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Objectives: Our objective was to elicit clinicians' and parents' perspectives about decision-making related to hospitalization for children with bronchiolitis and the use of shared decision-making (SDM) to guide these decisions., Methods: We conducted individual, semistructured interviews with purposively sampled clinicians (pediatric emergency medicine physicians and nurses) at 2 children's hospitals and parents of children age <2 years with bronchiolitis evaluated in the emergency department at 1 hospital. Interviews elicited clinicians' and parents' perspectives on decision-making and SDM for bronchiolitis. We conducted an inductive analysis following the principles of grounded theory until data saturation was reached for both groups., Results: We interviewed 24 clinicians (17 physicians, 7 nurses) and 20 parents. Clinicians identified factors in 3 domains that contribute to hospitalization decision-making for children with bronchiolitis: demographics, clinical factors, and social-emotional factors. Although many clinicians supported using SDM for hospitalization decisions, most reported using a clinician-guided decision-making process in practice. Clinicians also identified several barriers to SDM, including the unpredictable course of bronchiolitis, perceptions of parents' preferences for engaging in SDM, and parents' emotions, health literacy, preferred language, and comfort with discharge. Parents wanted the opportunity to express their opinions during decision-making about hospitalization, although they often felt comfortable with the clinician's decision when adequately informed., Conclusions: Although clinicians and parents of children with bronchiolitis are supportive of SDM, most hospitalization decision-making is clinician guided. Future investigation should evaluate how to address barriers and implement SDM in practice, including training clinicians in this SDM approach., (Copyright © 2022 by the American Academy of Pediatrics.)

Aim: Research regarding decisions patients make about total knee arthroplasty, apart from having the procedure or not, are limited. Understanding patient decision making and related information needs is essential for shared decision making. Methods: Focus groups with an online community-based sample identified decisions about total knee arthroplasty beyond the decision to have the surgery itself. An online survey was used to determine relative importance of five major decisions and evaluate related information available. Results: Patients did not feel they have enough information to make important decisions of surgeon, device type, surgical approach, facility, or timing, for their total knee arthroplasty. Conclusion: Although further research is needed to generalize these findings, physicians should consider these questions during shared decision making with patients considering total knee arthroplasty.

Background: Treatment decision-making regarding immunosuppressive therapy is challenging for individuals with lupus. We assessed the effectiveness of a decision aid for immunosuppressive therapy in lupus nephritis., Methods and Findings: In a United States multicenter, open-label, randomized controlled trial (RCT), adult women with lupus nephritis, mostly from racial/ethnic minority backgrounds with low socioeconomic status (SES), seen in in- or outpatient settings, were randomized to an individualized, culturally tailored, computerized decision aid versus American College of Rheumatology (ACR) lupus pamphlet (1:1 ratio), using computer-generated randomization. We hypothesized that the co-primary outcomes of decisional conflict and informed choice regarding immunosuppressive medications would improve more in the decision aid group. Of 301 randomized women, 298 were analyzed; 47% were African-American, 26% Hispanic, and 15% white. Mean age (standard deviation [SD]) was 37 (12) years, 57% had annual income of <$40,000, and 36% had a high school education or less. Compared with the provision of the ACR lupus pamphlet (n = 147), participants randomized to the decision aid (n = 151) had (1) a clinically meaningful and statistically significant reduction in decisional conflict, 21.8 (standard error [SE], 2.5) versus 12.7 (SE, 2.0; p = 0.005) and (2) no difference in informed choice in the main analysis, 41% versus 31% (p = 0.08), but clinically meaningful and statistically significant difference in sensitivity analysis (net values for immunosuppressives positive [in favor] versus negative [against]), 50% versus 35% (p = 0.006). Unresolved decisional conflict was lower in the decision aid versus pamphlet groups, 22% versus 44% (p < 0.001). Significantly more patients in the decision aid versus pamphlet group rated information to be excellent for understanding lupus nephritis (49% versus 33%), risk factors (43% versus 27%), medication options (50% versus 33%; p ≤ 0.003 for all); and the ease of use of materials was higher in the decision aid versus pamphlet groups (51% versus 38%; p = 0.006). Key study limitations were the exclusion of men, short follow-up, and the lack of clinical outcomes, including medication adherence., Conclusions: An individualized decision aid was more effective than usual care in reducing decisional conflict for choice of immunosuppressive medications in women with lupus nephritis., Trial Registration: Clinicaltrials.gov, NCT02319525., Competing Interests: I have read the journal's policy and the authors of this manuscript have the following competing interests. JAS has received research grants from Takeda and Savient Pharmaceuticals and consultant fees from Savient, Takeda, Regeneron, Merz, Iroko, Bioiberica, Crealta/Horizon, Fidia, and Allergan Pharmaceuticals and WebMD, UBM LLC, Medscape, and the American College of Rheumatology. JAS served as the principal investigator for an investigator-initiated study funded by Horizon Pharmaceuticals through a grant to DINORA, Inc., a 501 (c)(3) entity. JAS is a member of the executive of OMERACT, an organization that develops outcome measures in rheumatology, and receives arms-length funding from 36 companies; a member of the American College of Rheumatology's (ACR) Annual Meeting Planning Committee (AMPC); Chair of the ACR Meet-the-Professor, Workshop and Study Group Subcommittee; and a member of the Veterans Affairs Rheumatology Field Advisory Committee. JAS is the editor and the Director of the UAB Cochrane Musculoskeletal Group Satellite Center on Network Meta-analysis. MD serves on an Independent Data Monitoring Committee for Biogen, Genentech, and Janssen Pharmaceuticals and as a consultant to Abbvie, Kezar, and AstraZeneca. KLW reports grants and personal fees from Pfizer, grants and personal fees from BMS, personal fees from Abbvie, grants and personal fees from UCB, personal fees from Lilly, personal fees from Galapagos, and personal fees from GSK, outside the submitted work.

Background: There is an increased practice of using value clarification exercises in decision aids that aim to improve shared decision making. Our objective was to systematically review to which extent conjoint analysis (CA) is used to elicit individual preferences for clinical decision support. We aimed to identify the common practices in the selection of attributes and levels, the design of choice tasks, and the instrument used to clarify values., Methods: We searched Scopus, PubMed, PsycINFO, and Web of Science to identify studies that developed a CA exercise to elicit individual patients' preferences related to medical decisions. We extracted data on the above-mentioned items., Results: Eight studies were identified. Studies included a fixed set of 4-8 attributes, which were predetermined by interviews, focus groups, or literature review. All studies used adaptive conjoint analysis (ACA) for their choice task design. Furthermore, all studies provided patients with their preference results in real time, although the type of outcome that was presented to patients differed (attribute importance or treatment scores). Among studies, patients were positive about the ACA exercise, whereas time and effort needed from clinicians to facilitate the ACA exercise were identified as the main barriers to implementation., Discussion: There is only limited published use of CA exercises in shared decision making. Most studies resembled each other in design choices made, but patients received different feedback among studies. Further research should focus on the feedback patients want to receive and how the CA results fit within the patient-physician dialogue.

Background: Shared decision-making (SDM) has mostly been used with adults and parents in the primary care setting, and there is limited knowledge on the use of SDM with parents of acutely ill children. The objective of this study was to review the literature on SDM with parents in the management of acutely ill children., Methods: We searched MEDLINE, SCOPUS, PsycINFO, the Cochrane Library, and ClinicalTrials.gov for English language studies published from the time of database inception to February, 2017. Study eligibility criterion was use of SDM with parents for children aged 18 years or younger with an acute medical problem., Results: We identified 2 ongoing clinical trials and 10 published studies that met inclusion criteria: 2 using hypothetical SDM scenarios, 1 mixed methods study, and 7 intervention studies. Only 1 study compared an SDM intervention with usual care in a randomized controlled trial. The limited literature shows that parents of acutely ill children have differing preferences for testing and/or treatment, and that they generally want the opportunity to express those preferences through an SDM process. Use of SDM often results in acutely ill children undergoing fewer and/or less intensive testing or treatment, although the effect on outcomes is unclear., Conclusions: Parents welcome participation in SDM for management decisions with their acutely ill child. Further investigation is needed to determine how best to implement SDM with parents of acutely ill children and to assess the effect of SDM on outcomes., (Copyright © 2017 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.)

Background: Order and amount of information influence patients' risk perceptions, but most studies have evaluated patients' reactions to written materials. The objective of this study was to examine the effect of 4 communication strategies, varying in their order and/or amount of information, on judgments related to an audible description of a new medication and among patients who varied in subjective numeracy., Methods: We created 5 versions of a hypothetical scenario describing a new medication. The versions were composed to elucidate whether order and/or amount of the information describing benefits and adverse events influenced how subjects valued a new medication. After listening to a randomly assigned version, perceived medication value was measured by asking subjects to choose one of the following statements: the risks outweigh the benefits, the risks and benefits are equally balanced, or the benefits outweigh the risks., Results: Of the 432 patients contacted, 389 participated in the study. Listening to a brief description of benefits followed by an extended description of adverse events resulted in a greater likelihood of perceiving that the medication's benefits outweighed the risks compared with 1) presenting the extended adverse events description before the benefits, 2) giving a greater amount of information related to benefits, and 3) sandwiching the adverse events between benefits. These associations were only observed among subjects with average or higher subjective numeracy., Conclusion: If confirmed in future studies, our results suggest that, for patients with average or better subjective numeracy, perceived medication value is highest when a brief presentation of benefits is followed by an extended description of adverse events.

Purpose of Review: Incorporation of the patients' perspective in clinical research is critical to ensure that outcomes measured reflect those, which matter most to patients. This review summarizes recent efforts to include the patients' perspective in the development of outcome measures and the importance of encouraging patient participation in decision-making and self-management., Recent Findings: Since the inclusion of fatigue as a patient-endorsed core outcome measure in rheumatoid arthritis (RA) trials, OMERACT has been instrumental in advocating for patient involvement in the development of core domains and instruments; current endeavors include cultivating an understanding of remission through the eyes of patients and gaining a sense of how to measure features of pain and 'stiffness' deemed as important to patients. The concept of remission was further explored in RA patients, highlighting a common goal of returning to normality; additionally, various tools have been developed to assess for unmet needs in rheumatology patients. Advances have also been made in the development and revision of patient-centered core measures in rheumatologic diagnoses outside of RA., Summary: Incorporating the patients' perspective is now considered an essential feature in outcomes research. Future research should focus on how best to involve patients in specific research activities.

Objective: Numerous factors can impede or facilitate patients' medication decision-making and adherence to physicians' recommendations. Little is known about how patients and physicians jointly view issues that affect the decision-making process. Our objective was to derive an empirical framework of patient-identified facilitators to lupus medication decision-making from key stakeholders (including 15 physicians, 5 patients/patient advocates, and 8 medical professionals) using a patient-centered cognitive mapping approach., Methods: We used nominal group patient panels to identify facilitators to lupus treatment decision-making. Stakeholders independently sorted the identified facilitators (n = 98) based on their similarities and rated the importance of each facilitator in patient decision-making. Data were analyzed using multidimensional scaling and hierarchical cluster analysis., Results: A cognitive map was derived that represents an empirical framework of facilitators for lupus treatment decisions from multiple stakeholders' perspectives. The facilitator clusters were 1) hope for a normal/healthy life, 2) understand benefits and effectiveness of taking medications, 3) desire to minimize side effects, 4) medication-related data, 5) medication effectiveness for "me," 6) family focus, 7) confidence in physician, 8) medication research, 9) reassurance about medication, and 10) medication economics., Conclusion: Consideration of how different stakeholders perceive the relative importance of lupus medication decision-making clusters is an important step toward improving patient-physician communication and effective shared decision-making. The empirically derived framework of medication decision-making facilitators can be used as a guide to develop a lupus decision aid that focuses on improving physician-patient communication., (© 2016, American College of Rheumatology.)

Rationale: Radiographic lung cancer screening guidelines and coverage requirements warrant a shared decision-making process. Guidance is needed regarding how to conduct shared decision making effectively. A useful organizing theme should include consideration of a patient's response to and tolerance of uncertainty associated with lung cancer screening., Objectives: The objectives of this study are to: (1) describe how patients respond to specific categories of uncertainty in the context of lung cancer screening, and (2) inform strategies for addressing concerns about uncertainty as part of the shared decision making., Methods: We performed two series of structured interviews on participants in a convenience sample of current or former cigarette smokers recruited from primary care and pulmonary practices in Philadelphia. An interview guide included prompts related to benefits, harms, and responses to general and specific types of uncertainty (stochastic, statistical, and evidentiary) associated with lung cancer screening. Interviews were audio-recorded, transcribed, and independently coded by two investigators. An inductive analysis was conducted, and major themes were identified., Measurements and Main Results: Twenty-two adults participated in the study. Sixty-eight percent were men, 72% were black or African American, and 50% met U.S. Preventive Services Task Force criteria for lung cancer screening. The primary themes to emerge from our study were: (1) the desire to decrease uncertainty may motivate lung cancer screening decisions; (2) uncertainty is an attribute of health states that impacts how patients weigh benefits and harms of lung cancer screening; (3) patient understanding and tolerance of uncertainty varies across stochastic, statistical, and evidentiary uncertainty; and (4) provider-patient communication may mitigate intolerance of uncertainty in the context of lung cancer screening., Conclusions: A systematic approach to understanding and addressing patients' concerns about uncertainty in the context of lung cancer screening can guide a patient-centered approach to shared decision making. The results of this study can inform provider-patient communication strategies regarding the decision to perform radiographic lung cancer screening.

Objective: How best to involve patients in the development of clinical practice guideline (CPG) recommendations is not known. We sought to determine the feasibility and value of developing CPG recommendations based on a voting panel composed entirely of patients, with the ultimate goal of comparing the patients' recommendations to ones developed by a physician-dominated voting panel on the same clinical questions., Methods: Ten patients with rheumatoid arthritis completed 8 hours of training on evidence-based medicine and guideline development. They constituted a voting panel and, with 2 American College of Rheumatology staff with expertise in CPG development and a physician facilitator, subsequently met at a face-to-face meeting to develop recommendations. They applied the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) methodology to formulate recommendations on 18 questions for which there was evidence warranting moderate or high confidence., Results: The patient panel developed recommendations for 16 of the 18 questions; for the other 2, the panel thought there were insufficient data to support a recommendation. For 13 of the 16 questions, the patient panel recommended the same course of action as did the physician-dominated panel. Differences were due to how the 2 panels valued the balance between benefits and harms., Conclusion: Patient and physician-dominated panels developed the same recommendations for most questions for which there was evidence warranting moderate to high confidence. Additional experiences are necessary to advance the evidence necessary to determine what panel composition is optimal to produce the best guidelines., (© 2015, American College of Rheumatology.)

Objective: To examine the potential value of a theory-based, interactive decision support tool in clinical practice for patients with rheumatoid arthritis who are candidates for biologic agents., Methods: We conducted an 8-week, 2-arm, parallel, single-blind pilot trial in which candidates for treatment escalation with a biologic agent were randomized to receive either a link to a web-based tool or usual care. Outcomes included changes in objective knowledge, subjective knowledge, values clarification, and satisfaction with risk communication as well as the proportion of subjects defined as making an informed choice to escalate care at 2 weeks., Results: A total of 125 subjects were randomized. Significant between-group differences at 2 weeks favoring the intervention group were seen for changes in objective knowledge, subjective knowledge, and values clarification. No significant between-group differences were found in subjects' satisfaction with risk communication. Among those deciding to escalate care, a greater percentage met the criteria for an informed choice at 2 weeks in the intervention group compared to the control group (32% versus 13%; P = 0.02). Improvements in subjective knowledge and values clarification persisted at 8 weeks. There were no between-group differences in objective knowledge at 8 weeks., Conclusion: In this study, use of a decision support tool at the time of decision-making resulted in improved objective and subjective knowledge, as well as values clarity, compared to usual care. Not all improvements were sustained, emphasizing the need to offer educational support should additional escalation of care be required over the course of the illness., (© 2015, American College of Rheumatology.)

Background: Decision making in knee osteoarthritis, with many treatment options, challenges patients and physicians alike. Unfortunately, physicians cannot describe in detail each treatment's benefits and risks. One promising adjunct to decision making in osteoarthritis is adaptive conjoint analysis (ACA)., Objective: To obtain insight into the experiences of elderly patients who use adaptive conjoint analysis to explore treatment options for their osteoarthritis., Design: Participants, all 65 and older, completed an ACA decision aid exploring their preferences with regard to the underlying attributes of osteoarthritis interventions. We used focus groups to obtain insight into their experiences using this software., Results: Content analysis distributed our participants' concerns into five areas. The predicted preferred treatment usually agreed with the individual's preference, but our participants experienced difficulty in four other domains: the choices presented by the software were sometimes confusing, the treatments presented were not the treatments of most interest, the researchers' claims about treatment characteristics were unpersuasive and cumulative overload sometimes developed., Conclusion: Adaptive conjoint analysis presented special challenges to our elderly participants; we believe that their relatively low level of computer comfort was a significant contributor to these problems. We suggest that other researchers choose the software's treatments and present the treatment attributes with care. The next and equally vital step is to educate participants about what to expect, including the limitations in choice and apparent arbitrariness of the trade-offs presented by the software. Providing participants with a sample ACA task before undertaking the study task may further improve participant understanding and engagement., (© 2012 John Wiley & Sons Ltd.)

Background: How drug adverse events (AEs) are communicated in the United States may mislead consumers and result in low adherence. Requiring written information to include numeric AE-likelihood information might lessen these effects, but providing numbers may disadvantage less skilled populations. The objective was to determine risk comprehension and willingness to use a medication when presented with numeric or nonnumeric AE-likelihood information across age, numeracy, and cholesterol-lowering drug-use groups., Methods: In a cross-sectional Internet survey (N = 905; American Life Panel, 15 May 2008 to 18 June 2008), respondents were presented with a hypothetical prescription medication for high cholesterol. AE likelihoods were described using 1 of 6 formats (nonnumeric: consumer medication information (CMI)-like list, risk labels; numeric: percentage, frequency, risk labels + percentage, risk labels + frequency). Main outcome measures were risk comprehension (recoded to indicate presence/absence of risk overestimation and underestimation), willingness to use the medication (7-point scale; not likely = 0, very likely = 6), and main reason for willingness (chosen from 8 predefined reasons)., Results: Individuals given nonnumeric information were more likely to overestimate risk, were less willing to take the medication, and gave different reasons than those provided numeric information across numeracy and age groups (e.g., among the less numerate, 69% and 18% overestimated risks in nonnumeric and numeric formats, respectively; among the more numerate, these same proportions were 66% and 6%). Less numerate middle-aged and older adults, however, showed less influence of numeric format on willingness to take the medication. It is unclear whether differences are clinically meaningful, although some differences are large., Conclusions: Providing numeric AE-likelihood information (compared with nonnumeric) is likely to increase risk comprehension across numeracy and age levels. Its effects on uptake and adherence of prescribed drugs should be similar across the population, except perhaps in older, less numerate individuals.

Objective: Despite the importance of achieving tight control, many patients with rheumatoid arthritis (RA) are not effectively treated with disease-modifying antirheumatic drugs. The objective of this study was to develop a decision support tool to inform RA patients with ongoing active disease about the risks and benefits related to biologic therapy., Methods: We developed a balanced, web-based, decision support tool. Options, values, and probabilistic information were described using theoretically supported formulations. We conducted a pre-/posttest study to assess preliminary evidence of the tool's efficacy in improving knowledge related to biologics, clarity of values, willingness to take a biologic, and informed choice., Results: We interviewed 104 subjects (mean age 62 years, 84% women, 87% white, and median duration of RA 8 years). Knowledge (coded on a 0-20 scale) and willingness to take a biologic (coded on a 0-10 scale) significantly increased after viewing the tool (mean differences 2.3 and 1.4, respectively; P < 0.0001 for both). Perceived knowledge and values clarity (coded on 0-100 scales) also significantly improved (mean differences 20.4 and 20.8, respectively; P < 0.0001 for both). The proportion of subjects making an informed value-concordant choice increased substantially from 35% to 64%., Conclusion: A tool designed to effectively communicate the risks and benefits associated with biologic therapy increased knowledge, patient willingness to escalate care, and the likelihood of making an informed choice. The results of this study support the need for a clinical trial to examine the impact of the tool in clinical practice., (Copyright © 2012 by the American College of Rheumatology.)

Objective: Patients with abdominal aortic aneurysms (AAAs) who are surgical candidates have as many as three options: open surgery, endovascular surgery, or no surgery. As with all treatment decisions, informed patient preferences are critical. Decision support tools have the potential to better inform patients about the risks and benefits associated with each treatment option and to empower patients to participate meaningfully in the decision-making process. The objective of this study was to develop and pilot test a decision support tool for patients with AAAs., Methods: We developed a personalized, interactive, computer-based decision support tool reflecting the most current outcomes data and input from surgeons and patients. We piloted the tool with AAA repair candidates who used the tool prior to meeting with their surgeon. Patients were recruited from a university-based vascular surgery clinic and affiliated VA hospital clinic. To determine feasibility and acceptability, the following outcomes were measured: (1) percent of patients who agreed to participate, (2) length of time required to use the tool, (3) the amount of assistance required to use the tool, and (4) patients' opinions on the acceptability of the tool. To assess effectiveness of the tool, we measured change in knowledge and decisional conflict pre- and post-tool using the paired t-test., Results: One hundred percent of patients who were approached (n = 12) agreed to participate in the study. The tool was administered in a median time of 35 minutes (range, 25-45 minutes), and all patients were able to navigate the program with minor technical assistance. Mean knowledge scores increased from 56% to 90% (P = .005), and decisional conflict scores decreased from 29% to 8% (P = .04). Overall, patients reported that the program content was balanced across treatment options, presented information clearly and concisely, helped them to organize their thoughts about the decision, and prepared them to talk to their surgeon about what mattered most to them., Conclusions: Preliminary evidence suggests that use of an evidence-based AAA decision support tool is feasible and acceptable to patients, increases knowledge, and decreases decisional conflict. Widespread use of such a tool might improve the content and quality of informed consent for this difficult treatment decision., (Copyright © 2011 Society for Vascular Surgery. Published by Mosby, Inc. All rights reserved.)

Objective: experts recommend that clinicians tailor their interactions according to each patient's preferred decision style. Because participation is associated with improved clinical outcomes, factors which modify preferred role should be addressed before determining the level at which patients wish to participate. The objective of this study was to determine if certainty related to initiating treatment is related to preferred role in decision making., Methods: we conducted face-to-face interviews with 142 patients eligible for the treatment of hepatitis C. Preferred role in decision making was measured using the Control Preferences Scale and certainty was measured with 11-point numeric rating scale., Results: subjects who were uncertain whether they wanted to start treatment were more likely to prefer Role 2: "to make the final selection of my treatment after seriously considering my doctor's opinion" over Role 1 "to make the final selection about which treatment I will receive" compared to those who were certain [Adjusted OR (95% CI)=4.9 (1.7-14.5)]. Subjects who were uncertain were also more likely to prefer sharing responsibility for decision making over Role 1 compared to those who were certain [Adjusted OR (95% CI)=3.7 (1.3-10.4)]., Conclusions: certainty is associated with preferred decision styles. Physicians should ascertain their patients' levels of uncertainty and adjust their input accordingly., Practice Implication: physicians should ascertain their patients' levels of uncertainty and adjust their input accordingly., (Published by Elsevier Ireland Ltd.)

Objective: Studies have shown that increasing patient participation in decision making decreases utilization of risky procedures. It has been demonstrated that risk perception is increased under conditions that emphasize volition, or the act of choosing. The objective of this study was to examine whether emphasizing volition increases patients' risk perception and decreases their willingness to accept risk., Methods: Consecutive patients attending outpatient clinic appointments viewed a video in which a physician described the availability of a new medication associated with a rare risk of a serious side effect. Patients' willingness to accept treatment and worry about the risk of the serious side effect were measured under 2 different conditions: one that minimized patient involvement and the one that maximized patient involvement in the decision-making process., Results: The willingness of the subject to take the proposed medication was lower (mean +/- SD 4.2 +/- 3.7 versus 5.3 +/- 3.7; P < 0.001) and their worry about the risk of the adverse event was greater in the high compared with the low involvement condition (mean +/- SD 6.1 +/- 3.7 versus 5.5 +/- 3.8; P < 0.001)., Conclusion: Increasing patient responsibility in medical decision making may decrease the patient's willingness to accept risky treatment options.

Purpose: Variability in reports of patients' preferences to participate in decision making may be due in part to a lack of understanding about how patients conceptualize their participation. The authors sought to learn more about how patients view their involvement in decisions related to their health care., Methods: The authors conducted individual interviews to allow patients to frame the decision-making process from their own perspective. The constant comparative-method approach to analysis was employed to ensure that the analysts defined the codes in a consistent manner., Results: Twenty-six persons were interviewed. The main themes discussed by the participants reflecting how they viewed their involvement in medical decision making are the following: 1) decision making is often an ongoing process in which patient participation may change over time, 2) decision making is performed within an extended social context, 3) the decisions patients report being involved in are often distinct from those traditionally studied (choice of treatment or screening strategies), 4) patient involvement in decision making occurs in response to physicians' recommendations, and 5) patients make choices in the context of their specific illness perceptions., Conclusions: Participants in this study view their participation in decision making as including ideas distinct from those traditionally discussed by researchers. These findings suggest that the variability in patient participation noted in previous studies may be due in part to limitations in study design.

Objective: Studies have shown that patients with knee pain are not well informed of their potential treatment options and that patient preferences are often discordant with physician practices. The objective of this pilot study was to test the efficacy of a computer tool to improve informed decision-making for patients with knee pain in an outpatient primary care clinic setting., Methods: Patients with knee pain were randomized to receive an information pamphlet or to perform a computer task. The latter was designed to elicit preferences based on patient tradeoffs for route of administration, benefits, and side effects of commonly used treatment options for knee pain. After performing the task, participants were given a printed handout illustrating their preferences., Results: In total, 87 patients were randomized. Decisional self-efficacy, preparedness to participate in decision-making, and arthritis self-efficacy were greater in participants randomized to the intervention arm compared to those receiving the information pamphlet (p < 0.05 for all comparisons)., Conclusion: Participants using a tool designed to increase patient awareness of choice and evaluate the tradeoffs related to available treatment options were more confident in their ability to obtain information about available treatment options, were better prepared to participate in their visit, and had better arthritis related self-efficacy compared to patients receiving an information pamphlet. The results of this pilot study justify future large-scale trials to determine the effectiveness of similar interventions.

Background: Patient participation in shared decision making (SDM) results in increased patient knowledge, adherence, and improved outcomes. Despite the benefits of the SDM model, many patients do not attain the level of participation they desire., Objective: To gain a more complete understanding of the essential elements, or the prerequisites, critical to active patient participation in medical decision making from the patient's perspective., Design: Qualitative study., Setting: Individual, in-depth patient interviews were conducted until thematic saturation was reached. Two analysts independently read the transcripts and jointly developed a list of codes., Patients: Twenty-six consecutive subjects drawn from community dwelling subjects undergoing bone density measurements., Measurements: Respondents' experiences and beliefs related to patient participation in SDM., Results: Five elements were repeatedly described by respondents as being essential to enable patient participation in medical decision making: (1) patient knowledge, (2) explicit encouragement of patient participation by physicians, (3) appreciation of the patient's responsibility/rights to play an active role in decision making, (4) awareness of choice, and (5) time., Limitations: The generalizability of the results is limited by the homogeneity of the study sample., Conclusions: Our findings have important clinical implications and suggest that several needs must be met before patients can become active participants in decisions related to their health care. These needs include ensuring that patients (1) appreciate that there is uncertainty in medicine and "buy in" to the importance of active patient participation in decisions related to their health care, (2) understand the trade-offs related to available options, and (3) have the opportunity to discuss these options with their physician to arrive at a decision concordant with their values.

Purpose: There are few data describing decision-making in chronic hepatitis C infection from the patient's perspective. In this study, we sought to investigate the factors that influence patients' decisions as they consider treatment for hepatitis C infection., Subjects: Consecutive patients attending outpatient liver clinics were recruited. Purposeful sampling was employed to include patients who were currently being treated or had recently been treated for chronic hepatitis C infection with pegylated-interferon and ribavirin as well as patients who had refused therapy., Methods: We conducted focus groups until thematic saturation was reached. All focus groups were facilitated by the same PhD-level senior research scientist, and constant comparative methods were used to analyze the data., Results: A total of 40 patients (80% male) participated in 8 focus groups. The factors influencing patients' decision-making that emerged most frequently during the focus groups were consideration of risk benefit tradeoffs, protected values, heuristics, participants' conceptualization of hepatitis C infection, social issues, and physicians' recommendations., Conclusion: Ideally, complex decision-making is based on careful consideration of the tradeoffs related to available options. Our findings suggest that patients' treatment decisions are influenced by multiple factors besides the risks and benefits of interferon and ribavirin. By being aware of these factors physicians can improve decision-making in hepatitis C infection by 1) determining whether patients' decisions are biased by heuristics or protect values, 2) understanding how patients' conceptualization of their illness influences their attitudes toward therapy, and by 3) ensuring that patients understand that social responsibilities need not necessarily preclude treatment because therapy can be discontinued if adverse effects become intolerable.

Background: Cardiovascular disease (CVD) is the most common cause of death among people with rheumatoid arthritis (RA), with an estimated increased risk of 50–60% compared to the general population. Lipid-lowering strategies have been shown to lower CVD risk significantly in people with RA and hyperlipidemia. Thus, CVD risk assessment has an important role to play in reducing CVD among people with RA. Yet currently only 37 to 45% of this population are receiving primary lipids screening. This paper describes the CArdiovascular Risk assEssment for RA (CARE RA) intervention, which is designed to address this issue. CARE RA is a peer coach intervention, that is, an intervention in which a person with RA coaches another person with RA, which is designed to educate people with RA about the relation between RA and CVD risk and to help them obtain evidence-based CVD risk assessment and treatment. Methods: This is an open-label pilot study that will test if the participants assigned to complete the CARE RA curriculum with a peer coach will receive a cardiovascular risk assessment more frequently compared to those that complete the CARE RA curriculum by themselves. The CARE RA intervention is guided by Social Cognitive Theory. Participants in the peer coach intervention arm will receive the assistance of a peer coach who will call the participants once a week for 5 weeks to go over the CARE RA curriculum and train them on how to obtain CVD risk assessment. The control arm will complete the CARE RA curriculum without any assistance. Participants will be randomized 1:1 either to the control arm or to the peer coach intervention arm. The primary outcome is a participant's having a CVD risk assessment or initiating a statin, if indicated. Secondary outcomes include patient activation and RA medication adherence. The RE-AIM implementation framework guides the implementation and evaluation of the intervention. Discussion: This pilot study will test the feasibility of the peer coach intervention in anticipation of a larger trial. CARE RA pioneers the use of peer coaches to facilitate the implementation of evidence-based treatment guidelines among people with RA. Trial registration: ClinicalTrials.gov NCT04488497. Registered on July 28, 2020. [ABSTRACT FROM AUTHOR]

Background: Web-based tools developed to facilitate a shared decision-making (SDM) process may facilitate the implementation of lung cancer screening (LCS), an evidence-based intervention to improve cancer outcomes. Veterans have specific risk factors and shared experiences that affect the benefits and potential harms of LCS and thus may value a veteran-centric LCS decision tool (LCSDecTool). Objective: This study aims to conduct usability testing of an LCSDecTool designed for veterans receiving care at a Veteran Affairs medical center. Methods: Usability testing of the LCSDecTool was conducted in a prototype version (phase 1) and a high-fidelity version (phase 2). A total of 18 veterans and 8 clinicians participated in phase 1, and 43 veterans participated in phase 2. Quantitative outcomes from the users included the System Usability Scale (SUS) and the End User Computing Satisfaction (EUCS) in phase 1 and the SUS, EUCS, and Patient Engagement scale in phase 2. Qualitative data were obtained from observations of user sessions and brief interviews. The results of phase 1 informed the modifications of the prototype for the high-fidelity version. Phase 2 usability testing took place in the context of a pilot hybrid type 1 effectiveness-implementation trial. Results: In the phase 1 prototype usability testing, the mean SUS score (potential range: 0-100) was 81.90 (SD 9.80), corresponding to an excellent level of usability. The mean EUCS score (potential range: 1-5) was 4.30 (SD 0.71). In the phase 2 high-fidelity usability testing, the mean SUS score was 65.76 (SD 15.23), corresponding to a good level of usability. The mean EUCS score was 3.91 (SD 0.95); and the mean Patient Engagement scale score (potential range 1 [low] to 5 [high]) was 4.62 (SD 0.67). The median time to completion in minutes was 13 (IQR 10-16). A thematic analysis of user statements documented during phase 2 high-fidelity usability testing identified the following themes: a low baseline level of awareness and knowledge about LCS increased after use of the LCSDecTool; users sought more detailed descriptions about the LCS process; the LCSDecTool was generally easy to use, but specific navigation challenges remained; some users noted difficulty understanding medical terms used in the LCSDecTool; and use of the tool evoked veterans' struggles with prior attempts at smoking cessation. Conclusions: Our findings support the development and use of this eHealth technology in the primary care clinical setting as a way to engage veterans, inform them about a new cancer control screening test, and prepare them to participate in an SDM discussion with their provider. [ABSTRACT FROM AUTHOR]

Background: Patient participation in shared decision making (SDM) results in increased patient knowledge, adherence, and improved outcomes. Despite the benefits of the SDM model, many patients do not attain the level of participation they desire.Objective: To gain a more complete understanding of the essential elements, or the prerequisites, critical to active patient participation in medical decision making from the patient's perspective.Design: Qualitative study.Setting: Individual, in-depth patient interviews were conducted until thematic saturation was reached. Two analysts independently read the transcripts and jointly developed a list of codes.Patients: Twenty-six consecutive subjects drawn from community dwelling subjects undergoing bone density measurements.Measurements: Respondents' experiences and beliefs related to patient participation in SDM.Results: Five elements were repeatedly described by respondents as being essential to enable patient participation in medical decision making: (1) patient knowledge, (2) explicit encouragement of patient participation by physicians, (3) appreciation of the patient's responsibility/rights to play an active role in decision making, (4) awareness of choice, and (5) time.Limitations: The generalizability of the results is limited by the homogeneity of the study sample.Conclusions: Our findings have important clinical implications and suggest that several needs must be met before patients can become active participants in decisions related to their health care. These needs include ensuring that patients (1) appreciate that there is uncertainty in medicine and "buy in" to the importance of active patient participation in decisions related to their health care, (2) understand the trade-offs related to available options, and (3) have the opportunity to discuss these options with their physician to arrive at a decision concordant with their values. [ABSTRACT FROM AUTHOR]