Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders.

Research increasingly means that patients, caregivers, health professionals, other stakeholders, and academic investigators work in partnership. This requires effective collaboration rooted in mutual respect, involvement of all participants, and good communication. Having conducted such partnered research over multiple projects, and having recently completed a project together funded by the Patient-Centered Outcomes Research Institute, we collaboratively developed a list of 12 lessons we have learned about how to ensure effective research partnerships. To foster a culture of mutual respect, hold early in-person meetings, with introductions focused on motivation, offer appropriate orientation for everyone, and maintain awareness of individual and project goals. To actively involve all team members, it is important to ensure sufficient funding for everyone's participation, to ask for and recognize diverse contributions, and to seek the input of quiet members. To facilitate good communication, teams should carefully consider labels, avoid jargon and acronyms, judiciously use homogeneous and heterogeneous subgroups, and keep progress visible. In offering pragmatic, actionable lessons we have learned through our separate and shared experiences, we hope to help foster more patient-centered research via productive and enjoyable research collaborations.

Involving members of vulnerable populations in the development of patient decision aids: a mixed methods sequential explanatory study.

BACKGROUND: Patient decision aids aim to present evidence relevant to a health decision in understandable ways to support patients through the process of making evidence-informed, values-congruent health decisions. It is recommended that, when developing these tools, teams involve people who may ultimately use them. However, there is little empirical evidence about how best to undertake this involvement, particularly for specific populations of users such as vulnerable populations. METHODS: To describe and compare the development practices of research teams that did and did not specifically involve members of vulnerable populations in the development of patient decision aids, we conducted a secondary analysis of data from a systematic review about the development processes of patient decision aids. Then, to further explain our quantitative results, we conducted semi-structured telephone interviews with 10 teams: 6 that had specifically involved members of vulnerable populations and 4 that had not. Two independent analysts thematically coded transcribed interviews. RESULTS: Out of a total of 187 decision aid development projects, 30 (16%) specifically involved members of vulnerable populations. The specific involvement of members of vulnerable populations in the development process was associated with conducting informal needs assessment activities (73% vs. 40%, OR 2.96, 95% CI 1.18-7.99, P = .02) and recruiting participants through community-based organizations (40% vs. 11%, OR 3.48, 95% CI 1.23-9.83, P = .02). In interviews, all developers highlighted the importance, value and challenges of involving potential users. Interviews with developers whose projects had involved members of vulnerable populations suggested that informal needs assessment activities served to center the decision aid around users' needs, to better avoid stigma, and to ensure that the topic truly matters to the community. Partnering with community-based organizations may facilitate relationships of trust and may also provide a non-threatening and accessible location for research activities. CONCLUSIONS: There are a small number of key differences in the development processes for patient decision aids in which members of vulnerable populations were or were not specifically involved. Some of these practices may require additional time or resources. To address health inequities, researchers, communities and funders may need to increase awareness of these approaches and plan accordingly.

The role of perceived benefits and costs in patients' medical decisions.

BACKGROUND: Many decisions can be understood in terms of actors' valuations of benefits and costs. The article investigates whether this is also true of patient medical decision making. It aims to investigate (i) the importance patients attach to various reasons for and against nine medical decisions; (ii) how well the importance attached to benefits and costs predicts action or inaction; and (iii) how such valuations are related to decision confidence. METHODS: In a national random digit dial telephone survey of U.S. adults, patients rated the importance of various reasons for and against medical decisions they had made or talked to a health-care provider about during the past 2 years. Participants were 2575 English-speaking adults age 40 and older. Data were analysed by means of logistic regressions predicting action/inaction and linear regressions predicting confidence. RESULTS: Aggregating individual reasons into those that may be regarded as benefits and those that may be regarded as costs, and weighting them by their importance to the patient, shows the expected relationship to action. Perceived benefits and costs are also significantly related to the confidence patients report about their decision. CONCLUSION: The factors patients say are important in their medical decisions reflect a subjective weighing of benefits and costs and predict action/inaction although they do not necessarily indicate that patients are well informed. The greater the difference between the importance attached to benefits and costs, the greater patients' confidence in their decision.

Development and evaluation of a new survey instrument to measure the quality of colorectal cancer screening decisions.

BACKGROUND: Guidelines for colorectal cancer screening recommend that patients be informed about options and be able to select preferred method of screening; however, there are no existing measures available to assess whether this happens. METHODS: Colorectal Cancer Screening Decision Quality Instrument (CRC-DQI) includes knowledge items and patients' goals and concerns. Items were generated through literature review and qualitative work with patients and providers. Hypotheses relating to the acceptability, feasibility, discriminant validity and retest reliability of the survey were examined using data from three studies: (1) 2X2 randomized study of participants recruited online, (2) cross-sectional sample of patients recruited in community health clinics, and (3) cross-sectional sample of providers recruited from American Medical Association Master file. RESULTS: 338 participants were recruited online, 94 participants were recruited from community health centers, and 115 physicians were recruited. The CRC-DQI was feasible and acceptable with low missing data and high response rates for both online and paper-based administrations. The knowledge score was able to discriminate between those who had seen a decision aid or not (84% vs. 64%, p < 0.001) and between providers, online patients and clinic patients (89% vs. 74% vs. 41%, p < 0.001 for all comparisons). The knowledge score and most of the goals had adequate retest reliability. About half of the participants received a test that matched their goals (47% and 51% in online and clinic samples respectively). Many respondents who had never been screened had goals that indicated a preference for colonoscopy. A minority of respondents in the online (21%) and in clinic (2%) samples were both well informed and received a test that matched their goals. CONCLUSIONS: The CRC-DQI demonstrated good psychometric properties in diverse samples, and across different modes of administration. Few respondents made high quality decisions about colon cancer screening.

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

BACKGROUND: Establishing 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. METHODS: This 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. RESULTS: The 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. CONCLUSIONS: Evidence 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.

Clarifying values: an updated review.

BACKGROUND: Consensus 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. METHODS: Building 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. RESULTS: Values 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. CONCLUSIONS: Values 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.

Measuring decision quality: psychometric evaluation of a new instrument for breast cancer surgery.

BACKGROUND: The purpose of this paper is to examine the acceptability, feasibility, reliability and validity of a new decision quality instrument that assesses the extent to which patients are informed and receive treatments that match their goals. METHODS: Cross-sectional mail survey of recent breast cancer survivors, providers and healthy controls and a retest survey of survivors. The decision quality instrument includes knowledge questions and a set of goals, and results in two scores: a breast cancer surgery knowledge score and a concordance score, which reflects the percentage of patients who received treatments that match their goals. Hypotheses related to acceptability, feasibility, discriminant validity, content validity, predictive validity and retest reliability of the survey instrument were examined. RESULTS: We had responses from 440 eligible patients, 88 providers and 35 healthy controls. The decision quality instrument was feasible to implement in this study, with low missing data. The knowledge score had good retest reliability (intraclass correlation coefficient=0.70) and discriminated between providers and patients (mean difference 35%, p<0.001). The majority of providers felt that the knowledge items covered content that was essential for the decision. Five of the 6 treatment goals met targets for content validity. The five goals had moderate to strong retest reliability (0.64 to 0.87). The concordance score was 89%, indicating that a majority had treatments concordant with that predicted by their goals. Patients who had concordant treatment had similar levels of confidence and regret as those who did not. CONCLUSIONS: The decision quality instrument met the criteria of feasibility, reliability, discriminant and content validity in this sample. Additional research to examine performance of the instrument in prospective studies and more diverse populations is needed.

Decision quality instrument for treatment of hip and knee osteoarthritis: a psychometric evaluation.

BACKGROUND: A high quality decision requires that patients who meet clinical criteria for surgery are informed about the options (including non-surgical alternatives) and receive treatments that match their goals. The aim of this study was to evaluate the psychometric properties and clinical sensibility of a patient self report instrument, to measure the quality of decisions about total joint replacement for knee or hip osteoarthritis. METHODS: The performance of the Hip/Knee Osteoarthritis Decision Quality Instrument (HK-DQI) was evaluated in two samples: (1) a cross-sectional mail survey with 489 patients and 77 providers (study 1); and (2) a randomized controlled trial of a patient decision aid with 138 osteoarthritis patients considering total joint replacement (study 2). The HK-DQI results in two scores. Knowledge items are summed to create a total knowledge score, and a set of goals and concerns are used in a logistic regression model to develop a concordance score. The concordance score measures the proportion of patients whose treatment matched their goals. Hypotheses related to acceptability, feasibility, reliability and validity of the knowledge and concordance scores were examined. RESULTS: In study 1, the HK-DQI was completed by 382 patients (79%) and 45 providers (58%), and in study 2 by 127 patients (92%), with low rates of missing data. The DQI-knowledge score was reproducible (ICC = 0.81) and demonstrated discriminant validity (68% decision aid vs. 54% control, and 78% providers vs. 61% patients) and content validity. The concordance score demonstrated predictive validity, as patients whose treatments were concordant with their goals had more confidence and less regret with their decision compared to those who did not. CONCLUSIONS: The HK-DQI is feasible and acceptable to patients. It can be used to assess whether patients with osteoarthritis are making informed decisions about surgery that are concordant with their goals.

Plans to stop cancer screening tests among adults who recently considered screening.

OBJECTIVE: We sought to estimate what proportion of adults plan to stop cancer screening tests among adults who recently considered screening and to explore factors associated with these screening plans. DESIGN: Telephone Survey PARTICIPANTS: A total of 1,237 participants aged 50 and older who reported having made one or more cancer screening decisions in the past 2 years completed 1,454 cancer screening modules for breast, prostate and colorectal screening. MAIN RESULTS: Of all module respondents, 9.8% reported plans to stop screening, 12.6% for breast, 6.0 % for prostate and 9.5% for colon cancer. We found no statistically significant differences in plans to stop for those ages >or=70 (8.2%) compared to those ages 50 to 69 (10.2%) (p = 0.14.) Black respondents were less likely to report plans to stop than white respondents (OR = 0.32, 95% CI 0.12, 0.87). Participation in the decision-making process was associated with plans to stop screening; those who reported they made the final decision about screening (OR 5.9, 95% CI 1.4, 24.7) or made the decision with the health care provider (OR 4.1, 95% CI 1.0, 16.8) were more likely to have plans to stop screening compared to respondents who reported that their health care provider made the final decision. CONCLUSIONS: Plans to stop screening were uncommon among participants who had recently faced a screening decision. Given the recent US Preventive Services Task Force recommendations limiting routine cancer screening for older adults, additional efforts to educate adults about the potential risks and benefits of screening may be warranted.

Development of instruments to measure the quality of breast cancer treatment decisions.

BACKGROUND: Women with early-stage breast cancer face a multitude of decisions. The quality of a decision can be measured by the extent to which the treatment reflects what is most important to an informed patient. Reliable and valid measures of patients' knowledge and their goals and concerns related to breast cancer treatments are needed to assess the decision quality. OBJECTIVE: To identify a set of key facts and goals relevant to each of three breast cancer treatment decisions (surgery, reconstruction and adjuvant chemotherapy and hormone therapy) and to evaluate the validity of the methods used to identify them. METHODS: Candidate facts and goals were chosen based on evidence review and qualitative studies with breast cancer patients and providers. Cross-sectional surveys of patients and providers were conducted for each decision. The accuracy, importance and completeness of the items were examined. RESULTS: Thirty-eight facts (11-14 per decision) and 27 goals (8-10 per decision) were identified. An average of 17 patients and 21 providers responded to each survey. The sets of facts were accurate and complete for all three decisions. The sets of goals and concerns were important for surgery and reconstruction, but not chemotherapy/hormone therapy. Patients and providers disagreed about the relative importance of several key facts and goals. CONCLUSIONS: Overall, breast cancer patients and providers found the sets of facts and goals accurate, important and complete for three treatment decisions. Because patients' and providers' perspectives are different, it is vital that instrument development should include items reflecting both views.

Developing instruments to measure the quality of decisions: early results for a set of symptom-driven decisions.

OBJECTIVE: To identify a set of critical facts and key goals and concerns for five common medical conditions, benign prostate disease, hip and knee osteoarthritis, herniated disc and spinal stenosis and examine the validity of the method for identifying these items. METHODS: Investigators identified facts and goals through literature reviews and qualitative work with patients and providers. A cross-sectional survey of patients and providers was conducted to examine the accuracy, importance and completeness of the identified items. RESULTS: 42 facts (6-16 per condition) and 31 goals and concerns (4-13 per condition) were identified. 182 responses were obtained from patients (76.5% response rate) and 113 responses from providers (78% response rate). Overall, the facts were accurate, important and complete across all conditions. For one condition (hip osteoarthritis), the goals did not meet the criteria for completeness. There was more disagreement between patients and providers around the ranking of goals than of facts. CONCLUSIONS: Overall, respondents found the identified facts and goals accurate, important and complete. Significant differences between patients' and providers' rankings highlight the importance of including both perspectives. PRACTICE IMPLICATIONS: Instruments to measure whether or not patients are informed and the extent to which treatments reflect patients' goals must balance patients' and providers' perspectives when selecting items to include.

Standards for UNiversal reporting of patient Decision Aid Evaluation studies: the development of SUNDAE Checklist.

BACKGROUND: Patient decision aids (PDAs) are evidence-based tools designed to help patients make specific and deliberated choices among healthcare options. The International Patient Decision Aid Standards (IPDAS) Collaboration review papers and Cochrane systematic review of PDAs have found significant gaps in the reporting of evaluations of PDAs, including poor or limited reporting of PDA content, development methods and delivery. This study sought to develop and reach consensus on reporting guidelines to improve the quality of publications evaluating PDAs. METHODS: An international workgroup, consisting of members from IPDAS Collaboration, followed established methods to develop reporting guidelines for PDA evaluation studies. This paper describes the results from three completed phases: (1) planning, (2) drafting and (3) consensus, which included a modified, two-stage, online international Delphi process. The work was conducted over 2 years with bimonthly conference calls and three in-person meetings. The workgroup used input from these phases to produce a final set of recommended items in the form of a checklist. RESULTS: The SUNDAE Checklist (Standards for UNiversal reporting of patient Decision Aid Evaluations) includes 26 items recommended for studies reporting evaluations of PDAs. In the two-stage Delphi process, 117/143 (82%) experts from 14 countries completed round 1 and 96/117 (82%) completed round 2. Respondents reached a high level of consensus on the importance of the items and indicated strong willingness to use the items when reporting PDA studies. CONCLUSION: The SUNDAE Checklist will help ensure that reports of PDA evaluation studies are understandable, transparent and of high quality. A separate Explanation and Elaboration publication provides additional details to support use of the checklist.

Knowledge and values for cancer screening decisions: Results from a national survey.

BACKGROUND: Guidelines recommend shared decision making (SDM) for cancer screening decisions. SDM requires providers to ensure that patients are informed about screening issues and to support decisions that are concordant with patient values. We evaluated decision-quality factors for breast, colorectal, and prostate cancer screening decisions. METHODS: We conducted a national, population-based Internet survey of adults aged 40+ to characterize perceptions about about cancer screening, the importance of information sources, cancer screening knowledge, values and preferences for screening, and the most influential drivers of decisions. RESULTS: Among 1452 participants who completed the survey, the mean age was 60, and 94% were insured. Most participants reported feeling well informed about cancer screening, though only 21% reported feeling extremely well informed. Most participants correctly answered about 50% of the knowledge questions, with the majority markedly overestimating lifetime risk of cancer diagnoses and mortality. Participants rated health care providers as the most important source of information. CONCLUSION: Although respondents considered themselves well informed about cancer they performed poorly on knowledge questions. This discordance suggests the potential for poor-quality decision making. PRACTICE IMPLICATIONS: To improve the quality of decision making, providers need training to utilize decision support tools and time to carry out SDM.

Decisions about medication use and cancer screening across age groups in the United States.

OBJECTIVE: To describe decision process and quality for common cancer screening and medication decisions by age group. METHODS: We included 2941 respondents to a national Internet survey who made at least one decision about colorectal, breast, and prostate cancer screening, blood pressure or cholesterol medications. Respondents were queried about decision processes. RESULTS: Across the five decisions considered, decision process scores were similar (and generally low) across age groups for medication and cancer screening, indicating that all groups had poor involvement in medical decision making. Overall knowledge scores were low across age groups, with elderly (75+) having slightly higher knowledge about medications vs. younger respondents. Elderly respondents reported similar goals and concerns when making decisions, though placed greater importance of having peace of mind from a normal result for cancer screening vs. younger respondents. CONCLUSION: Across age groups, respondents reported poor decision processes about common medications and cancer screening, despite little evidence of benefit for some interventions (cancer screening, cholesterol lowering medicines in low risk elderly) and possibility of harm in the elderly. PRACTICE IMPLICATIONS: Particular care should be taken to help patients understand both benefit and risk of screening tests and routine medications.

Lack of shared decision making in cancer screening discussions: results from a national survey.

BACKGROUND: Clinicians are encouraged to support patients in achieving shared decision making (SDM) for cancer screening. PURPOSE: To describe decision making processes and outcomes for cancer screening discussions. METHODS: A 2011 national Internet survey of adults aged ≥50 years who made cancer screening decisions (breast, BrCa; colorectal, CRC; prostate, PCa) within the previous 2 years was conducted. Participants were asked about their perceived cancer risk; how informed they felt about cancer tests; whether their healthcare provider addressed pros/cons of testing, presented the option of no testing, and elicited their input; whether they were tested; and their confidence in the screening decision. Data were analyzed in 2013-2014 with descriptive statistics and logistic regression. RESULTS: Overall, 1,134 participants (477 men, 657 women) aged ≥50 years made cancer screening decisions, and 1,098 (354, BrCa; 598, CRC; 146, PCa) decisions were discussed with a healthcare provider. Most discussions (51%-67%) addressed pros of screening some or a lot, but few (7%-14%) similarly addressed cons. For all cancer screening decisions, providers usually (63%-71%) explained that testing was optional, but less often asked women (43%-57%) than men (70%-71%) whether they wanted testing. Only 27%-38% of participants reported SDM, 69%-93% underwent screening, and 55%-76% would definitely make the same decision again. Perceived high/average cancer risk and feeling highly informed were associated with confidence in the screening decision. CONCLUSIONS: Discussions often failed to provide balanced information and meet SDM criteria. Supporting SDM could potentially improve the quality of cancer screening decisions.

Psychometric evaluation of a decision quality instrument for treatment of lumbar herniated disc.

STUDY DESIGN: Retrospective and prospective patient surveys and a physician survey using a sample from American Medical Association master file. OBJECTIVE: To evaluate the performance of a new instrument designed to measure the quality of decisions about treatment of herniated disc. SUMMARY OF BACKGROUND DATA: There is growing consensus on the importance of engaging and informing patients to improve the quality of significant medical decisions, yet there are no instruments currently available to measure decision quality. METHODS: The herniated disc-decision quality instrument (HD-DQI) was developed with input from clinical experts, survey research experts, and patients. The HD-DQI produces 2 scores each scaled to 0% to 100%, with higher scores indicating better quality: (1) a total knowledge score and (2) a concordance score (indicating the percentage of patients who received treatments that matched their goals). We examined hypotheses relating to the acceptability, feasibility, validity, and reliability of the instrument, using data from 3 samples. RESULTS: The HD-DQI survey was feasible to implement and acceptable to patients, with good response rates and low missing data. The knowledge score discriminated between patients who had seen a decision aid or no decision aid (55% vs. 38%, P < 0.001) and between providers and patients (73% vs. 46%, P < 0.001). The knowledge score also had good retest reliability (intraclass correlation coefficient = 0.85). Most patients (78%) received treatments that matched their goals. Patients who received treatments that matched their goals were less likely to regret the decision than those who did not (13% vs. 39%, P = 0.004). CONCLUSION: The HD-DQI met several criteria for high-quality patient-reported survey instruments. It can be used to determine the quality of decisions for treatment of herniated disc. More work is needed to examine acceptability for use as part of routine patient care.

Informing and involving patients to improve the quality of medical decisions.

Good-quality care requires that procedures, treatments, and tests be not only medically appropriate, but also desired by informed patients. Current evidence shows that most medical decisions are made by physicians with little input from patients. This article describes issues surrounding informed patient decision making and the steps necessary to improve the way decisions are made. Creating incentives for providers and health care organizations to inform patients and incorporate patients' goals into decisions is critical. Patient surveys are needed to monitor the quality of decision making. Health information technology can help by collecting information from patients about their symptoms, how well they understand their options, and what is important to them, and sharing that information with providers. We review public and private developments that could facilitate the development of tools and methods to improve patient-centered care.

Shared decision making in the United States: policy and implementation activity on multiple fronts.

Shared decision making in the United States has become an important element in health policy debates. The recently passed federal health care reform legislation includes several key provisions related to shared decision making (SDM) and patient decision support. Several states have passed or are considering legislation that incorporates SDM as a key component of improved health care provision. Research on SDM is funded by a range of public and private organizations. Non-profit, for-profit, academic and government organizations are developing decision support interventions for numerous conditions. Some interventions are publicly available; others are distributed to patients through health insurance and healthcare providers. A significant number of clinical implementation projects are underway to test and evaluate different ways of incorporating SDM and patient decision support into routine clinical care. Numerous professional organizations are advocating for SDM and social networking efforts are increasing their advocacy as well. Policy makers are intrigued by the potential of SDM to improve health care provision and potentially lower costs. The role of shared decision making in policy and practice will be part of the larger health care reform debate.

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.

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.