s Disease. For some parts of the day, your movement is extremely slow and you need help with daily activities.

You are asked to participate in either an open study or a blinded (sham surgery) study. Which study would you choose to participate in?
  • Blinded study (sham surgery)
  • Open study
  • Would not participate

Researchers have found that only about 35% of the general population would choose, as you did, to participate in the blinded study. As reported in a 2008 article in the journal Movement Disorders, about 55% of the general population would choose the open study, and the remaining 10% said they would not participate.

When these same questions were posed to people who actually have Parkinson’s Disease, the response was quite different: 24.5% picked the blinded study, 41.5% picked the open study, and 34% said they would not participate. The researchers observe that patients with chronic illness adapt to their disabilities; the people with Parkinson’s Disease might have felt that they had less to gain or more to lose from the benefits and risks associated with a trial involving surgery. Alternatively, people without Parkinson’s Disease may have over-estimated the impact that disability might have on them or underestimated their ability to function.

In this study, people were also asked to imagine that they were members of an ethics review committee deciding whether to allow certain studies. About 81% of respondents said that they would definitely or probably allow the open study for gene transfer. 55% said that they would definitely or probably allow the blinded (sham surgery) study. These results were the same for both the general population and people with Parkinson’s Disease. In other words, a very large majority of both Parkinson’s patients and non-Parkinson’s patients endorsed the open study as ethically acceptable. A majority endorsed sham surgery as an ethically acceptable control condition.

In analyzing these results and reading the written remarks added by the respondents, the researchers comment, “Education seems to play a strong role in people’s willingness to take a more societal perspective and balance the burdens to participants with the overall scientific and societal benefit. . . Those opposed to sham surgery appeared to have an intrinsic objection to blinding, and to focus on the invasive nature of the sham surgery per se . . .Given the complexity of the topic, it may be that laypersons, especially those with less education, may need more opportunity to learn and deliberate on the issues.”

Interestingly, scientists researching Parkinson’s Disease were presented with these same questions in a related study (Kim SY, Frank S, Holloway R, Zimmerman C, Wilson R, Kieburtz K. Science and ethics of sham surgery: A survey of Parkinson disease clinical researchers. Arch Neurol 2005;62:1357-1360.) Only 50% of these clinical researchers would allow open studies, and 94% would support controlled studies using sham surgery.

In conclusion, “Future research needs to determine whether eliciting more considered judgments of laypersons would reveal different levels of support for sham surgery.”

For a complete discussion of this research, see Frank S, Wilson R, Holloway R, Zimmerman C, Peterson A, Kieburtz K, Kim SY. Ethics of sham surgery: Perspective of patients. Movement Disorders 2008;23(1):63-68. The senior author, Scott Y. Kim, MD, PhD, is a faculty member at the Center for Behavioral and Decision Sciences at the University of Michigan.

Read the article:

Ethics of sham surgery: Perspective of patients.
Frank S, Wilson R, Holloway RG, Zimmerman C, Peterson DR, Kieburtz K, Kim SY. Movement Disorders 2008;23:63-8.

CBSSM investigators Holly Witteman, Andrea Fuhrel-Forbis, Angela Fagerlin, and Brian Zikmund-Fisher, along with CBSSM alumni Peter Ubel and Andrea Angott will give a plenary talk at the Society for Medical Decision Making's 32nd Annual Meeting in Toronto on Monday, October 25.  The talk is titled, "Colostomy is Better than Death, but a 4% Chance of Death Might Be Better Than a 4% Chance of Colostomy: Why People Make Choices Seemingly At Odds With Their Stated Preferences." 

Abstract:

Purpose: When asked for their preference between death and colostomy, most people say that they prefer colostomy. However, when given the choice of two hypothetical treatments that differ only in that one has four percent chance of colostomy while the other has four percent additional chance of death, approximately 25% of people who say that they prefer colostomy actually opt for the additional chance of death. This study examined whether probability-sensitive preference weighting may help to explain why people make these types of treatment choices that are inconsistent with their stated preferences.

Method: 1656 participants in a demographically diverse online survey were randomly assigned to indicate their preference by answering either, “If you had to choose, would you rather die, or would you rather have a colostomy?†or, “If you had to choose, would you rather have a 4% chance of dying, or would you rather have a 4% chance of having a colostomy?†They were then asked to imagine that they had been diagnosed with colon cancer and were faced with a choice between two treatments, one with an uncomplicated cure rate of 80% and a 20% death rate, and another with an uncomplicated cure rate of 80%, a 16% death rate, and a 4% rate of colostomy.

Result: Consistent with our prior research, most people whose preferences were elicited with the first question stated that they preferred colostomy (80% of participants) to death (20%), but many then made a choice inconsistent with that preference (59% chose the treatment with higher chance of colostomy; 41% chose the treatment with higher chance of death). Compared to the first group, participants whose preferences were elicited with the 4% question preferred death (31%) over colostomy (69%) more often (Chi-squared = 24.31, p<.001) and their treatment choices were more concordant with their stated preferences (64% chose the treatment with higher chance of colostomy; 36% chose the treatment with higher chance of death, Chi-squared for concordance = 36.92, p<.001).

Conclusion: Our experiment suggests that probability-sensitive preference weighting may help explain why people’s medical treatment choices are sometimes at odds with their stated preferences. These findings also suggest that preference elicitation methods may not necessarily assume independence of probability levels and preference weights.


Is Bill Gates' time worth more than yours? (Jul-03)

Informal caregiving for relatives (parents, grandparents, spouses) can be time consuming. Can we attach dollar value to that time? Is everyone's time worth the same amount?

Imagine that your mother is suffering from moderate dementia and needs assistance with daily activities such as bathing and dressing. You are the only person available to care for her, as you are an only child and your father has passed away. On average, your mother will need about 2 to 3 hours of help per day, or 17 hours per week total.

Assuming that you provide 17 hours of care per week, that means you will provide about 900 hours of care each year. How much money would you say the time you devote to caregiving is worth each year?
 
Now imagine that Bill Gates, the world's richest person, is in the same situation as you. He has to provide 17 hours of care per week to his mother. How do you think the value of the time he spends giving care compares to the value of the time you spend giving care?
 
  • His is worth more
  • His is worth the same amount
  • His is worth less

How do your answers compare?

According to a study done to determine the costs of informal caregiving, the average value of the time spent giving care to someone with moderate dementia was about $7400. This was calculated using an average time of about 900 hours per year, at the mean wage for a home health aide in 1998 of $8.20 per hour.

What if the person you're caring for has less or more severe dementia?

As you might imagine, the cost of informal care differs depending on the severity of dementia. People with mild dementia don't need as much care (8.5 hours per week), and those with severe dementia need much more (41.5 hours per week). The amount of care needed directly impacts the estimated cost of care:

Dementia severity Hours of care per week Estimated cost of informal care
Mild 8.5 $3630
Moderate 17.4 $7420
Severe 41.5 $17,700
Why is this important?

As the Baby Boomer generation ages, the number of people needing informal care is going to increase dramatically. In order to make informed policy decisions regarding care for older people, the government will need an estimate of the value of informal care. A major obstacle to this is that there is no set way for making the estimates.

Earlier, you said that Bill Gate's caregiving time would be worth the same amount as yours. That implies that basing national estimates of caregiving costs on average wages would be the proper way to go about the calculations, since it means everyone's time is equally valuable.

However, some people think that not everyone's time is of equal value. In that case, using average wages to estimate the total cost of caregiving may not lead to an accurate representation. If one group of people is more likely to provide care than another group, then the average value of all caregivers' time may not be the same as the average of all peoples' time. This would possibly lead to an over- or underestimation of caregiving costs, depending on the value of the time of common groups of caregivers. Even without an agreed-upon estimation method, some valuable data can be generated.

The estimation method used in this study likely led to conservative figures, so the true costs of informal caregiving are probably higher than reported here. Even using this conservative method, the costs to society are staggering. The researchers estimated that the cost of informal caregiving for dementia alone in 1998 was $18.6 billion, which is almost two-thirds as much money as that actually spent on paid home care services for all conditions, not just dementia! That figure will grow considerably in the not-so-distant future when the Baby Boomers begin to need caregiving, whether formal or informal, and will likely have a large impact not just on health care systems, but on society as a whole as more and more people are called on to provide informal care.

For more information see:

Langa KM, et al. National estimates of the quantity and cost of informal caregiving for the elderly with dementia. Journal of General Internal Medicine. 16:770-778, 2001.

How would you adapt? (Nov-05)

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.

The vast majority of oncologists (84%) say that they consider costs to the patient when recommending cancer treatments. But fewer than half of oncologists frequently discuss cost issues with their patients. These are some of the results of a national survey conducted by Peter Neuman, ScD (Tufts Medical Center) and CBSSM's former Director Peter A. Ubel, MD, funded by the California HealthCare Foundation. Results were published in the January 2010 Health Affairs. Ubel comments: "Oncologists understand, from up close, that cancer diagnoses and treatment leave many people bankrupt. They want to do what is medically right for their patients, but they are struggling to figure out what, at the same time, is economically right for them." Read the article here.

Pictographs/Icon Arrays

Pictographs and icon arrays are two names for a type of risk communication graphic that CBSSM investigators have developed and extensively tested. Because pictographs are made up of a matrix of unique elements representing individual units (people) within the at-risk population, they accurately communicate exact percentages while simultaneously conveying “gist” impressions derived from the relative proportion of colored vs. uncolored area in the graph. Click here to learn more and create your own downloadable pictograph images.

 

Pictographs combine some of the best elements of alternate communication formats such as tables or bar charts. A pictograph is made up of unique icons representing individual units (people) within the at-risk population. As a result, it accurately communicates exact percentages the way a table does. However, pictographs also convey “gist” impressions derived from the relative proportion of colored vs. uncolored area in the graph. As such, they are similar in effectiveness to bar graphs and other area or height-based graphics. Furthermore, pictographs are like pie charts in that they represent the entire risk denominator visually, unlike bar charts which focus attention primarily on the risk numerator.

CBSSM researchers have shown that using pictographs in risk communication contexts can be used to effectively communicate the incremental benefit of risk reducing treatments (Zikmund-Fisher, 2008) and the risk of developing side effects from medications, especially when multiple colors are used to distinguish the incremental risk caused by treatment (Zikmund-Fisher, 2008). Pictographs can also limit the biases induced by the presence of powerful anecdotal narratives of former patients (Fagerlin, 2005) and incremental risk formats (Zikmund-Fisher, 2008). In a study that directly compared graphical formats, pictographs were also the only graphical format that supported acquisition of both verbatim and all-important “gist” knowledge (Hawley, 2008). Another study (2010) showed that simpler pictographs (ones that showed a single risk) appeared to be more effective than more visually complex pictographs that used multiple colors to show different risks simultaneously. In a similar vein, two studies (2011, 2012) have found advantages of using static pictographs instead of more complex animated or interactive versions (perhaps because these elements distract attention from the part-whole relationship that represents the risk being communicated).

CBSSM researchers are not alone in our use of pictographs. Other researchers have shown that image matricies of this type are easier to interpret quickly and accurately than other formats (Feldman-Stewart, 2007), are sometimes preferred by patients (Schapira, 2006), and may reduce side effect aversion in treatment decision-making (Waters, 2007). More recent work has shown that icon arrays overcome some of the barriers to comprehension caused by low numeracy (e.g., Galesic & Garcia-Retamero, 2009 & 2010; Garcia-Retamero & Galesic, 2009). In fact, it appears that high numeracy and low numeracy people use pictographs in different ways (Hess, et al, 2011).

To encourage broader use of pictographs in risk communication and medical decision-making in general, CBSSM has collaborated with the UM Risk Center to develop Iconarray.com, a web-based application that enables people to develop and download their own tailored icon array graphics. A companion site, clinician.iconarray.com, enables clinicians (or anyone else) to make side-by-side icon array displays for use in consultations in less than 1 minute.

 

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