CiteULike: Tag medical-decision-making

Do patients trust computers?

Marianne Promberger — 2007-06-11T12:19:11-00:00

Journal of Behavioral Decision Making, Vol. 19, No. 5. (2006), pp. 455-468.

In two studies, we inquired whether patients accept medical recommendations that come from a computer program rather than from a physician. In study 1, we found that subjects, when deciding whether to have an operation or not in different medical scenarios, were more likely to follow a recommendation that came from a physician than one that came from a computer program. Subjects stated that they would feel less responsible when following a recommendation than when deciding against it. Following a physician's recommendation reduced the feeling of responsibility more than following that of a computer program. The difference in feeling of responsibility when following versus when not following a recommendation partly mediated subjects' inclination to follow the physician more. In our second study, we found that subjects were more decision seeking when they received a recommendation or decision from a computer program, and they were more decision seeking when they had to accept a decision than when they received a recommendation. Subjects also trusted the physician more than the computer program to make a good recommendation or decision. Copyright © 2006 John Wiley & Sons, Ltd.

The Beguiling Pursuit of More Information

Donald Redelmeier — 2007-12-21T09:15:21-00:00

Med Decis Making, Vol. 21, No. 5. (1 September 2001), pp. 374-379.

The authors tested whether clinicians make different decisions if they pursue information than if they receive the same information from the start. Three groups of clinicians participated (N = 1206): dialysis nurses (n = 171), practicing urologists (n = 461), and academic physicians (n = 574). Surveys were sent to each group containing medical scenarios formulated in 1 of 2 versions. The simple version of each scenario presented a choice between 2 options. The search version presented the same choice but only after some information had been missing and subsequently obtained. The 2 versions otherwise contained identical data and were randomly assigned. In 1 scenario involving a personal choice about kidney donation, more dialysis nurses were willing to donate when they first decided to be tested for compatibility and were found suitable than when they knew they were suitable from the start (65% vs. 44%, P = 0.007). Similar discrepancies were found in decisions made by practicing urologists concerning surgery for a patient with prostate cancer and in decisions of academic physicians considering emergency management for a patient with acute chest pain. The pursuit of information can increase its salience and cause clinicians to assign more importance to the information than if the same information was immediately available. An awareness of this cognitive bias may lead to improved decision making in difficult medical situations. 10.1177/02729890122062677

Genetic testing for susceptibility to adult-onset cancer. The process and content of informed consent.

G Geller — 2006-10-11T13:38:51-00:00

JAMA, Vol. 277, No. 18. (14 May 1997), pp. 1467-1474.

OBJECTIVE: To provide guidance on informed consent to clinicians offering cancer susceptibility testing. PARTICIPANTS: The Task Force on Informed Consent is part of the Cancer Genetics Studies Consortium (CGSC), whose members were recipients of National Institutes of Health grants to assess the implications of cancer susceptibility testing. The 10 task force members represent a range of relevant backgrounds, including various medical specialties, social science, genetic counseling, and consumer advocacy. EVIDENCE: The CGSC held 3 public meetings from 1994 to 1996. At its first meeting, the task force jointly established a list of topics. The cochairs (G.G. and J.R.B) then developed an outline and assigned each topic to an appropriate writer and reviewer. Writers summarized the literature on their topics and drafted recommendations, which were then revised by the reviewers. The cochairs compiled and edited the entire manuscript. All members were involved in writing this report. CONSENSUS PROCESS: The first draft was distributed to task force members, after which a meeting was held to discuss its content and organization. Consensus was reached by voting. A subsequent draft was presented to the entire CGSC at its third meeting, and comments were incorporated. CONCLUSIONS: The task force recommends that informed consent for cancer susceptibility testing be an ongoing process of education and counseling in which (1) providers elicit participant, family, and community values and disclose their own, (2) decision making is shared, (3) the style of information disclosure is individualized, and (4) specific content areas are discussed.

Offering cystic fibrosis carrier screening to an HMO population: factors associated with utilization.

ES Tambor — 2006-10-17T19:25:22-00:00

Am J Hum Genet, Vol. 55, No. 4. (October 1994), pp. 626-637.

We offered cystic fibrosis (CF) carrier testing to reproductive-age enrollees in an HMO, in order to determine factors associated with test utilization in a primarily nonpregnant population. Male and female enrollees either were mailed an invitation to have the test after attending an educational session (N = 2,713) or were approached in waiting rooms at the HMO sites and given the opportunity to have the test without making an additional visit (N = 608). Uptake was considerably higher when testing could be obtained without making an additional visit (23.5%) than when attendance at an educational session was required as a prerequisite for having the test (3.7%). Utilization was higher among respondents who were planning children. Caucasians, and those with higher educational attainment. Among respondents planning to have children, individuals with higher tolerance for test uncertainty, lower fear of stigma, and higher perceived risk of being a carrier were significantly more likely to have the test. Testing decisions were not associated with the perceived burden of a child with CF or with the likelihood of aborting for CF. Although utilization of CF carrier testing is relatively low among nonpregnant individuals, uptake is significantly higher when testing can be obtained with minimal effort. Factors associated with the decision to be tested had more to do with implications of being a carrier per se than with the concerns of having a child with CF.

Toward a Model Informed Consent Process for BRCA1 Testing: A Qualitative Assessment of Women's Attitudes

Barbara Bernhardt — 2006-10-13T16:58:20-00:00

Journal of Genetic Counseling, Vol. V6, No. 2. (1 June 1997), pp. 207-222.

Intricacies and inter-relationships between HIV disclosure and HAART: a qualitative study.

RL Klitzman — 2007-09-26T18:36:33-00:00

AIDS Care, Vol. 16, No. 5. (July 2004), pp. 628-640.

This study aimed to understand whether and how highly active antiretroviral treatment (HAART) affects views and patterns of disclosure and how disclosure interacts with treatment decisions. One hundred and fifty-two HIV-positive adults (52 MSM, 56 women and 44 IDU men) from four US cities participated in two to three-hour, semi-structured interviews in 1998-99. Results indicate that HAART interacts with and shapes HIV disclosure issues in several ways. Medications may 'out' people living with HIV. Thus, in different settings (e.g. work, prisons, drug rehabs and public situations), some try to hide medications or modify dosing schedules, which can contribute to non-adherence, and affect sexual behaviours. Disclosure of HIV and/or HAART may also result in antagonism from others who hold negative attitudes and beliefs about HAART, potentially impeding adherence. Observable side effects of medications can also 'out' individuals. Conversely, medications may improve appearance, delaying or impeding disclosure. Some wait until they are on HAART and look 'well' before disclosing; some who look healthy as a result of medication deny being HIV-positive. Alternatively, HIV disclosure can lead to support that facilitates initiation of, and adherence to, treatment. HIV disclosure and adherence can shape one another in critical ways. Yet these interactions have been under-studied and need to be further examined. Interventions and studies concerning each of these domains have generally been separate, but need to be integrated, and the importance of relationships between these two areas needs to be recognized.

How do women decide? Accepting or declining BRCA1/2 testing in a nationwide clinical sample in the United States.

P Sankar — 2006-06-07T18:07:32-00:00

Community Genet, Vol. 9, No. 2. (2006), pp. 78-86.

OBJECTIVE: To examine the role of the practitioner, informed consent, and genetic counseling in genetic testing decisions and to assess their relative influence on women's decision to have clinical BRCA1/2 testing. METHODS: Qualitative study using in-depth open-ended interviews with 68 women who had considered clinical BRCA1/2 testing. RESULTS: Slightly less than half of the women who had considered BRCA1/2 testing were found to have had a clear and preexisting desire to test or not to test, irrespective of practitioner attitude or advice. CONCLUSION: The decision to accept or decline genetic testing is the result of a complex process that goes beyond interactions between health care providers and patients, indicating a caution against exclusive reliance on informed consent or counseling encounters.

Spiritual faith and genetic testing decisions among high-risk breast cancer probands.

MD Schwartz — 2006-10-07T01:41:46-00:00

Cancer Epidemiol Biomarkers Prev, Vol. 9, No. 4. (April 2000), pp. 381-385.

Despite widespread access to genetic testing for the BRCA1 and BRCA2 breast cancer susceptibility genes, little is known about rates or predictors of test use among individuals from newly ascertained high-risk families who have self-referred for genetic counseling/testing. The objective of this study was to examine rates of test use within this population. In addition, we sought to determine whether spiritual faith and psychological factors influenced testing decisions. Participants were 290 women with familial breast cancer. All were offered genetic counseling and testing for alterations in the BRCA1 and BRCA2 genes. Baseline levels of spiritual faith, cancer-specific distress, perceived risk, and demographic factors were examined to identify independent predictors of whether participants received versus declined testing. The final logistic model revealed statistically significant main effects for spiritual faith [odds ratio (OR), 0.2; 95% confidence intervals (CIs), 0.1 and 0.5] and perceived ovarian cancer risk (OR, 2.4; 95% CIs, 1.3 and 4.7) and a statistically significant spiritual faith by perceived risk interaction effect. Among women who perceived themselves to be at low risk of developing breast cancer again, those with higher levels of spiritual faith were significantly less likely to be tested, compared with those with lower levels of faith (OR, 0.2; 95% CIs, 0.1 and 0.5). However, among women with high levels of perceived risk, rates of test use were high, regardless of levels of spiritual faith (OR, 1.2; 95% CIs, 0.4 and 3.0). These results highlight the role that spirituality may play in the decision-making process about genetic testing.

Participation in breast cancer susceptibility testing protocols: influence of recruitment source, altruism, and family involvement on women's decisions.

G Geller — 2006-09-23T23:14:54-00:00

Cancer Epidemiol Biomarkers Prev, Vol. 8, No. 4 Pt 2. (April 1999), pp. 377-383.

OBJECTIVES: We offered education, counseling, and family-based BRCA1/2 testing to women at increased risk of breast cancer and assessed (a) their reasons for participating and (b) whether source of recruitment, desire to help research (altruism), and the need to communicate with their affected relative about testing distinguish those who did and those who did not complete each phase of our protocol. MATERIALS AND METHODS: We sent invitations to 403 women who had completed a questionnaire on BRCA1/2 testing, 178 of whom were considered high risk because they had more than one relative on the same side of the family with early-onset breast cancer. RESULTS: Among the 132 high-risk respondents from the mid-Atlantic states (where testing was offered), 36% (n = 47) were interested in counseling. Those who actually attended counseling were more likely to have some college education, a higher perceived risk of breast cancer, and a greater fear of stigma and were less likely to have a daughter than those who did not attend. The reasons for attending that were rated "very important" were to learn about the test (80%), to have the test (43%), and to help research (38%). High-risk women were eligible for testing only if their affected relative was willing to be tested and tested positive. After the session, 83% intended to ask their affected relative to be tested, but only half of the affected relatives actually came for pretest counseling. The proportion of participants who ultimately involved an affected relative was 2.5 times higher among women from a clinical population (25%) than among those from a registry population (10%); in this latter population, an altruistic desire to help research was a greater motivator for participation than interest in being tested. CONCLUSIONS: Source of recruitment influences both motivations to attend education and counseling and actual testing behavior. These results have implications for interpretation of findings from studies in research settings as well as for informed consent and decision-making in the context of family-based testing.

How do obstetric providers discuss referrals for prenatal genetic counseling?

BA Bernhardt — 2006-09-27T12:31:13-00:00

J Genet Couns, Vol. 14, No. 2. (April 2005), pp. 109-117.

To investigate referrals of pregnant women to genetic counseling, we analysed transcripts from audiotaped first prenatal visits of 104 patients (72 actual patient visits and 32 simulated patient visits) with 32 providers (obstetricians and nurse-midwives). All patients had at least one indication for referral. Only 10% of visits with actual patients included a genetic counseling referral. When genetic counseling was discussed, it was only briefly described, primarily as an information session. This study shows that the majority of pregnant women with an indication for referral for genetic counseling are not referred. In addition, obstetric providers' inadequate descriptions of prenatal genetic counseling may result in women being poorly prepared for genetic counseling sessions.

Strategies for motivating Latino couples' participation in qualitative health research and their effects on sample construction.

HM Preloran — 2006-10-06T12:53:18-00:00

Am J Public Health, Vol. 91, No. 11. (November 2001), pp. 1832-1841.

Many investigators report difficulties recruiting low-income Latinos into health research projects, especially when they seek to enroll more than one family member. We developed a series of strategies that proved effective in motivating candidates who were initially reluctant to enroll. There is a possibility that these strategies biased the composition of the sample. Predictably, the reasons participants gave for enrolling were correlated with the recruitment strategy that had brought them into the study. Furthermore, we found statistically significant associations between recruitment technique and key study variables (e.g., the domestic stability of the couple). By increasing investigators' ability to recruit Latinos, however, the strategies outlined should help to ensure that Latinos' experiences are given due weight in the deliberations of medical professionals and policymakers.

Decision-making about breast cancer susceptibility testing: how similar are the attitudes of physicians, nurse practitioners, and at-risk women?

G Geller — 2006-10-17T18:56:24-00:00

J Clin Oncol, Vol. 16, No. 8. (August 1998), pp. 2868-2876.

PURPOSE: To determine what consumers and providers would want to discuss about breast cancer susceptibility testing (BCST) and their preferred role in testing decisions. METHODS: We surveyed 426 at-risk women, 143 nurse practitioners, and 296 physicians in five specialties in Maryland. RESULTS: All groups believe it is important to discuss how the chance of breast cancer can be reduced and what the chances are of getting breast cancer if the test is positive. Both provider groups attributed more importance than consumers to discussing whether cancer can occur if the test is negative. Discussing the risk of depression and anxiety was more important to providers than consumers. Eighty-two percent of women would want their providers to make a recommendation about testing, but only 43% of nurse practitioners and 68% of physicians would do so. Eighteen percent of physicians underestimated the importance of informed consent for testing and 34% of discussing the risk of insurance discrimination. Fewer than 6% of women, if found to have a mutation, would be likely to undergo prophylactic mastectomy, whereas 12% of nurse practitioners and 34% of physicians would be likely to recommend such surgery. One third of respondents in all three groups supported testing a 13-year old daughter of a mutation-carrier. CONCLUSION: Physicians should place greater value on informed consent and discussing practical aspects of testing, and physicians and nurse practitioners should pay more attention to the limitations of testing children, insurance discrimination, and consumers' desire for provider recommendations. In light of the limited discordance between nurse practitioners and consumers, nurse practitioners can play an increasing role in education and counseling about BCST.