Discordant Care and Decision Quality: Patients' Reasons for Not Receiving Their Initial Test of Choice in Colorectal Cancer Screening.

Background: Concordance between a person's values and the test or treatment they ultimately receive is widely considered to be an essential outcome for good decision quality. There is little research, however, on why patients receive "discordant" care. A large, randomized trial of decision aids for colorectal cancer (CRC) screening provided an opportunity to assess why some patients received a different test than the one they preferred at an earlier time point.

Measuring the Impact of Quantitative Information on Patient Understanding: Approaches for Assessing the Adequacy of Patient Knowledge about Colorectal Cancer Screening.

Unlabelled: Guidelines recommend that decision aids disclose quantitative information to patients considering colorectal cancer (CRC) screening, but the impact on patient knowledge and decision making is limited. An important challenge for assessing any disclosure involves determining when an individual has "adequate knowledge" to make a decision. We analyzed data from a trial that randomized 213 patients to view a decision aid about CRC screening that contained verbal information (qualitative arm) versus one containing verbal plus quantitative information (quantitative arm).

Biobank Participants' Attitudes toward Requiring Understanding for Biobank Consent.

Biobank participants often do not understand the information they are provided during the informed consent process. Ethicists and other stakeholders have disagreed, however, on the appropriate response to these failures in understanding. This paper describes an attempt to address this issue by conducting knowledge tests with 22 recent biobank enrollees, followed by in-depth, semistructured interviews about the goal of understanding in biobank consent.

Layperson Views about the Design and Evaluation of Decision Aids: A Public Deliberation.

Purpose: We carried out the first public deliberation to elicit lay input regarding guidelines for the design and evaluation of decision aids, focusing on the example of colorectal ("colon") cancer screening.

Methods: A random, demographically stratified sample of 28 laypeople convened for 4 days, during which they were informed about key issues regarding colon cancer, screening tests, risk communication, and decision aids. Participants then deliberated in small and large group sessions about the following: 1) What information should be included in all decision aids for colon screening? 2) What risk information should be in a decision aid and how should risk information be presented? 3) What makes a screening decision a good one (reasonable or legitimate)? 4) What makes a decision aid and the advice it provides trustworthy? With the help of a trained facilitator, the deliberants formulated recommendations, and a vote was held on each to identify support and alternative views.

Incorporating Biobank Consent into a Healthcare Setting: Challenges for Patient Understanding.

Biobank participants often do not understand much of the information they are provided as part of the informed consent process, despite numerous attempts at simplifying consent forms and improving their readability. We report the first assessment of biobank enrollees' comprehension under an "integrated consent" process, where patients were asked to enroll in a research biobank as part of their normal healthcare experience. A number of healthcare systems have implemented similar integrated consent processes for biobanking, but it is unknown how much patients understand after enrolling under these conditions.

An arts-based educational exhibit on menopausal hot flashes.

Objective: The aim of this study was to describe the development process, science, and symbolism of an arts-based educational exhibit designed to address myths, misinformation, negative imagery, and use of unproven treatments related to menopausal hot flashes.

Methods: The development process included iterative and informal feedback from a variety of individuals, a partnership with an experienced exhibit designer, and collaborations between artists and scientists.

Results: The resulting exhibit creates an environment where the public is immersed in accurate information about hot flashes.

Public survey reactions to an arts-based educational menopausal hot flash exhibit.

Objective: The aim of this study was to obtain public survey reactions to concept art for an exhibit about menopausal hot flashes designed to stimulate learning, dispel myths, spur dialogue, and increase empathy.

Methods: Immediately before viewing the art, participants provided demographic information and answered one open-ended question. Immediately after viewing the art, participants answered the same open-ended question, one additional open-ended question, and completed quantitative survey questions.

Focus group reactions to an arts-based educational exhibit on menopausal hot flashes.

Objective: To assess public reactions to an arts-based educational exhibit designed to immerse and engage people in scientific facts to increase their conceptual understanding of hot flashes. Our ultimate goals were to stimulate learning and conversations about menopausal hot flashes to change interactions between menopausal women and providers, and menopausal women and other people (family, friends, etc). Focus groups reacted to the concept art (graphics, miniaturized model); and a questionnaire for quickly assessing reactions.

Impact of including quantitative information in a decision aid for colorectal cancer screening: A randomized controlled trial.

Objective: Guidelines recommend that decision aids provide quantitative information about risks and benefits of available options. Impact of providing this information is unknown.

Methods: Randomized trial comparing two decision aids about colorectal cancer (CRC) screening with colonoscopy or fecal immunochemical test (FIT).

Ambulatory Advanced Cancer Patients' and Oncologists' Estimates of Life Expectancy Are Associated with Patient Psychological Characteristics But Not Chemotherapy Use.

Background: Patients with advanced cancer often face distressing decisions about chemotherapy. There are conflicting data on the relationships among perceived prognosis, psychological characteristics, and chemotherapy use, which impair the refinement of decision support interventions.

Objective: Clarify the relationships among patient and oncologist estimates of life expectancy for 6 and 12 months, chemotherapy use, and patient psychological characteristics.

Providing Quantitative Information and a Nudge to Undergo Stool Testing in a Colorectal Cancer Screening Decision Aid: A Randomized Clinical Trial.

Background: Guidelines recommend that patient decision aids should provide quantitative information about probabilities of potential outcomes, but the impact of this information is unknown. Behavioral economics suggests that patients confused by quantitative information could benefit from a "nudge" towards one option. We conducted a pilot randomized trial to estimate the effect sizes of presenting quantitative information and a nudge.

A Randomized Comparative Effectiveness Trial for Preventing Type 2 Diabetes.

Objectives: We evaluated the weight loss effectiveness of a YMCA model for the Diabetes Prevention Program (DPP) lifestyle intervention.

Methods: Between July 2008 and November 2010, we individually randomized 509 overweight or obese, low-income, nondiabetic adults with elevated blood glucose in Indianapolis, Indiana, to receive standard care plus brief lifestyle counseling or be offered a group-based YMCA adaptation of the DPP (YDPP). Primary outcome was mean weight loss difference at 12 months.

Retention strategies in longitudinal studies with emerging adults.

Purpose/objectives: The purpose of this report was to describe retention strategies that were useful and those that were not in a longitudinal study of emerging adults.

Background: A longitudinal study examining the transition to young adulthood among emerging adults with type 1 diabetes, which had success in retention, provided the context for describing retention strategies.

Rationale: A challenge in longitudinally designed studies is retention of participants because the loss decreases power for statistical analysis.

Rationale, design, and baseline characteristics of a community-based comparative effectiveness trial to prevent type 2 diabetes in economically disadvantaged adults: the RAPID Study.

Reaching Out and Preventing Increases in Diabetes (RAPID) is a community-based randomized trial evaluating the comparative costs and effectiveness of a group-based adaption of the DPP lifestyle intervention developed and implemented in partnership with the YMCA. RAPID enrolled adult primary care patients, with BMI 24 kg/m(2) or higher and abnormal glucose metabolism (HbA1c 5.7-6.

Discussions of life expectancy moderate relationships between prognosis and anxiety or depression in men with advanced cancer.

Purpose: Oncologists avoid prognostic discussions due to concerns about increasing patients' anxiety or depression. We sought to determine if perceived prognosis or extent of prognostic discussions predicted anxiety or depression and whether prognostic discussions moderated the relationship between prognosis and anxiety or depression.

Methods: Men with advanced cancer and their oncologists estimated the likelihood of survival at 6 months and reported extent of prognostic discussions.