Carrie A. Levin

Decision-making processes for breast, colorectal, and prostate cancer screening: the DECISIONS survey.

Background Patients should understand the risks and benefits of cancer screening in order to make informed screening decisions. Objectives To evaluate the extent of informed decision making in patient-provider discussions for colorectal (CRC), breast (BrCa), and prostate (PCa) cancer screening. Setting National sample of US adults identified by random-digit dialing. Design Cross-sectional survey conducted between November 2006 and May 2007. Participants English-speaking US adults aged 50 y and older who had discussed cancer screening with a health care provider within the previous 2 y. Measurements Cancer screening survey modules that asked about demographic characteristics, cancer knowledge, the importance of various sources of information, and self-reported cancer screening decision-making processes. Results Overall, 1082 participants completed 1 or more of the 3 cancer modules. Although participants generally considered themselves well informed about screening tests, half or more could not correctly answer even 1 open-ended knowledge question for any given module. Participants consistently overestimated risks for being diagnosed with and dying from each cancer and overestimated the positive predictive values of prostate-specific antigen tests and mammography. Providers were the most highly rated information source, usually initiated screening discussions (64%–84%), and often recommended screening (73%–90%). However, participants reported that providers elicited their screening preferences in only 31% (CRC women) to 57% (PCa) of discussions. Although more than 90% of the discussions addressed the pros of screening, only 19% (BrCa) to 30% (PCa) addressed the cons of screening. Limitations Recall bias is possible because screening process reports were not independently validated. Conclusions Cancer screening decisions reported by patients who discussed screening with their health care providers consistently failed to meet criteria for being informed. Given the high ratings for provider information and frequent recommendations for screening, providers have important opportunities to ensure that informed decision making occurs for cancer screening decisions.

Prostate cancer screening decisions: Results from the National Survey of Medical Decisions (DECISIONS study)

BACKGROUND Guidelines recommend informing patients about the risks and benefits of prostate cancer screening. We evaluated the medical decision-making process for prostate-specific antigen (PSA) testing. METHODS We conducted a telephone survey of a randomly selected national sample of 3010 English-speaking US adults 40 years and older. Included in the survey were 375 men who had either undergone or discussed (with health care providers [HCPs]) PSA testing in the previous 2 years. We asked subjects about sociodemographic characteristics, prostate cancer screening discussion features, prostate cancer knowledge, and the importance of various decision factors and sources of information. RESULTS Overall, 69.9% of subjects discussed screening before making a testing decision, including 14.4% who were not tested. Health care providers most often (64.6%) raised the idea of screening, and 73.4% recommended PSA testing. Health care providers emphasized the pros of testing in 71.4% of discussions but infrequently addressed the cons (32.0%). Although 58.0% of subjects felt well-informed about PSA testing, 47.8% failed to correctly answer any of the 3 knowledge questions. Only 54.8% of subjects reported being asked for their screening preferences. An HCP recommendation (odds ratio, 2.67; 95% confidence interval, 1.08-6.58) was the only discussion characteristic associated with testing. Valuing HCP information was also associated with testing (odds ratio, 1.26; 95% confidence interval, 1.04-1.54). CONCLUSIONS Recommendations and information from HCPs strongly influenced testing decisions. However, most prostate cancer screening decisions did not meet criteria for shared decision making because subjects did not receive balanced discussions of decision consequences, had limited knowledge, and were not routinely asked for their preferences.

Adherence to Antidepressant Treatment Among Privately Insured Patients Diagnosed With Depression

Background:Antidepressants are effective in treatment of depression, but poor adherence to medication is a major obstacle to effective care. Objective:We sought to describe patient and provider level factors associated with treatment adherence. Methods:This was a retrospective, observational study using medical and pharmacy claims from a large health plan, for services provided between January 2003 and January 2005. We studied a total of 4312 subjects ages 18 or older who were continuously enrolled in the health plan with a new episode of major depression and who initiated antidepressant treatment. Treatment adherence was measured by using pharmacy refill records during the first 16 weeks (acute phase) and the 17–33 weeks after initiation of antidepressant therapy (continuation phase). Measures were based on Health Plan Employer Data and Information Set (HEDIS) quality measures for outpatient depression care. Results:Fifty-one percent of patients were adherent through the acute phase; of those, 42% remained adherent in the continuation phase. Receipt of follow-up care from a psychiatrist and higher general pharmacy utilization (excluding psychotropics) were associated with better adherence in both phases. Younger age, comorbid alcohol or other substance abuse, comorbid cardiovascular/metabolic conditions, use of older generation antidepressants, and residence in lower-income neighborhoods were associated with lower acute-phase adherence. Continuation-phase adherence was lower for HMO participants than for others. Conclusion:In an insured population, many patients fall short of adherence to guideline recommended therapy for depression. Information from existing administrative data can be used to predict patients at highest risk of nonadherence, such as those with substance abuse, and to target interventions.

Establishing the effectiveness of patient decision aids: key constructs and measurement instruments

BackgroundEstablishing the effectiveness of patient decision aids (PtDA) requires evidence that PtDAs improve the quality of the decision-making process and the quality of the choice made, or decision quality. The aim of this paper is to review the theoretical and empirical evidence for PtDA effectiveness and discuss emerging practical and research issues in the measurement of effectiveness.MethodsThis updated overview incorporates: a) an examination of the instruments used to measure five key decision-making process constructs (i.e., recognize decision, feel informed about options and outcomes, feel clear about goals and preferences, discuss goals and preferences with health care provider, and be involved in decisions) and decision quality constructs (i.e., knowledge, realistic expectations, values-choice agreement) within the 86 trials in the Cochrane review; and b) a summary of the 2011 Cochrane Collaboration’s review of PtDAs for these key constructs. Data on the constructs and instruments used were extracted independently by two authors from the 86 trials and any disagreements were resolved by discussion, with adjudication by a third party where required.ResultsThe 86 studies provide considerable evidence that PtDAs improve the decision-making process and decision quality. A majority of the studies (76/86; 88%) measured at least one of the key decision-making process or decision quality constructs. Seventeen different measurement instruments were used to measure decision-making process constructs, but no single instrument covered all five constructs. The Decisional Conflict Scale was most commonly used (n = 47), followed by the Control Preference Scale (n = 9). Many studies reported one or more constructs of decision quality, including knowledge (n = 59), realistic expectation of risks and benefits (n = 21), and values-choice agreement (n = 13). There was considerable variability in how values-choice agreement was defined and determined. No study reported on all key decision-making process and decision quality constructs.ConclusionsEvidence of PtDA effectiveness in improving the quality of the decision-making process and decision quality is strong and growing. There is not, however, consensus or standardization of measurement for either the decision-making process or decision quality. Additional work is needed to develop and evaluate measurement instruments and further explore theoretical issues to advance future research on PtDA effectiveness.

The DECISIONS Study: A Nationwide Survey of United States Adults Regarding 9 Common Medical Decisions

Background Patient involvement is required before patients’ preferences can be reflected in the medical care they receive. Furthermore, patients are a vital link between physicians’ assessments of patients’ needs and actual implementation of appropriate care. Yet no study has specifically examined how and when a representative sample of patients considered, discussed, and made medical decisions. Objective To identify decision prevalence and decision-making processes regarding 1) initiation of prescription medications for hypertension, hypercholesterolemia, or depression; 2) screening tests for colorectal, breast, or prostate cancer; and 3) surgeries for knee or hip replacement, cataracts, or lower back pain. Design Computer-assisted telephone interview survey. Setting Nationally representative sample of US adults in households with telephones. Participants 3010 English-speaking adults age 40 and older identified using a stratified random sample of telephone numbers. Measurements Estimated prevalence of medical decisions, defined as the patient having initiated medications, been screened, or had surgery within the past 2 years or having discussed these actions with a health care provider during the same interval, as well as decision-specific data regarding patient knowledge, attitudes and patient-provider interactions. Results 82.2% of the target population reported making at least 1 medical decision in the preceding 2 years. The proportion of decisions resulting in patient action varied dramatically both across decision type (medications [61 %] v. screening [83%] v. surgery [44%]; P < 0.001), and within each category (e.g., blood pressure medications [76%] v. cholesterol medications [55%] vs. depression medications [48%]; P < 0.001). Respondents reported making more decisions if they had a primary care provider or poorer health status and fewer decisions if they had lower education, were male, or were under age 50. Limitations Retrospective self-reports may incorporate recall biases. Conclusions Medical decisions with significant life-saving, quality of life, and cost implications are a pervasive part of life for most US adults. The DECISIONS dataset provides a rich research environment for exploring factors influencing when and how patients make common medical decisions.

Use of the Internet and Ratings of Information Sources for Medical Decisions: Results from the DECISIONS Survey:

Background The rise in Internet use for seeking health information raises questions about the role the Internet may play in how patients make medical decisions. Objective To examine Internet use and perceived importance of different sources of information by patients making 9 specific medical decisions covering prescription medication initiation, cancer screening, and elective surgery. Setting National sample of US adults identified by random-digit dialing. Design Cross-sectional survey conducted between November 2006 and May 2007. Participants The final sample comprised 2575 English-speaking US adults aged 40 y and older who had either undergone 1 of 9 medical procedures or tests or talked with a health care provider about doing so during the previous 2 y. Measurements Participants indicated if they or other family members used the Internet to seek information related to each of the specific medical decisions and rated how important the health care provider, the Internet (if used), family and friends, and the media (newspapers, magazines, and television) were in providing information to help make the medical decision. Results Use of the Internet for information related to specific decisions among adults 40 y and older was generally low (28%) but varied across decisions, from 17% for breast cancer screening to 48% for hip/knee replacement. Internet use was higher at younger ages, rising from 14% among those aged 70 y and older to 38% for those aged 40 to 49 y. Internet users consistently rated health care providers as the most influential source of information for medical decisions, followed by the Internet, family and friends, and media. Limitations Telephone surveys are limited by coverage and nonresponse. The authors excluded health-related Internet use not associated with the 9 target decisions. Conclusions A minority of patients reported using the Internet to make specific common medical decisions, but use varied widely by type of decision. Perhaps reflecting perceived risk and uncertainty, use was lowest for screening decisions and highest for surgical decisions.

Deficits and Variations in Patients’ Experience with Making 9 Common Medical Decisions: The DECISIONS Survey

Background Although many researchers have examined patient involvement and patient-provider interactions within specific clinical environments, no nationally representative data exist to characterize patient perceptions of decision making and patient-provider communications across multiple common medical decisions. Objective To identify deficits and variations in the patient experience of making common medical decisions about initiation of prescription medications for hypertension, hypercholesterolemia, or depression; screening tests for colorectal, breast, or prostate cancer; and surgeries for knee or hip replacement, cataracts, or lower back pain, as well as to identify factors associated with patient confidence in the decisions. Setting National sample of US adults identified by random-digit dialing. Design Cross-sectional survey conducted from November 2006 to May 2007. Participants Included 2473 English-speaking adults age 40 and older who reported undertaking 1 or more of the above 9 medical actions or discussing doing so with a health care provider within the past 2 years. Measurements Patients reported who initiated discussions and made the final decisions, how much discussion of pros and cons occurred, whether they were asked about their preferences, and their confidence that the decision “was the right one.” Results The proportion of patient-driven decisions varied significantly across decisions (range: blood pressure: 16% to knee/hip replacement: 48%). Most patients (78%–85%) reported that providers made a recommendation, and such recommendations generally favored taking medical action. Fewer patients reported that providers asked them about their preferences (range: colon cancer screening: 34% to knee/hip replacement: 80%) or discussed reasons not to take action (range: breast cancer screening: 20% to lower back surgery: 80%). Decision confidence was higher among patients who reported primarily making the decision themselves (odds ratio [OR] = 14.6, P < 0.001) or having been asked for their preference (OR = 1.32, P < 0.01) and was lower among patients whose patient provider discussions included cons (OR = 0.74, P = 0.008). Limitations Recall biases may affect patients’ memories of their decision-making processes. Conclusions Decisions participants reported wide variations in the proportion of discussions that included a conversation about reasons not to take action or a conversation about patients’ preferences about what they would like to do. These factors appear directly related to patients’ confidence that the decision was “right.”

Clarifying Values: An updated review

BackgroundConsensus guidelines have recommended that decision aids include a process for helping patients clarify their values. We sought to examine the theoretical and empirical evidence related to the use of values clarification methods in patient decision aids.MethodsBuilding on the International Patient Decision Aid Standards (IPDAS) Collaboration’s 2005 review of values clarification methods in decision aids, we convened a multi-disciplinary expert group to examine key definitions, decision-making process theories, and empirical evidence about the effects of values clarification methods in decision aids. To summarize the current state of theory and evidence about the role of values clarification methods in decision aids, we undertook a process of evidence review and summary.ResultsValues clarification methods (VCMs) are best defined as methods to help patients think about the desirability of options or attributes of options within a specific decision context, in order to identify which option he/she prefers. Several decision making process theories were identified that can inform the design of values clarification methods, but no single “best” practice for how such methods should be constructed was determined. Our evidence review found that existing VCMs were used for a variety of different decisions, rarely referenced underlying theory for their design, but generally were well described in regard to their development process. Listing the pros and cons of a decision was the most common method used. The 13 trials that compared decision support with or without VCMs reached mixed results: some found that VCMs improved some decision-making processes, while others found no effect.ConclusionsValues clarification methods may improve decision-making processes and potentially more distal outcomes. However, the small number of evaluations of VCMs and, where evaluations exist, the heterogeneity in outcome measures makes it difficult to determine their overall effectiveness or the specific characteristics that increase effectiveness.

Patients' knowledge about 9 common health conditions: the DECISIONS survey.

Background To make informed decisions, patients must have adequate knowledge of key decision-relevant facts. Objective To determine adults’ knowledge about information relevant to common types of medication, screening, or surgery decisions they recently made. Setting National sample of US adults identified by random-digit dialing. Design Cross-sectional survey conducted between November 2006 and May 2007. Participants A total of 2575 English-speaking adults aged 40 y or older who reported having discussed the following medical decisions with a health care provider within the previous 2 y: prescription medications for hypertension, hypercholesterolemia, or depression; screening tests for colorectal, breast, or prostate cancer; or surgeries for knee/hip replacement, cataracts, or lower back pain. Measurements Participants answered knowledge questions and rated the importance of their health care provider, family/friends, and the media as sources of information. Results Accuracy rates varied widely across questions and decision contexts. For example, patients considering cataract surgery were more likely to correctly estimate recovery time than those patients considering lower back pain or knee/hip replacement (78% v. 29% and 39%, P < 0.001). Similarly, participants were more knowledgeable of facts about colorectal cancer screening than those who were asked about breast or prostate cancer. Finally, respondents were consistently more knowledgeable on comparable questions about blood pressure medication than cholesterol medication or antidepressants. The impact of demographic characteristics and sources of information also varied substantially. For example, blacks had lower knowledge than whites about cancer screening decisions (odds ratio [OR] = 0.57; 95% confidence interval [CI] = 0.43, 0.75; P = 0.001) and medication (OR = 0.77; 95% CI = 0.60, 0.97; P = 0.03) even after we controlled for other demographic factors. The same was not true for surgical decisions. Limitations The questions did not measure all knowledge relevant to informed decision making, were subject to recall biases, and may have assessed numeracy more than knowledge. Conclusions Patient knowledge of key facts relevant to recently made medical decisions is often poor and varies systematically by decision type and patient characteristics. Improving patient knowledge about risks, benefits, and characteristics of medical procedures is essential to support informed decision making.

How does feeling informed relate to being informed? The DECISIONS survey.

Background An important part of delivering high-quality, patient-centered care is making sure patients are informed about decisions regarding their health care. The objective was to examine whether patients’ perceptions about how informed they were about common medical decisions are related to their ability to answer various knowledge questions. Methods A cross-sectional survey was conducted November 2006 to May 2007 of a national sample of US adults identified by random-digit dialing. Participants were 2575 English-speaking US adults aged 40 and older who had made 1 of 9 medication, cancer screening, or elective surgery decisions within the previous 2 years. Participants rated how informed they felt on a scale of 0 (not at all informed) to 10 (extremely well-informed), answered decision-specific knowledge questions, and completed standard demographic questions. Results Overall, 36% felt extremely well informed (10), 30% felt well informed (8–9), and 33% felt not at all to somewhat informed (0–7). Multivariate logistic regression analyses showed no overall relationship between knowledge scores and perceptions of being extremely well informed (odds ratio [OR] = 0.94, 95% confidence interval [CI] 0.63–1.42, P = 0.78). Three patterns emerged for decision types: a negative relationship for cancer screening decisions (OR = 0.58, CI 0.33–1.02, P = 0.06), no relationship for medication decisions (OR = 0.99, CI 0.54–1.83, P = 0.98), and a positive relationship for surgery decisions (OR = 3.07, 95% CI 0.90–10.54, P = 0.07). Trust in the doctor was associated with feeling extremely well-informed for all 3 types of decisions. Lower education and lower income were also associated with feeling extremely well informed for medication and screening decisions. Retrospective survey data are subject to recall bias, and participants may have had different perspectives or more factual knowledge closer to the time of the decision. Conclusions Patients facing common medical decisions are not able to accurately assess how well informed they are. Clinicians need to be proactive in providing adequate information to patients and testing patients’ understanding to ensure informed decisions.