Suzanne K. Linder

Presenting quantitative information about decision outcomes: a risk communication primer for patient decision aid developers

BackgroundMaking evidence-based decisions often requires comparison of two or more options. Research-based evidence may exist which quantifies how likely the outcomes are for each option. Understanding these numeric estimates improves patients’ risk perception and leads to better informed decision making. This paper summarises current “best practices” in communication of evidence-based numeric outcomes for developers of patient decision aids (PtDAs) and other health communication tools.MethodAn expert consensus group of fourteen researchers from North America, Europe, and Australasia identified eleven main issues in risk communication. Two experts for each issue wrote a “state of the art” summary of best evidence, drawing on the PtDA, health, psychological, and broader scientific literature. In addition, commonly used terms were defined and a set of guiding principles and key messages derived from the results.ResultsThe eleven key components of risk communication were: 1) Presenting the chance an event will occur; 2) Presenting changes in numeric outcomes; 3) Outcome estimates for test and screening decisions; 4) Numeric estimates in context and with evaluative labels; 5) Conveying uncertainty; 6) Visual formats; 7) Tailoring estimates; 8) Formats for understanding outcomes over time; 9) Narrative methods for conveying the chance of an event; 10) Important skills for understanding numerical estimates; and 11) Interactive web-based formats. Guiding principles from the evidence summaries advise that risk communication formats should reflect the task required of the user, should always define a relevant reference class (i.e., denominator) over time, should aim to use a consistent format throughout documents, should avoid “1 in x” formats and variable denominators, consider the magnitude of numbers used and the possibility of format bias, and should take into account the numeracy and graph literacy of the audience.ConclusionA substantial and rapidly expanding evidence base exists for risk communication. Developers of tools to facilitate evidence-based decision making should apply these principles to improve the quality of risk communication in practice.

A Survey on Data Reproducibility in Cancer Research Provides Insights into Our Limited Ability to Translate Findings from the Laboratory to the Clinic

Background The pharmaceutical and biotechnology industries depend on findings from academic investigators prior to initiating programs to develop new diagnostic and therapeutic agents to benefit cancer patients. The success of these programs depends on the validity of published findings. This validity, represented by the reproducibility of published findings, has come into question recently as investigators from companies have raised the issue of poor reproducibility of published results from academic laboratories. Furthermore, retraction rates in high impact journals are climbing. Methods and Findings To examine a microcosm of the academic experience with data reproducibility, we surveyed the faculty and trainees at MD Anderson Cancer Center using an anonymous computerized questionnaire; we sought to ascertain the frequency and potential causes of non-reproducible data. We found that ∼50% of respondents had experienced at least one episode of the inability to reproduce published data; many who pursued this issue with the original authors were never able to identify the reason for the lack of reproducibility; some were even met with a less than “collegial” interaction. Conclusions These results suggest that the problem of data reproducibility is real. Biomedical science needs to establish processes to decrease the problem and adjudicate discrepancies in findings when they are discovered.

Primary Care Physicians’ Use of an Informed Decision-Making Process for Prostate Cancer Screening

PURPOSE Leading professional organizations acknowledge the importance of an informed decision-making process for prostate cancer screening. We describe primary care physicians’ reports of their prescreening discussions about the potential harms and benefits of prostate cancer screening. METHODS Members of the American Academy of Family Physicians National Research Network responded to a survey that included (1) an indicator of practice styles related to discussing harms and benefits of prostate-specific antigen testing and providing a screening recommendation or letting patients decide, and (2) indicators reflecting physicians’ beliefs about prostate cancer screening. The survey was conducted between July 2007 and January 2008. RESULTS Of 426 physicians 246 (57.7%) completed the survey questionnaire. Compared with physicians who ordered screening without discussion (24.3%), physicians who discussed harms and benefits with patients and then let them decide (47.7%) were more likely to endorse beliefs that scientific evidence does not support screening, that patients should be told about the lack of evidence, and that patients have a right to know the limitations of screening; they were also less likely to endorse the belief that there was no need to educate patients because they wanted to be screened. Concerns about medicolegal risk associated with not screening were more common among physicians who discussed the harms and benefits and recommended screening than among physicians who discussed screening and let their patients decide. CONCLUSIONS Much of the variability in physicians’ use of an informed decision-making process can be attributed to beliefs about screening. Concerns about medicolegal risk remain an important barrier for shared decision making.

Beyond Reading Level: A Systematic Review of the Suitability of Cancer Education Print and Web-based Materials

Consideration of categories related to reading comprehension—beyond reading level—is imperative to reach low literacy populations effectively. “Suitability” has been proposed as a term to encompass six categories of such factors: content, literacy demand graphics, layout/typography, learning stimulation, and cultural appropriateness. Our purpose was to describe instruments used to evaluate categories of suitability in cancer education materials in published reports and their findings. We searched databases and reference lists for evaluations of print and Web-based cancer education materials to identify and describe measures of these categories. Studies had to evaluate reading level and at least one category of suitability. Eleven studies met our criteria. Seven studies reported inter-rater reliability. Cultural appropriateness was most often assessed; four instruments assessed only surface aspects of cultural appropriateness. Only two of seven instruments used, the suitability assessment of materials (SAM) and the comprehensibility assessment of materials (SAM + CAM), were described as having any evidence of validity. Studies using Simplified Measure of Goobledygook (SMOG) and Fry reported higher average reading level scores than those using Flesh-Kincaid. Most materials failed criteria for reading level and cultural appropriateness. We recommend more emphasis on the categories of suitability for those developing cancer education materials and more study of these categories and reliability and validity testing of instruments.

Feasibility of a patient decision aid about lung cancer screening with low-dose computed tomography.

OBJECTIVE New clinical guidelines endorse the use of low-dose computed tomography (LDCT) for lung cancer screening among selected heavy smokers while recommending patients be counseled about the potential benefits and harms. We developed and field tested a brief, video-based patient decision aid about lung cancer screening. METHODS Smokers in a cancer center tobacco treatment program aged 45 to 75 years viewed the video online between November 2011 and September 2012. Acceptability, knowledge, and clarity of values related to the decision were assessed. RESULTS Fifty-two patients completed the study (mean age=58.5 years; mean duration smoking=34.8 years). Acceptability of the aid was high. Most patients (78.8%) indicated greater interest in screening after viewing the aid. Knowledge about lung cancer screening increased significantly as a result of viewing the aid (25.5% of questions answered correctly before the aid, and 74.8% after; P<.01) although understanding of screening eligibility remained poor. Patients reported being clear about which benefits and harms of screening mattered most to them (94.1% and 86.5%, respectively). CONCLUSIONS Patients have high information needs related to lung cancer screening. A video-based decision aid may be helpful in promoting informed decision-making, but its impact on lung cancer screening decisions needs to be explored.

Validity of a Low Literacy Version of the Decisional Conflict Scale

OBJECTIVE To evaluate the psychometric properties of the 4-factor low literacy Decisional Conflict Scale (DCS-LL) with men eligible for prostate cancer screening (PCS). METHODS We used baseline (T0; n=149) and post-intervention (T2; n=89) data from a randomized, controlled trial of a PCS decision aid to assess internal consistency reliability and construct, discriminant, and factor validity. RESULTS There was evidence of excellent internal consistency reliability (αs≥.80) and fair construct validity (most rs≥.40) for the DCS-LL except for the Supported subscale. The DCS-LL was able to discriminate between men who had decided and those who had not. There was evidence for the original 4-factor model at T0 but exploratory analysis suggested a 3-factor solution at T0 and T2 with Informed and Value Clarity as one factor. CONCLUSION For men eligible for PCS, feeling informed and feeling clear about values may not reflect distinct cognitive processes. Feeling supported may not be a factor contributing to uncertainty. PRACTICE IMPLICATIONS Research should address whether current DCS subscales best represent the factors that contribute to uncertainty for PCS and for other screening decisions. Research should also explore the influence of health literacy on the factor structure of the DCS-LL.

Lung cancer screening using low-dose CT: the current national landscape.

OBJECTIVES Although the National Lung Screening Trial (NLST) lauds the efficacy of low-dose computed tomography (LDCT) at reducing lung cancer mortality, it has not been widely used for population-based screening. By examining the availability of U.S. LDCT screening centers, and underlying rates of lung cancer incidence, mortality, and smoking prevalence, the need for additional centers may be determined. MATERIALS AND METHODS Locations of 203 LDCT screening centers from the Lung Cancer Alliance Screening Centers of Excellence database, a list of active NLST and International Early Lung and Cardiac Action Program (I-ELCAP) screening centers, and an independently conducted survey of Society of Thoracic Radiology members were geocoded and mapped. County-level rates of lung cancer incidence, mortality, and smoking prevalence were also mapped and overlaid with the locations of the 203 LDCT screening centers. RESULTS AND CONCLUSIONS Results showed the majority of LDCT screening centers were located in the counties with the highest quartiles of lung cancer incidence and mortality in the Northeast and East North Central states, but several high-risk states had no or few identified screening centers including Oklahoma, Nevada, Mississippi, and Arkansas. As guidelines are implemented and reimbursement for LDCT screening follows, equitable access to LDCT screening centers will become increasingly important, particularly in regions with high rates of lung cancer incidence and smoking prevalence.

Patient Decision Aids for Colorectal Cancer Screening: A Systematic Review and Meta-analysis

CONTEXT Decision aids prepare patients to make decisions about healthcare options consistent with their preferences. Helping patients choose among available options for colorectal cancer screening is important because rates are lower than screening for other cancers. This systematic review describes studies evaluating patient decision aids for colorectal cancer screening in average-risk adults and their impact on knowledge, screening intentions, and uptake. EVIDENCE ACQUISITION Sources included Ovid MEDLINE, Elsevier EMBASE, EBSCO CINAHL Plus, Ovid PsycINFO through July 21, 2015, pertinent reference lists, and Cochrane review of patient decisions aids. Reviewers independently selected studies that quantitatively evaluated a decision aid compared to one or more conditions or within a pre-post evaluation. Using a standardized form, reviewers independently extracted study characteristics, interventions, comparators, and outcomes. Analysis was conducted in August 2015. EVIDENCE SYNTHESIS Twenty-three articles representing 21 trials including 11,900 subjects were eligible. Patients exposed to a decision aid showed greater knowledge than those exposed to a control condition (mean difference=18.3 of 100; 95% CI=15.5, 21.1), were more likely to be interested in screening (pooled relative risk=1.5; 95% CI=1.2, 2.0), and more likely to be screened (pooled relative risk=1.3; 95% CI=1.1, 1.4). Decision aid patients had greater knowledge than patients receiving general colorectal cancer screening information (pooled mean difference=19.3 of 100; 95% CI=14.7, 23.8); however, there were no significant differences in screening interest or behavior. CONCLUSIONS Decision aids improve knowledge and interest in screening, and lead to increased screening over no information, but their impact on screening is similar to general colorectal cancer screening information.

Computed tomography screening for lung cancer: a survey of society of thoracic radiology members.

Purpose: This study aimed to determine the availability, attributes, and hindrances of current and developing US lung cancer screening programs. Materials and Methods: An electronic questionnaire was sent to the membership of the Society of Thoracic Radiology in August 2013 and remained open for 4 weeks. Of the 225 US-based members, we received 140 responses representing 82 unique health care institutions. Descriptive statistics were used to characterize the responding health care institutions’ LDCT screening availability and components. Results: A majority of responding institutions reported having an active LDCT screening program (65.9%). Of the responding institutions without an active program, 89.3% reported they were considering having an LDCT screening program in the future, and 35.7% (n=10) indicated the developing status of screening recommendations as a motivating factor in not offering a screening program. Forty-four percent of participating LDCT screening centers reported that their services were self-pay only, and nearly half charged a rate of

The Risk Paradox: Use of Elective Cholecystectomy in Older Patients Is Independent of Their Risk of Developing Complications

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