Angela Fagerlin

Patient Involvement in Surgery Treatment Decisions for Breast Cancer

PURPOSE High rates of mastectomy and marked regional variations have motivated lingering concerns about overtreatment and failure to involve women in treatment decisions. We examined the relationship between patient involvement in decision making and type of surgical treatment for women with breast cancer. METHODS All women with ductal carcinoma-in-situ and a 20% random sample of women with invasive breast cancer aged 79 years and younger who were diagnosed in 2002 and reported to the Detroit and Los Angeles Surveillance, Epidemiology, and End Results registries were identified and surveyed shortly after receipt of surgical treatment (response rate, 77.4%; n = 1,844). RESULTS Mean age was 60.1 years; 70.2% of the women were white, 18.0% were African American, and 11.8% were from other ethnic groups. Overall, 30.2% of women received mastectomy as initial treatment. Most women reported that they made the surgical decision (41.0%) or that the decision was shared (37.1%); 21.9% of patients reported that their surgeon made the decision with or without their input. Among white women, only 5.3% of patients whose surgeon made the decision received mastectomy compared with 16.8% of women who shared the decision and 27.0% of women who made the decision (P < .001, adjusted for clinical factors, predisposing factors, and number of surgeons visited). However, this association was not observed for African American women (Wald test 10.0, P = .041). CONCLUSION Most women reported that they made or shared the decision about surgical treatment. More patient involvement in decision making was associated with greater use of mastectomy. Racial differences in the association of involvement with receipt of treatment suggest that the decision-making process varies by racial groups.

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 . To test whether the use of a quiz or pictograph decreases people’s reliance on anecdotal information. Design . Two cross-sectional survey studies using hypothetical scenarios. Participants read a scenario describing angina and indicated a preference for either bypass surgery or balloon angioplasty. The cure rate of both treatments was presented using prose, a pictograph, a quiz, or a pictograph and quiz combination. Participants read anecdotes from hypothetical patients who described the outcome of their treatment; the number of successful anecdotes was either representative or unrepresentative of the cure rates. Setting and Participants . Prospective jurors at the Philadelphia County Courthouse and travelers at the Detroit-Wayne County Metropolitan Airport. Measurements . Proportion of respondents preferring bypass over balloon angioplasty. Results . In study 1, when statistical information was presented in prose, treatment choices were influenced by anecdotes, with 41% of participants choosing bypass when the anecdotes were representative and only 20% choosing it when the anecdotes were unrepresentative (x2 = 14.40, P < 0.001). When statistics were reinforced with the pictograph and quiz, anecdotes had no significant influence on treatment decisions (38% choosing bypass when anecdotes were representative v. 44% when unrepresentative, x2 = 1.08, P > 0.20). In study 2, the tradeoff quiz did not reduce the impact of the anecdotes (27% v. 28% choosing bypass after receiving or not receiving the quiz, x2 < 1, P > 0.20). However, the pictograph significantly reduced the impact of anecdotes, with 27% choosing bypass after receiving no pictograph and 40% choosing bypass after receiving a pictograph (x2 = 6.44, P < 0.001). Conclusions . Presenting statistical information using a pictograph can reduce the undue influence of anecdotal reasoning on treatment choices.

The impact of the format of graphical presentation on health-related knowledge and treatment choices.

OBJECTIVE To evaluate the ability of six graph formats to impart knowledge about treatment risks/benefits to low and high numeracy individuals. METHODS Participants were randomized to receive numerical information about the risks and benefits of a hypothetical medical treatment in one of six graph formats. Each described the benefits of taking one of two drugs, as well as the risks of experiencing side effects. Main outcome variables were verbatim (specific numerical) and gist (general impression) knowledge. Participants were also asked to rate their perceptions of the graphical format and to choose a treatment. RESULTS 2412 participants completed the survey. Viewing a pictograph was associated with adequate levels of both types of knowledge, especially for lower numeracy individuals. Viewing tables was associated with a higher likelihood of having adequate verbatim knowledge vs. other formats (p<0.001) but lower likelihood of having adequate gist knowledge (p<0.05). All formats were positively received, but pictograph was trusted by both high and low numeracy respondents. Verbatim and gist knowledge were significantly (p<0.01) associated with making a medically superior treatment choice. CONCLUSION Pictographs are the best format for communicating probabilistic information to patients in shared decision making environments, particularly among lower numeracy individuals. PRACTICE IMPLICATIONS Providers can consider using pictographs to communicate risk and benefit information to patients of different numeracy levels.

Clinical Implications of Numeracy: Theory and Practice

BackgroundLow numeracy is pervasive and constrains informed patient choice, reduces medication compliance, limits access to treatments, impairs risk communication, and affects medical outcomes; therefore, it is incumbent upon providers to minimize its adverse effects.PurposeWe provide an overview of research on health numeracy and discuss its implications in clinical contexts.ConclusionsLow numeracy cannot be reliably inferred on the basis of patients’ education, intelligence, or other observable characteristics. Objective and subjective assessments of numeracy are available in short forms and could be used to tailor health communication. Low scorers on these assessments are subject to cognitive biases, irrelevant cues (e.g., mood), and sharper temporal discounting. Because prevention of the leading causes of death (e.g., cancer and cardiovascular disease) depends on taking action now to prevent serious consequences later, those low in numeracy are likely to require more explanation of risk to engage in prevention behaviors. Visual displays can be used to make numerical relations more transparent, and different types of displays have different effects (e.g., greater risk avoidance). Ironically, superior quantitative processing seems to be achieved by focusing on qualitative gist and affective meaning, which has important implications for empowering patients to take advantage of the evidence in evidence-based medicine.

The Influence of Race, Ethnicity, and Individual Socioeconomic Factors on Breast Cancer Stage at Diagnosis

OBJECTIVES Previous research has generally found that racial/ethnic differences in breast cancer stage at diagnosis attenuate when measures of socioeconomic status are included in the analysis, although most previous research measured socioeconomic status at the contextual level. This study investigated the relation between race/ethnicity, individual socioeconomic status, and breast cancer stage at diagnosis. METHODS Women with stage 0 to III breast cancer were identified from population-based data from the Surveillance, Epidemiology, and End Results tumor registries in the Detroit and Los Angeles metropolitan areas. These data were combined with data from a mailed survey in a sample of White, Black, and Hispanic women (n=1700). Logistic regression identified factors associated with early-stage diagnosis. RESULTS Black and Hispanic women were less likely to be diagnosed with early-stage breast cancer than were White women (P< .001). After control for study site, age, and individual socioeconomic factors, the odds of early detection were still significantly less for Hispanic women (odds ratio [OR]=0.45) and Black women (OR = 0.72) than for White women. After control for the method of disease detection, the White/Black disparity attenuated to insignificance; the decreased likelihood of early detection among Hispanic women remained significant (OR=0.59). CONCLUSION The way in which racial/ethnic minority status and socioeconomic characteristics produce disparities in womens experiences with breast cancer deserves further research and policy attention.

Population-based study of the relationship of treatment and sociodemographics on quality of life for early stage breast cancer.

Objective: To examine the relationship between cancer stage, surgical treatment and chemotherapy on quality of life (QOL) after breast cancer and determine if sociodemographic characteristics modify the observed relationships. Methods: A population-based sample of women with Stages 0–II breast cancer in the United States (N=1357) completed surveys including the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30), and the Breast Cancer-Specific Quality of Life Questionnaire (QLQ BR-23). Regression models calculated mean QOL scores across primary surgical treatment and chemotherapy. Clinically significant differences in QOL were defined as 10 point difference (out of 100) between groups. Results: Meaningful differences in QOL by surgical treatment were limited to body image with women receiving mastectomy with reconstruction reporting lower scores than women receiving breast conserving surgery (p < 0.001). Chemotherapy lowered QOL scores overall across four QOL dimensions (p values < 0.001), with a disproportionately greater impact on those with lower levels of education. Younger women reported lower QOL scores for seven of nine QOL dimensions (p values < 0.001). Conclusions: Women should be reassured that few QOL differences exist based on surgical treatment, however, clinicians should recognize that the impact of treatment on QOL does vary by a woman’s age and educational level.

Stability of older adults' preferences for life-sustaining medical treatment.

The use of instructional advance directives assumes that preferences for life-sustaining medical treatment remain stable over time and across changes in life condition. A sample of 332 older adults recorded their preferences for 4 life-sustaining treatments in 9 illness scenarios. These preferences were elicited again 1 and 2 years after the original interview. Overall, preferences for life-sustaining treatment were moderately stable over time, but stability varied significantly across judgments. Preferences were most stable for illness scenarios that were most and least serious and for decisions to refuse treatment. Age, gender, education, and prior completion of an advance directive were all related to preference stability, and evidence indicated that declines in physical or psychological functioning resulted in decreased interest in life-sustaining treatment.

A Matter of Perspective: Choosing for Others Differs from Choosing for Yourself in Making Treatment Decisions

AbstractBACKGROUND: 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. All read 2 short scenarios about vaccinations for a deadly flu and treatments for a slow-growing cancer. PARTICIPANTS: Two thousand three hundred and ninety-nine people drawn from a demographically stratified internet sample. MEASURES: Chosen or recommended treatments. We also measured participants’ emotional response to our task. RESULTS: Preferences for risk-reducing active treatments were significantly stronger for participants imagining themselves as medical professionals than for those imagining themselves as patients (vaccination: 73% [physician] & 63% [medical director] vs 48% [patient], Ps<.001; chemotherapy: 68% & 68% vs 60%, Ps<.012). Similar results were observed for the parental role (vaccination: 57% vs 48%, P=.003; chemotherapy: 72% vs 60%, P<.001). Reported emotional reactions were stronger in the responsible medical professional and parental roles yet were also independently associated with treatment choice, with higher scores associated with reduced omission tendencies (OR=1.15 for both regressions, Ps<.01). CONCLUSIONS: Treatment preferences may be substantially influenced by a decision-making role. As certain roles appear to reinforce “big picture” thinking about difficult risk tradeoffs, physicians and patients should consider re-framing treatment decisions to gain new, and hopefully beneficial, perspectives.

Context Changes Choices: A Prospective Study of the Effects of Hospitalization on Life-Sustaining Treatment Preferences

Objective.Policy and law encouraging individuals to document their wishes for life-sustaining medical treatment in advance of serious illness assumes that these wishes are unaffected by changes in health condition. To test this assumption, the authors examine the life-sustaining treatment preferences of a sample of elderly adults prior to, soon after, and several months after a hospitalization experience. Subjects and Methods. As part of the Advance Directives, Values Assessment, and Communication Enhancement (ADVANCE) project, 401 individuals older than age 65 participated in 3 annual interviews. A subsample of 88 individuals who were hospitalized for greater than 48 hours during the course of the study participated in an additional “recovery” interview conducted soon after their release from the hospital (M = 14 days postdischarge). At each interview, subjects indicated their desire to receive 4 life-sustaining medical treatments in 4 serious illness scenarios.Results. Treatment preferences showed a significant “hospitalization dip,” with subjects reporting less desire to receive life-sustaining treatment at the recovery interview than they did at the annual interview conducted prior to hospitalization, but with desire returning to near prehospitalization levels at the annual interview conducted several months after hospitalization. This dip was more pronounced in preferences for cardiopulmonary resuscitation and artificial nutrition and hydration than in preferences for less invasive treatments. Conclusions. Preferences for life-sustaining treatment are dependent on the context in which they are made, and thus individuals may express different treatment preferences when they are healthy than when they are ill. These results challenge a key psychological assumption underlying the use of instructional advance directives in end-of-life decision making.

Communicating Side Effect Risks in a Tamoxifen Prophylaxis Decision Aid: The Debiasing Influence of Pictographs

OBJECTIVE To experimentally test whether using pictographs (image matrices), incremental risk formats, and varied risk denominators would influence perceptions and comprehension of side effect risks in an online decision aid about prophylactic use of tamoxifen to prevent primary breast cancers. METHODS We recruited 631 women with elevated breast cancer risk from two healthcare organizations. Participants saw tailored estimates of the risks of 5 side effects: endometrial cancer, blood clotting, cataracts, hormonal symptoms, and sexual problems. Presentation format was randomly varied in a three factor design: (A) risk information was displayed either in pictographs or numeric text; (B) presentations either reported total risks with and without tamoxifen or highlighted the incremental risk most relevant for decision making; and (C) risk estimates used 100 or 1000 person denominators. Primary outcome measures included risk perceptions and gist knowledge. RESULTS Incremental risk formats consistently lowered perceived risk of side effects but resulted in low knowledge when displayed by numeric text only. Adding pictographs, however, produced significantly higher comprehension levels. CONCLUSIONS Pictographs make risk statistics easier to interpret, reducing biases associated with incremental risk presentations. PRACTICE IMPLICATIONS Including graphs in risk communications is essential to support an informed treatment decision-making process.