Caitlin Gutheil

The value of personalised risk information: a qualitative study of the perceptions of patients with prostate cancer

Objective To explore the experiences of patients with prostate cancer with risk information and their perceptions of the value of personalised risk information in treatment decisions. Design A qualitative study was conducted using focus groups. Semistructured interviews explored participants’ experiences with using risk information, and their perceptions of the potential value of personalised risk information produced by clinical prediction models. Participants English-speaking patients, ages 54–82, diagnosed with prostate cancer within the past 3 years, residing in rural and non-rural geographic locations in Maine (USA), and attending prostate cancer patient support groups. Setting 6 focus groups were conducted with 27 patients; separate groups were held for patients with low-risk, medium-risk and high-risk disease defined by National Comprehensive Cancer Network guidelines. Results Several participants reported receiving risk information that was imprecise rather than precise, qualitative rather than quantitative, indirect rather than direct and focused on biomarker values rather than clinical outcomes. Some participants felt that personalised risk information could be useful in helping them make better informed decisions, but expressed scepticism about its value. Many participants favoured decision-making strategies that were heuristic-based and intuitive rather than risk-based and deliberative, and perceived other forms of evidence—emotions, recommendations of trusted physicians, personal narratives—as more reliable and valuable in treatment decisions. Conclusions Patients with prostate cancer appear to have little experience using personalised risk information, may favour heuristic-based over risk-based decision-making strategies and may perceive personalised risk information as less valuable than other types of evidence. These decision-making approaches and perceptions represent potential barriers to the clinical use of personalised risk information. Overcoming these barriers will require providing patients with greater exposure to risk information, education about the nature and value of personalised risk information and training in deliberative decision-making strategies. More research is needed to confirm these findings and address these needs.

Unknown Risks: Parental Hesitation about Vaccination.

Objective. This qualitative study of a select sample of vaccine-hesitant parents (VHPs) explores perceived and constructed personal judgments about the risks and uncertainties associated with vaccines and vaccine-preventable diseases (VPDs) and how these subjective risk judgments influence parents’ decisions about childhood vaccination. Methods. The study employed semistructured focus group interviews with 42 VHPs to elicit parents’ perceptions and thought processes regarding the risks associated with vaccination and nonvaccination, the sources of these perceptions, and their approach to decision making about vaccination for their children. Results. VHPs engage in various reasoning processes and tend to perceive risks of vaccination as greater than the risks of VPDs. At the same time, VHPs engage in other reasoning processes that lead them to perceive ambiguity in information about the harms of vaccination—citing concerns about the missing, conflicting, changing, or otherwise unreliable nature of information. Conclusions. VHPs’ refusal of vaccination may reflect their aversion to both the risk and ambiguity they perceive to be associated with vaccination. Mitigating this vaccine hesitancy likely requires reconstructing the risks and ambiguities associated with vaccination—a challenging task that requires providing parents with meaningful evidence-based information on the known risks of vaccination versus VPDs and explicitly acknowledging the risks that remain truly unknown.

Individual differences in aversion to ambiguity regarding medical tests and treatments: association with cancer screening cognitions

Background: Aversion to “ambiguity”—uncertainty about the reliability, credibility, or adequacy of information—about medical tests and treatments is an important psychological response that varies among individuals, but little is known about its nature and extent. The purpose of this study was to examine how individual-level ambiguity aversion relates to important health cognitions related to different cancer screening tests. Methods: A survey of 1,074 adults, ages 40 to 70 years, was conducted in four integrated U.S. healthcare systems. The Ambiguity Aversion in Medicine (AA-Med) scale, a measure of individual differences in aversion to ambiguity (AA) about medical tests and treatments, was administered along with measures of several cancer screening-related cognitions: perceived benefits and harms of colonoscopy, mammography, and PSA screening, and ambivalence and future intentions regarding these tests. Multivariable analyses were conducted to assess the associations between AA-Med scores and cancer screening cognitions. Results: Individual-level AA as assessed by the AA-Med scale was significantly associated (P < 0.05) with lower perceived benefits, greater perceived harms, and greater ambivalence about all three screening tests, and lower intentions for colonoscopy but not mammography or PSA screening. Conclusion: Individual-level AA is broadly and simultaneously associated with various pessimistic cognitive appraisals of multiple cancer screening tests. The breadth of these associations suggests that the influence of individual-level AA is insensitive to the degree and nonspecific with respect to the causes of ambiguity. Impact: Individual-level AA constitutes a measurable, wide-ranging cognitive bias against medical intervention, and more research is needed to elucidate its mechanisms and effects. Cancer Epidemiol Biomarkers Prev; 23(12); 2916–23. ©2014 AACR.

Factors Affecting Physicians’ Intentions to Communicate Personalized Prognostic Information to Cancer Patients at the End of Life An Experimental Vignette Study

Purpose. To explore the effects of personalized prognostic information on physicians’ intentions to communicate prognosis to cancer patients at the end of life, and to identify factors that moderate these effects. Methods. A factorial experiment was conducted in which 93 family medicine physicians were presented with a hypothetical vignette depicting an end-stage gastric cancer patient seeking prognostic information. Physicians’ intentions to communicate prognosis were assessed before and after provision of personalized prognostic information, while emotional distress of the patient and ambiguity (imprecision) of the prognostic estimate were varied between subjects. General linear models were used to test the effects of personalized prognostic information, patient distress, and ambiguity on prognostic communication intentions, and potential moderating effects of 1) perceived patient distress, 2) perceived credibility of prognostic models, 3) physician numeracy (objective and subjective), and 4) physician aversion to risk and ambiguity. Results. Provision of personalized prognostic information increased prognostic communication intentions (P < 0.001, η2 = 0.38), although experimentally manipulated patient distress and prognostic ambiguity had no effects. Greater change in communication intentions was positively associated with higher perceived credibility of prognostic models (P = 0.007, η2 = 0.10), higher objective numeracy (P = 0.01, η2 = 0.09), female sex (P = 0.01, η2 = 0.08), and lower perceived patient distress (P = 0.02, η2 = 0.07). Intentions to communicate available personalized prognostic information were positively associated with higher perceived credibility of prognostic models (P = 0.02, η2 = 0.09), higher subjective numeracy (P = 0.02, η2 = 0.08), and lower ambiguity aversion (P = 0.06, η2 = 0.04). Conclusions. Provision of personalized prognostic information increases physicians’ prognostic communication intentions to a hypothetical end-stage cancer patient, and situational and physician characteristics moderate this effect. More research is needed to confirm these findings and elucidate the determinants of prognostic communication at the end of life.

Tolerance of uncertainty: A systematic review of health and healthcare-related outcomes

BACKGROUND Uncertainty tolerance (UT) is thought to be a characteristic of individuals that influences various outcomes related to health, healthcare, and healthcare education. We undertook a systematic literature review to evaluate the state of the evidence on UT and its relationship to these outcomes. METHODS We conducted electronic and bibliographic searches to identify relevant studies examining associations between UT and health, healthcare, or healthcare education outcomes. We used standardized tools to assess methodological quality and analyzed the major findings of existing studies, which we organized and classified by theme. RESULTS Searches yielded 542 potentially relevant articles, of which 67 met inclusion criteria. Existing studies were heterogeneous in focus, setting, and measurement approach, were largely cross-sectional in design, and overall methodological quality was low. UT was associated with various trainee-centered, provider-centered, and patient-centered outcomes which were cognitive, emotional, and behavioral in nature. UT was most consistently associated with emotional well-being. CONCLUSIONS Uncertainty tolerance is associated with several important trainee-, provider-, and patient-centered outcomes in healthcare and healthcare education. However, low methodological quality, study design limitations, and heterogeneity in the measurement of UT limit strong inferences about its effects, and addressing these problems is a critical need for future research.

The evolution of uncertainty in second opinions about prostate cancer treatment

People who have cancer increasingly seek second opinions. Yet, we know little about what motivates patients to seek them and how beneficial they are. Uncertainty—experienced by patients or communicated by physician and patient—may be crucial throughout the second opinion process.