Patient and physician views of shared decision making in cancer.

CONTEXT: Engaging patients in shared decision making involves patient knowledge of treatment options and physician elicitation of patient preferences. OBJECTIVE: Our aim was to explore patient and physician perceptions of shared decision making in clinical encounters for cancer care. DESIGN: Patients and physicians were asked open-ended questions regarding their perceptions of shared decision making throughout their cancer care. Transcripts of interviews were coded and analysed for shared decision-making themes. SETTING AND PARTICIPANTS: At an academic medical centre, 20 cancer patients with a range of cancer diagnoses, stages of cancer and time from diagnosis, and eight physicians involved in cancer care were individually interviewed. DISCUSSION AND CONCLUSIONS: Most physicians reported providing patients with written information. However, most patients reported that written information was too detailed and felt that the physicians did not assess the level of information they wished to receive. Most patients wanted to play an active role in the treatment decision, but also wanted the physician's recommendation, such as what their physician would choose for him/herself or a family member in a similar situation. While physicians stated that they incorporated patient autonomy in decision making, most provided data without making treatment recommendations in the format preferred by most patients. We identified several communication gaps in cancer care. While patients want to be involved in the decision-making process, they also want physicians to provide evidence-based recommendations in the context of their individual preferences. However, physicians often are reluctant to provide a recommendation that will bias the patient.

An entertainment-education colorectal cancer screening decision aid for African American patients: A randomized controlled trial.

BACKGROUND: Colorectal cancer screening rates for African American patients remain suboptimal. Patient decision aids designed with an entertainment-education approach have been shown to improve saliency and foster informed decision making. The purpose of this study was to assess whether an entertainment-education decision aid tailored for African American patients improved patients' decision making, attitudes, intentions, or colorectal cancer screening behavior. METHODS: Eighty-nine participants were randomized to view 1) a patient decision aid video containing culturally tailored information about colorectal cancer screening options and theory-based support in decision making presented in an entertainment-education format or 2) an attention control video about hypertension that contained similarly detailed information. Participants met with their clinician and then completed follow-up questionnaires assessing their knowledge, decisional conflict, self-advocacy, attitudes, perceived social norms, and intentions. At 3 months, completion of screening was assessed by chart review. RESULTS: Viewing the culturally tailored decision aid significantly increased African American patients' knowledge of colorectal cancer screening recommendations and options. It also significantly reduced their decisional conflict and improved their self-advocacy. No significant differences were observed in participants' attitudes, norms, or intentions. At three months, 23% of all patients had completed a colonoscopy. CONCLUSIONS: Designing targeted, engaging patient decision aids for groups that receive suboptimal screening holds promise for improving patient decision making and self-advocacy. Additional research is warranted to investigate the effectiveness of such aids in clinical practices with suboptimal screening rates and on downstream behaviors (such as repeat testing). Cancer 2017;123:1401-1408. © 2016 American Cancer Society.

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.

A brief measure of Smokers' knowledge of lung cancer screening with low-dose computed tomography.

We describe the development and psychometric properties of a new, brief measure of smokers' knowledge of lung cancer screening with low-dose computed tomography (LDCT). Content experts identified key facts smokers should know in making an informed decision about lung cancer screening. Sample questions were drafted and iteratively refined based on feedback from content experts and cognitive testing with ten smokers. The resulting 16-item knowledge measure was completed by 108 heavy smokers in Houston, Texas, recruited from 12/2014 to 09/2015. Item difficulty, item discrimination, internal consistency and test-retest reliability were assessed. Group differences based upon education levels and smoking history were explored. Several items were dropped due to ceiling effects or overlapping constructs, resulting in a 12-item knowledge measure. Additional items with high item uncertainty were retained because of their importance in informed decision making about lung cancer screening. Internal consistency reliability of the final scale was acceptable (KR-20 = 0.66) and test-retest reliability of the overall scale was 0.84 (intraclass correlation). Knowledge scores differed across education levels (F = 3.36, p = 0.04), while no differences were observed between current and former smokers (F = 1.43, p = 0.24) or among participants who met or did not meet the 30-pack-year screening eligibility criterion (F = 0.57, p = 0.45). The new measure provides a brief, valid and reliable indicator of smokers' knowledge of key concepts central to making an informed decision about lung cancer screening with LDCT, and can be part of a broader assessment of the quality of smokers' decision making about lung cancer screening.

A framework for evaluating the cost-effectiveness of patient decision aids: A case study using colorectal cancer screening.

OBJECTIVE: Patient decision aids are important tools for facilitating balanced, evidence-based decision making. However, the potential of decision aids to lower health care utilization and costs is uncertain; few studies have investigated the cost-effectiveness of decision aids that change patient behavior. Using an example of a decision aid for colorectal cancer screening, we provide a framework for analyzing the cost-effectiveness of decision aids. METHODS: A decision-analytic model with two strategies (decision aid or no decision aid) was used to calculate expected costs in U.S. dollars and benefits measured in life-years saved (LYS). Data from a systematic review of ten studies about decision aid effectiveness was used to calculate the percentage increase in the number of people choosing screening instead of no screening. We then calculated the incremental cost per LYS with the use of the decision aid. RESULTS: The no decision aid strategy had an expected cost of $3023 and yielded 18.19 LYS. The decision aid strategy cost $3249 and yielded 18.20 LYS. The incremental cost-effectiveness ratio for the decision aid strategy was $36,126 per LYS. Results were sensitive to the cost of the decision aid and the percentage change in behavior caused by the decision aid. CONCLUSIONS: This study provides proof-of-concept evidence for future studies examining the cost-effectiveness of decision aids. The results suggest that decision aids can be beneficial and cost-effective.

The risk paradox: use of elective cholecystectomy in older patients is independent of their risk of developing complications.

BACKGROUND: We recently developed and validated a prognostic model that accurately predicts the 2-year risk of emergent gallstone-related hospitalization in older patients presenting with symptomatic gallstones. STUDY DESIGN: We used 100% Texas Medicare data (2000 to 2011) to identify patients aged 66 years and older with an initial episode of symptomatic gallstones not requiring emergency hospitalization. At presentation, we calculated each patient's risk of 2-year gallstone-related emergent hospitalization using the previously validated model. Patients were placed into the following risk groups based on model estimates: <30%, 30% to <60%, and ≥ 60%. Within each risk group, we calculated the percent of elective cholecystectomies (≤ 2.5 months from initial episode) performed. RESULTS: In all, 161,568 patients had an episode of symptomatic gallstones. Mean age was 76.5 ± 7.3 years and 59.9% were female. The 2-year risk of gallstone-related hospitalizations increased from 15.9% to 41.5% to 65.2% across risk groups. For the overall cohort, 22.3% in the low-risk group, 20.9% in the moderate-risk group, and 23.2% in the high-risk group underwent elective cholecystectomy in the 2.5 months after the initial symptomatic episode. In patients with no comorbidities, elective cholecystectomy rates decreased from 34.2% in the low-risk group to 26.7% in the high-risk group. Of patients who did not undergo cholecystectomy, only 9.5% were seen by a surgeon in the 2.5 months after the initial episode. CONCLUSIONS: The risk of recurrent acute biliary symptoms requiring hospitalization has no influence, or even a paradoxical negative influence, on the decision to perform elective cholecystectomy after an initial symptomatic episode. Translation of the risk prediction model into clinical practice can better align treatment with risk and improve outcomes in older patients with symptomatic gallstones.

Citation searches are more sensitive than keyword searches to identify studies using specific measurement instruments.

OBJECTIVES: To compare the effectiveness of two search methods in identifying studies that used the Control Preferences Scale (CPS), a health care decision-making instrument commonly used in clinical settings. STUDY DESIGN AND SETTING: We searched the literature using two methods: (1) keyword searching using variations of "Control Preferences Scale" and (2) cited reference searching using two seminal CPS publications. We searched three bibliographic databases [PubMed, Scopus, and Web of Science (WOS)] and one full-text database (Google Scholar). We report precision and sensitivity as measures of effectiveness. RESULTS: Keyword searches in bibliographic databases yielded high average precision (90%) but low average sensitivity (16%). PubMed was the most precise, followed closely by Scopus and WOS. The Google Scholar keyword search had low precision (54%) but provided the highest sensitivity (70%). Cited reference searches in all databases yielded moderate sensitivity (45-54%), but precision ranged from 35% to 75% with Scopus being the most precise. CONCLUSION: Cited reference searches were more sensitive than keyword searches, making it a more comprehensive strategy to identify all studies that use a particular instrument. Keyword searches provide a quick way of finding some but not all relevant articles. Goals, time, and resources should dictate the combination of which methods and databases are used.

Development and pilot testing of an online case-based approach to shared decision making skills training for clinicians.

BACKGROUND: Although research suggests that patients prefer a shared decision making (SDM) experience when making healthcare decisions, clinicians do not routinely implement SDM into their practice and training programs are needed. Using a novel case-based strategy, we developed and pilot tested an online educational program to promote shared decision making (SDM) by primary care clinicians. METHODS: A three-phased approach was used: 1) development of a conceptual model of the SDM process; 2) development of an online teaching case utilizing the Design A Case (DAC) authoring template, a well-tested process used to create peer-reviewed web-based clinical cases across all levels of healthcare training; and 3) pilot testing of the case. Participants were clinician members affiliated with several primary care research networks across the United States who answered an invitation email. The case used prostate cancer screening as the clinical context and was delivered online. Post-intervention ratings of clinicians' general knowledge of SDM, knowledge of specific SDM steps, confidence in and intention to perform SDM steps were also collected online. RESULTS: Seventy-nine clinicians initially volunteered to participate in the study, of which 49 completed the case and provided evaluations. Forty-three clinicians (87.8%) reported the case met all the learning objectives, and 47 (95.9%) indicated the case was relevant for other equipoise decisions. Thirty-one clinicians (63.3%) accessed supplementary information via links provided in the case. After viewing the case, knowledge of SDM was high (over 90% correctly identified the steps in a SDM process). Determining a patient's preferred role in making the decision (62.5% very confident) and exploring a patient's values (65.3% very confident) about the decisions were areas where clinician confidence was lowest. More than 70% of the clinicians intended to perform SDM in the future. CONCLUSIONS: A comprehensive model of the SDM process was used to design a case-based approach to teaching SDM skills to primary care clinicians. The case was favorably rated in this pilot study. Clinician skills training for helping patients clarify their values and for assessing patients' desire for involvement in decision making remain significant challenges and should be a focus of future comparative studies.

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.

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 $200 to $500 for screening. CONCLUSIONS: In our sample, we found that a majority of respondents were engaged in LDCT screening programs. Growth of such programs is expected in the coming years. Finalizing screening guidelines and insurance reimbursement will likely remove barriers that inhibit further growth of LDCT lung cancer screening programs.

Physician behaviors to promote informed decisions for prostate cancer screening: a National Research Network study.

Clinical guidelines for prostate cancer screening (PCS) advise physicians to discuss the potential harms and benefits of screening. However, there is a lack of training programs for informed decision-making (IDM), and it is unknown which IDM behaviors physicians have the most difficulty performing. Identifying difficult behaviors can help tailor training programs. In the context of developing a physician-IDM program for PCS, we aimed to describe physicians' use of nine key IDM behaviors for the PCS discussion and to examine the relation between the behaviors and physician characteristics. A cross-sectional sample of The American Academy of Family Physicians National Research Network completed surveys about their behavior regarding PCS (N = 246; response rate = 58%). The surveys included nine physician key IDM behaviors for PCS and a single-item question describing their general practice style for PCS. The most common IDM behavior was to invite men to ask questions. The two least common reported behaviors concerned patients uncertain about screening (i.e., arrange follow-up and provide additional information for undecided men). Physicians reported difficulty with these two behaviors regardless whether they reported to discuss or not to discuss PCS with patients. Reported use of key IDM behaviors was associated with a general practice style for PCS and being affiliated with a residency-training program. Physician training programs for IDM should include physician skills to address the needs of patients uncertain about screening. Future research should determine if actual behavior is associated with self-reported behavior for the PCS discussion.

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.

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.

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

BACKGROUND: Making 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. METHOD: An 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. RESULTS: The 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. CONCLUSION: A 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.

Is a prostate cancer screening anxiety measure invariant across two different samples of age-appropriate men?

BACKGROUND: In order to explore the influence of anxiety on decision-making processes, valid anxiety measures are needed. We evaluated a prostate cancer screening (PCS) anxiety scale that measures anxiety related to the prostate-specific antigen (PSA) test, the digital rectal examination (DRE), and the decision to undergo PCS (PCS-D) using two samples in different settings. METHODS: We assessed four psychometric properties of the scale using baseline data from a randomized, controlled decision aid trial (n = 301, private clinic; n = 149, public). RESULTS: The 3-factor measure had adequate internal consistency reliability, construct validity, and discriminant validity. Confirmatory factor analyses indicated that the 3-factor model did not have adequate fit. When subscales were considered separately, only the 6-item PCS-D anxiety measure had adequate fit and was invariant across clinics. CONCLUSIONS: Our results support the use of a 6-item PCS-D anxiety measure with age-appropriate men in public and private settings. The development of unique anxiety items relating to the PSA test and DRE is still needed.

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 (α's≥.80) and fair construct validity (most r's≥.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.

Primary care physicians' reported use of pre-screening discussions for prostate cancer screening: a cross-sectional survey.

BACKGROUND: Professional medical organizations recommend individualized patient decision making about prostate cancer screening. Little is known about primary care physicians' use of pre-screening discussions to promote informed decision making for prostate cancer screening. The aim of this study is to explore physicians' use of pre-screening discussions and reasons why physicians would or would not try to persuade patients to be screened if they initially refuse testing. METHODS: Primary care physicians completed a self-administered survey about prostate cancer screening practices for informed decision making. RESULTS: Sixty-six physicians (75.9%) completed the survey, and 63 were used in the analysis. Thirteen physicians (20.6%) reported not using prescreening discussions, 45 (71.4%) reported the use of prescreening discussions, and 3 (4.8%) reported neither ordering the PSA test nor discussing it with patients. Sixty-nine percent of physicians who reported not having discussions indicated they were more likely to screen African American patients for prostate cancer, compared to 50% of physicians who reported the use of discussions (Chi-square(1) = 1.62, p = .20). Similarly, 91% of physicians who reported not having discussions indicated they are more likely to screen patients with a family history of prostate cancer, compared to 46% of those who reported the use of discussion (Chi-square(1) = 13.27, p < .001). Beliefs about the scientific evidence and efficacy of screening, ethical concerns regarding patient autonomy, and concerns about time constraints differed between physicians who would and would not try to persuade a patient to be tested. CONCLUSION: Although guidelines recommend discussing the risks and benefits of prostate cancer screening, physicians report varying practice styles. Future research needs to consider the nature of discussions and the degree to which informed decision making is being achieved in clinical practice.