Mispredictions and misrecollections: challenges for subjective outcome measurement.

Purpose: To review research from the behavioral sciences that demonstrates how predictions of future events--and memories of past events--are often systematically biased.

Method: Description of how these biases present challenges for subjective outcome measurement in rehabilitation settings, and for measuring health utility.

Results: Two new techniques for outcome measurement that have been specifically designed to resist these biases Ecological Momentary Assessment and the Day Reconstruction Method are successful.

"If I'm better than average, then I'm ok?": Comparative information influences beliefs about risk and benefits.

Objective: To test whether providing comparative risk information changes risk perceptions.

Methods: Two hundred and forty-nine female visitors to a hospital cafeteria were randomized to one of two conditions which differed in whether their hypothetical breast cancer risks was lower or higher than the average women's. Participants read a scenario describing a breast cancer prevention pill and indicated their: (1) likelihood of taking the pill and (2) perception of whether the pill provides breast cancer risk reduction.

Sensitivity to disgust, stigma, and adjustment to life with a colostomy.

We examined whether trait disgust sensitivity predicts well-being in colostomy patients, and whether disgust predicts stigmatizing attitudes about colostomy in non-patients. 195 patients with a colostomy returned a mailed survey including measures of disgust sensitivity, life satisfaction, mood, and feelings of being stigmatized. We also conducted an internet-survey of a non-patient sample (n = 523).

Does labeling prenatal screening test results as negative or positive affect a woman's responses?

Objective: We tested whether adding interpretive labels (eg, "negative test") to prenatal genetic screening test results changes perceived risk and preferences for amniocentesis.

Study Design: Women (N = 1688) completed a hypothetical pregnancy scenario on the Internet. We randomly assigned participants into 2 groups: high risk of fetal chromosomal problems (12.

Rethinking the objectives of decision aids: a call for conceptual clarity.

Health decision aids are a potentially valuable adjunct to patient-physician communication and decision making. Although the overarching goal of decision aids--to help patients make informed, preference-sensitive choices--is widely accepted, experts do not agree on the means to achieve this end. In this article, the authors critically examine the theoretical basis and appropriateness of 2 widely accepted criteria used to evaluate decision aids: values clarification and reduction of decisional conflict.

Validation of the Subjective Numeracy Scale: effects of low numeracy on comprehension of risk communications and utility elicitations.

Background: In a companion article, the authors describe the Subjective Numeracy Scale (SNS), a self-assessment of numerical aptitude and preferences for numbers that correlates strongly with objective numeracy.

Objective: The objective of this article is to validate the Subjective Numeracy Scale using measures of subjects' capacity to recall and comprehend complex risk statistics and to complete utility elicitations.

Research Design: The study is composed of 3 general public surveys: 2 administered via the Web and 1 by paper and pencil.

Measuring numeracy without a math test: development of the Subjective Numeracy Scale.

Background: Basic numeracy skills are necessary before patients can understand the risks of medical treatments. Previous research has used objective measures, similar to mathematics tests, to evaluate numeracy.

Objectives: To design a subjective measure (i.

Why people refuse to make tradeoffs in person tradeoff elicitations: a matter of perspective?

Objective: Person tradeoff (PTO) elicitations assess people's values for health states by asking them to compare the value of treatment programs. For example, people might be asked how many patients need to be cured of health condition X to equal the benefit of curing 100 people of condition Y. However, when faced with PTO elicitations, people frequently refuse to make quantifiable tradeoffs, exhibiting 2 kinds of refusals: 1) They say that 2 treatment programs have equal value, that curing 100 of X is just as good as curing 100 of Y, even if X is a less serious condition than Y, or 2) they say that the 2 programs are incomparable, that millions of people need to be cured of X to be as good as curing 100 of Y.

Assessing the economic challenges posed by orphan drugs.

Historically, patients with rare diseases have been underserved by commercial drug development. In several jurisdictions, specific legislation has been enacted to encourage the development of drugs for rare diseases (orphan drugs), which would otherwise not be commercially viable. However, because of the small market, these drugs are often very expensive.

Mortality versus survival graphs: improving temporal consistency in perceptions of treatment effectiveness.

Objective: Previous research has demonstrated that people perceive treatments as less effective when survival graphs show fewer years of data versus more data. We tested whether using mortality graphs would reduce this temporal inconsistency bias.

Methods: A demographically diverse sample of 1461 Internet users read about a hypothetical disease and then were randomized to view either survival or mortality graphs that showed either 5 years of data or 15 years of treatment outcomes data.

Who decides? Living donor liver transplantation for advanced hepatocellular carcinoma.

Few effective treatment options are available for patients with advanced hepatocellular carcinoma (HCC). Some transplant centers have begun offering living donor liver transplantation (LDLT) for selected patients whose HCC exceeds Milan criteria by a small margin. However, this remains a controversial subject.

Misremembering colostomies? Former patients give lower utility ratings than do current patients.

Community members often evaluate health conditions more negatively than do the patients who have them. The authors investigated whether experience with a health condition reduces this discrepancy by surveying colostomy patients by mail (n = 195), some of whom (n = 100) had their colostomies reversed and normal bowel function restored. The authors also surveyed a community sample recruited via the Internet (n = 567).

A matter of perspective: choosing for others differs from choosing for yourself in making treatment decisions.

Background: Many people display omission bias in medical decision making, accepting the risk of passive nonintervention rather than actively choosing interventions (such as vaccinations) that result in lower levels of risk.

Objective: Testing whether people's preferences for active interventions would increase when deciding for others versus for themselves.

Research Design: Survey participants imagined themselves in 1 of 4 roles: patient, physician treating a single patient, medical director creating treatment guidelines, or parent deciding for a child.

Why are you calling me? How study introductions change response patterns.

Purpose: Research on survey methodology has demonstrated that seemingly innocuous aspects of a survey's design, such as the order of questions, can produce biased results. The current investigation extends this work by testing whether standard survey introductions alter the observed associations between variables.

Methods: In two experimental studies, we invited Parkinson's disease (PD) patients to participate in a telephone survey of (a) Parkinson's patients, conducted by a regional medical center, or (b) the general population, conducted by a regional university.

Individualized survival curves improve satisfaction with cancer risk management decisions in women with BRCA1/2 mutations.

Purpose: Women with BRCA1/2 mutations are faced with complex decisions about breast and ovarian cancer risk management. This study was conducted to determine the effect of a tailored decision support system (DSS) that provides individualized survival and cancer incidence curves specific to expected outcomes of alternative management strategies.

Patients And Methods: This was a double-blind, randomized controlled trial of 32 women with BRCA1/2 mutations.

Cure me even if it kills me: preferences for invasive cancer treatment.

Purpose: When making medical decisions, people often care not only about what happens but also about whether the outcome was a result of actions voluntarily taken or a result of inaction. This study assessed the proportion of people choosing nonoptimal treatments (treatments which reduced survival chances) when presented with hypothetical cancer scenarios which varied by outcome cause.

Methods: A randomized survey experiment tested preferences for curing an existent cancer with 2 possible treatments (medication or surgery) and 2 effects of treatment (beneficial or harmful).

Trading people versus trading time: what is the difference?

Background: Person trade-off (PTO) elicitations yield different values than standard utility measures, such as time trade-off (TTO) elicitations. Some people believe this difference arises because the PTO captures the importance of distributive principles other than maximizing treatment benefits. We conducted a qualitative study to determine whether people mention considerations related to distributive principles other than QALY-maximization more often in PTO elicitations than in TTO elicitations and whether this could account for the empirical differences.

Lying to insurance companies: the desire to deceive among physicians and the public.

This study examines the public's and physicians' willingness to support deception of insurance companies in order to obtain necessary healthcare services and how this support varies based on perceptions of physicians' time pressures. Based on surveys of 700 prospective jurors and 1617 physicians, the public was more than twice as likely as physicians to sanction deception (26%versus 11%) and half as likely to believe that physicians have adequate time to appeal coverage decisions (22%versus 59%). The odds of public support for deception compared to that of physicians rose from 2.

What is perfect health to an 85-year-old?: evidence for scale recalibration in subjective health ratings.

Background: If an 85-year-old man rates his health as 90 on a scale in which 100 represents "perfect health," would his rating mean the same thing as a 90 rating from a 25-year-old? We conducted a randomized trial of 3 different ways of eliciting subjective health ratings from participants in the Health and Retirement Study to test whether the meaning of perfect health changes as people age, causing people to recalibrate their self-reported health ratings to account for their age.

Methods: The Health and Retirement Study (HRS) is a nationally representative, prospective study of 22,000 persons born in 1947 or earlier. The data analyzed in this study come from the self-assessed health utilities module administered in 2002 to 1031 randomly selected HRS respondents.

Health, wealth, and happiness: financial resources buffer subjective well-being after the onset of a disability.

We examined the hypothesis that the relationship between financial status and subjective well-being, typically found to be very small in cross-sectional studies, is moderated by health status. Specifically, we predicted that wealth would buffer well-being after the onset of a disability. Using data from the Health and Retirement Study, a longitudinal study of people at and approaching retirement age, we employed within-subjects analyses to test whether wealth measured prior to the onset of a disability protected participants' well-being from some of the negative effects of a new disability.

Reducing the influence of anecdotal reasoning on people's health care decisions: is a picture worth a thousand statistics?

Background: People's treatment decisions are often influenced by anecdotal rather than statistical information. This can lead to patients making decisions based on others' experiences rather than on evidence-based medicine.

Objective: .