Danil V. Makarov, MD, MHS (Chair), Angela Fagerlin, PhD (Co-chair), Kristin Chrouser, MD, MPH, John L. Gore, MD, MS, Jodi Maranchie, MD, FACS, Matthew E. Nielsen, MD, MS, FACS, Christopher Saigal, MD, MPH, Christopher Tessier, MD
Jennifer Bertsch, Heddy Hubbard, PhD, MPH, RN, FAAN, Carrie Nettles (Methodologist), Suzanne Pope, MBA, Cecelia Shertz Wall (Medical Writer), Victoria Wilder (Medical Librarian)
The American Urological Association gratefully acknowledges the review assistance of Dr. Margaret Holmes-Rovner.
Introduction: Shared decision making (SDM) is a collaborative approach to care that seeks to improve the quality of medical decisions by helping patients choose options concordant with their values and in accordance with the best available scientific evidence.
Methods: A literature review was performed targeting publications between 2003 and 2014 on the topic of SDM and decision aids (DA) for urologic conditions. An expert panel was convened to evaluate this information and create this white paper with the purpose of educating the urologic community on these issues.
Results: Shared decision making represents the state of the art in patient counseling. Patients who have engaged in SDM have greater knowledge and satisfaction, as well as greater engagement with care. Numerous organizations make available free resources for SDM, including DAs and tools to evaluate the quality of SDM.
Conclusions: Shared decision making is an important component of high-quality health care delivery and future reimbursement models. In appropriate circumstances, urologists should adopt SDM into routine clinical practice.
Over the last several decades, scientists studying medical decision making have strongly recommended the utilization of a shared decision making (SDM) process for patients and their physicians. SDM has been demonstrated to be associated with increased patient knowledge and satisfaction, higher patient engagement with care and possible reduction of medical costs. 1-3 Additionally, SDM is at the core of several delivery system reforms outlined in the Patient Protection and Affordable Care Act (ACA). In keeping with the state of the art, several recent American Urological Association guidelines on complex urologic topics suggest, either explicitly 4,5 or implicitly, 6,7 the necessity of SDM to optimize urological care for our patients. However, physicians in general, including urologists, have a poor understanding of what SDM is and how to implement it into their clinical practices. 2,8 In order to improve the quality of care for urological patients, the Quality Improvement and Patient Safety Committee has in this white paper reviewed the literature in the field of urologic SDM and made suggestions for how it might best be implemented into urological practice.
Shared Decision Making
SDM is a collaborative decision-making process between patients and their health care providers relevant to medical decisions where multiple options are considered clinically acceptable. This approach is particularly relevant to clinical scenarios where the ratio of benefits to harms is uncertain, equivalent or “preference sensitive” (e.g., dependent on the value that an individual patient may place on them). 9 SDM aims to improve the quality of medical decisions by helping patients choose options concordant with their values and in accordance with the best available scientific evidence. Randomized controlled trials of SDM versus routine care have demonstrated that patients engaged in SDM are more knowledgeable, have more realistic expectations, participate more actively in the care process and more frequently arrive at decisions aligned with their personal preferences. 10,11
The increasing focus on patient-centered care in health care reform has made SDM a frequent topic of discussion in recent years. In the landmark 2001 report “Crossing the Quality Chasm,” the Institute of Medicine articulated the provision of “care that is respectful of and responsive to individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions” as one of six central specific aims for improving quality of care. 12 Additionally, the ACA has established a program to develop, test and disseminate patient decision aids (DAs), which are a central feature of SDM.
One challenge of implementing SDM for researchers—not to mention practicing physicians—is the lack of a universally accepted definition of the concept. In a systematic review, Makoul and Clayman found that fewer than 40 percent (161 of 418, 38.5 percent) of articles examined included a conceptual definition of SDM. Although 31 concepts were used to explicate SDM, the only categories that appeared in more than half of the 161 definitions were “patient values/preferences” (in 67.1 percent) and “options” (in 50.9 percent). Makoul and Clayman concluded that a definition of SDM is necessary for operationalizing SDM in further research, and provided the essential, ideal and general qualities of SDM. 13 The most widely accepted SDM model as proposed by Charles et al. defines its key characteristics as (1) involvement of both the doctor and the patient in the decision-making process; (2) both parties share information with each other; (3) both take steps to share in the process of building consensus through the expression of preferences; and (4) both the doctor and patient agree on the decision to implement. 14 This is the model of SDM that will be utilized in this white paper.
Benefits of Shared Decision Making
SDM requires a partnership between the doctor, the patient and sometimes the patient’s family. Ideally, it includes a balanced presentation of options and outcomes tailored to the individual patient’s risk. 15 Equally important is active engagement with the patient to help clarify his or her own values and preferences. 16 SDM benefits both physicians and patients and is considered by many to be essential in the presence of multiple appropriate options or uncertainty about the risks or benefits of a medical decision. 17
The benefits of SDM result from a relationship of trust and mutual respect between patient and physician. 18 Patients who perceive that they have participated in their health care decisions more often report feeling informed or empowered, 16 are more likely to express higher satisfaction with their medical care and report better quality of life. They are less likely to have decisional regret and more likely to adhere to the agreed-upon medical regimen. 19,20 Such empowerment may be particularly important for long-term, anxiety-evoking decisions.
Numerous studies suggest that people presented with the benefits and harms of difficult health care choices are capable of coming to reasonable decisions, often different from those they might have made without SDM. Balanced presentation of prostate cancer natural history, diagnosis and treatment options led to decreased interest in prostate cancer screening in six of nine studies 21 and increased preference for watchful waiting for low-risk disease. 22 Only one-quarter of high-risk prostate cancer patients considering surgery elect a nerve-sparing approach when participating in SDM to explain the risks and benefits of nerve-sparing prostatectomy. 23 With physician assistance, patients and families can prioritize their values and make rational choices with more realistic expectations, less decisional conflict and increased long-term satisfaction. 18
Use of Shared Decision Making in Clinical Practice
Despite the prevalence of preference-sensitive conditions encountered in urologic practice, there are few data regarding the frequency with which SDM is employed in practice. A large, cross-specialty physician survey suggested that over 70 percent of physicians across primary care and surgical subspecialties identify SDM as their preferred style of clinical decision making over paternalism or consumerism. 24 However, studies assessing the use of SDM in practice find that fewer than 10 percent of providers actually utilize SDM correctly. 18 Despite wanting to play a more active role in their health care decision making, 25,26 many patients report not being sufficiently involved in the decision process.
Studies consistently demonstrate a disappointing gap between ideal and actual practice. Among men undergoing PSA screening, only 42-51 percent undergoing PSA screening discussed its advantages with their physicians, while only between 7 and 20 percent reported discussing the disadvantages of PSA testing. 27,28 Even fewer, 15 percent, discussed the uncertainty surrounding PSA screening. These disparities have the potential to affect clinical practice, as a recent study demonstrated that men forgoing PSA screening were more likely never to have been counseled (88 percent) regarding the risks and benefits of the test than those who were screened (39 percent). 29
A similar lack of SDM occurs among patients considering various treatments. One study demonstrated that only 64 percent of men undergoing surgery for prostate cancer had been presented at least one nonsurgical alternative as a serious option. Almost all (94 percent) patients reported discussing the advantages of surgery, a majority (63 percent) discussed the disadvantages and over three-fourths (76 percent) were asked about their treatment preferences. 30 Similar results were found among patients undergoing elective coronary stenting. Further characterization of the extent and effectiveness of SDM across a broader spectrum of preference-sensitive urological conditions is an area for future research.
Limitations of Shared Decision Making
Some patients may not desire SDM. Although a large number of studies on the topic find that most patients wish to engage in SDM, they also describe a minority of patients who do not wish to participate in their own decisions. Some studies have tried to establish the characteristics of such patients. For example, early work in this area found that younger patients were more interested in SDM. 31 However, others found that demographics play only a limited role in explaining the variations in attitudes among patients. 31 Before deciding SDM is not appropriate for a patient, a clinician should consider whether the patient is fully aware that there is more than one option for treatment, as well as the trade-offs involved with the options.
There is a perception that the formal process of informing a patient about treatment options, eliciting preferences for outcomes and arriving at a shared decision may not be feasible in practices with limited resources. However, there is no strong quantitative evidence supporting the notion that SDM requires more time than usual care; some studies demonstrate no difference, some suggest that SDM required more time than usual care and others suggest that less time was necessary. 11,32 This heterogeneity is likely due to the variety of interventions characterized as “SDM.” Regardless of time necessary for the SDM process, its benefits likely merit its implementation even if additional time were required.
Measuring the Quality of Shared Decision Making
The process underlying SDM is a structured collaboration between physician and patient, sometimes supported by a DA. However, the success of this process may be variable based on the quality of the performance of several key steps outlined in the section addressing training urologists to use SDM. The SDM process is linked to the outcome of “decision quality.” This construct has been described in various ways, but usually is comprised of dimensions such as the consistency of an individual’s values with the treatment received, satisfaction with the decision, evidence of desired level of participation in decision making, decreased decisional conflict, decreased decisional regret and improved patient knowledge about the condition and its treatment. 33 Sholl and colleagues conducted a review of existing instruments to measure the quality of decisions made under SDM. A total of 19 validated instruments were identified, though many have not been validated across health care settings or patient communities. 34 The Decisional Conflict scale is perhaps the most widely validated and used measure of the decision process, though it has come under some criticism. 35 A four-item version of this scale, the SURE scale, is also available for routine clinical use and correlates with the Decisional Conflict Scale. 36 Additionally, many suggest that measuring concordance between preferences and treatment choices, as well as decision-specific knowledge, are conceptually critical. 37-39 The National Cancer Institute (NCI) is an excellent source of survey measures for decision quality/decision processes, 40 as is Ottawa Health Research Institute. 41 Qualitative measures also exist to quantify the degree to which SDM behaviors occur in a clinical visit (e.g., whether specific questions are asked), though these measures (e.g., OPTION [observing patient involvement] scale) require audio recording and third-party review of the visit. 42
The perspective of the stakeholder evaluating decision quality is important in determining the specific measures used in its description. Measurement of SDM outcomes can help health systems and clinicians understand whether their efforts in this area are successful, and if they are not, how to identify targets for remediation. In addition, measurement of SDM outcomes can inform federal and private compensation. Since its inclusion in ACA, SDM is becoming part of federal regulation and is being mandated by some Accountable Care Organization (ACO) contracts. Such stakeholders might require a parsimonious measurement set that is feasibly implemented into routine care or can be assessed using data extracted from an electronic medical record (EMR). From the academic perspective, detailed measures will be important for research and progress in the field.
Patient Decision Aids
Engaging a patient in SDM and ensuring all of its principal components are addressed may be a complex task. Evidence-based patient DAs have been developed as tools to facilitate and streamline this process. DAs come in various media formats (e.g., brochures, websites, videos) and aim to provide information about the clinical condition, attributes of the options and a framework to clarify and communicate the patient’s personal values. The International Patient Decision Aid Standards (IPDAS) Collaboration has an established and well-regarded quality assessment framework, including 44 items qualifying, certifying and establishing the quality of DAs. 43-45 To further expedite the assessment of DAs, IPDAS has created a checklist framed around questions related to content, process and effectiveness. 44,46 In addition to the IPDAS framework, the Agency for Healthcare Research and Quality (AHRQ) has developed the Patient Education Materials Assessment Tool (PEMAT), which provides a systematic method for clinicians to select among the multitude of patient educational materials based on their understandability and their actionability. 47 The PEMAT can be used in a spreadsheet to score DAs; those having the highest scores are most appropriate for use by the practitioner evaluating them.
Decision Aid Format
Although the majority of DAs today are increasingly Internet-based, the format in which DAs are delivered has evolved significantly over the last 25 years. Early versions of DAs were typically either booklets or audio recordings accompanied by booklets. Other formats have included video cassettes, DVDs, prompt sheets, decision boards and option grids. AHRQ’s report on cancer decision support tools suggests that use of audio and visual tools (e.g., audiotapes, video cassettes/DVDs and CD-ROMs) has decreased over the last 25 years, with a significant accompanying increase in software or Internet-based DAs. 48 As more DAs are being designed for the Internet, IPDAS has developed specific criteria for Internet DAs (e.g., permit printing as single document, make it easy for patients to return to the decision aid, provide a step-by-step way to move through Web pages). 46 Such efforts are especially important given that, in spite of the proliferation of Internet-based DAs, few have employed health technology research best practices (e.g., user experience design, human factors) and few have been rigorously tested using randomized controlled trials. 49
Although there have been numerous randomized trials comparing decision outcomes (e.g., knowledge, satisfaction, interest in SDM, treatment choice 11) between patients receiving a DA and those not receiving a DA, there have been few studies of how delivery formats (e.g., booklet versus computer-based tool) affect these same outcomes. The authors of an AHRQ review suggested that there was no evidence that delivery format altered the effectiveness of the tools; 48 however, the strength of evidence on this topic was low. Other research suggests that patients often prefer visual aids, particularly those demonstrating the risks and benefits of treatment options, 15 and patients more frequently express a preference for printed material over video. 50-53 Such media format preferences may vary based on patient age, socioeconomic status and the condition represented on the DA. Some researchers have found that older populations, such as women aged 75 years and older, almost unanimously (98 percent in one study) preferred a paper-based rather than a computer-based tool. 54 Further research is needed to test whether specific Internet features (e.g., audio voiceover, interactive graphics, effects of tailoring) impact key decision outcomes, since a number of recent studies have shown that such additions provide inconsistent or limited benefit to readers. 48,55,56 Some studies have suggested that newer Internet-based DAs with the capability to incorporate personal risk into an interactive presentation have been shown to facilitate discussions of colorectal cancer screening, 57,58 yet an AHRQ review found that interactivity (e.g., personalized risk information) did not result in additional benefits compared to tools without interactivity. The Committee feels the field would benefit significantly by randomized controlled trials testing the effectiveness of different types of delivery formats across diseases and populations, especially in regard to Internet-based tools.
Benefits of Decision Aids
DAs are designed to increase knowledge about specific disease states, estimate personal risk, help clarify personal values and ideally help patients better communicate with their physicians. Using a DA prior to the physician encounter often prepares patients for the subsequent SDM consultation 59 by increasing their knowledge of their disease and treatment options and promoting a sense of involvement by patient and caregiver. Although DAs alone cannot replace SDM, 18 they clearly enhance and facilitate it for both physicians and patients. DAs improve accurate risk perceptions, meaning that patients who have used a DA have a better assessment of the probabilities of various disease states after treatment. 8
In addition to DAs focused on disease education, a number of DAs have been designed to assess cognitive and psychological status or to assist with values prioritization. Such DAs can help tailor the discussion to the patient’s specific needs. 18,60,61 The information collected from patients using DAs can also help physicians tailor their consultations, facilitating physicians’ understanding of each patient’s concerns. 62 DAs that include values clarification exercises could improve concordance between patient values and the treatment received; however, the science of values clarification is still in its infancy. 63 The workgroup feels that future research could inform the optimal approach to values clarification and how it should be integrated within decision aids.
When used as part of SDM for prostate cancer screening, the use of DAs improves short-term disease-specific knowledge and intent to discuss screening. 21,64 The effect of DA use on screening rates has varied greatly across studies. 8 Of 10 studies examining PSA screening, three demonstrated reductions in screening rates, while seven did not. DAs designed to illustrate personal risk such as nomograms or computer-based risk calculators can further tailor the SDM consultation and are widely used for genitourinary malignancies. 65 Studies also suggest that DAs promote a perception of decreased decisional conflict and treatment satisfaction, 11,21 as well as decreased levels of anxiety and distress, among men with newly diagnosed prostate cancer, though the relationship is uncertain for other disease conditions. 8,66 Isebaert and colleagues demonstrated that DAs may improve the patient-physician interaction, as well as help patients discuss their disease with family members. 59
Limitations of Decision Aids
In spite of all their benefits, in practice DAs may only have a limited effect on health outcomes. This is because SDM is most appropriately used in situations in which there is no clear best option. Additionally, DAs have demonstrated a limited effect on patient satisfaction. 10 This may be the result of a “ceiling effect,” whereby patients may report satisfaction with all decisions. DAs may be less effective among patients with low health literacy or numeracy. 67 Because DAs are often used prior to the physician encounter, physicians may not be aware of any potential comprehension difficulties a patient may be having. To mitigate this important limitation, IPDAS recommends assessing the health literacy of a patient population and then selecting or developing a DA written at that level. 67
Decision Aids Relevant to Urologic Practice
Because of the myriad media in which DAs exist, these tools may be readily adapted to a variety of practice settings. 68 Presently, there is no centralized source of urology-focused DAs. However, several online resources exist for a wide spectrum of diseases, including urologic conditions. The “A to Z Inventory” catalogue provided by the Ottawa Hospital Research Institute (OHRI) 69 is indexed by health topic descriptions and currently contains urology-focused DAs on circumcision, prostate cancer, PSA screening, BPH management, testicular cancer, undescended testes and female urinary incontinence. The OHRI DA website systematically reviews DAs using Cochrane methods and requires that these DAs pass IPDAS-quality criteria. OHRI also provides resources for research and for the development of patient DAs. 69 Additionally, AHRQ has a library of decision support tools, including a DA for treatment of localized prostate cancer, 47 and the Urology Care Foundation highlights tools for several urologic conditions on its website. 70
Barriers to the Implementation of Shared Decision Aids
Despite the benefits of SDM, its uptake and use in practice has been surprisingly limited. 71,72 Barriers to implementation of SDM are many and varied. 32 Such barriers are categorized below as stemming from the attitudes and behaviors of both providers and patients, as well as from system-level influences. Some barriers involve multiple categories.
Providers sometimes do not see the need for SDM or do not believe the evidence supporting it. However, even providers who do recognize SDM’s theoretical advantages may still not routinely implement SDM into their practices. Studies have found that fewer than 10 percent of providers correctly implement SDM in their practices. 71 Some providers find SDM techniques feel “artificial” or are challenging to learn and utilize, suggesting poor self-efficacy. 42,73 Others consider it difficult either to communicate the basics of SDM, especially to passive patients, or to assess how much disease-specific knowledge or decision-making involvement a patient wants. 73 Additionally, incomplete understanding of the differences between SDM and usual care can lead to an insufficient change in behavior. 74,75
The most common barrier to SDM implementation is the flawed assumption that SDM will lengthen consultation time. 32 Additionally, some physicians perceive SDM as not attractive to patients because of characteristics such as patient age, gender, anxiety level, cultural background, personality, education or health literacy. 32,42,73,76,77 However, when patients are studied, they often feel that providers underestimate their interest in participating in SDM. 32,77 Many providers may be pre-selecting patients for SDM who they perceive as having interest in the process or having the capability of deriving benefit from SDM. 63 Such bias decreases access to SMD and may exacerbate racial and socioeconomic disparities already present in the use of SDM. 78,79
Other more subtle provider attitudes may create additional barriers to SDM implementation. Some providers perceive that SDM challenges their autonomy by involving patients more closely in their own health decisions; such an attitude on the part of physicians, unsurprisingly, results in decreased SDM engagement. 77 Another provider barrier to implementation of SDM is the reluctance of certain physicians to disclose uncertainty. 80 This may be uncertainty regarding the likelihood of an outcome or complication, the strength of evidence on which that probability is estimated or the extrapolation of population outcomes to the individual. Providers attribute their discomfort to concern that patients might consider them to have inadequate knowledge, that they might appear foolish or that they might lose patients’ trust. 76 While such concerns may appear to be well-founded, a recent qualitative study found that many patients endorsed the notion that “doctors are just people … and there is a lot they don’t know.” 81 Less experienced providers tend to be the most uncomfortable with disclosing uncertainty. 81
Patient perception of provider behavior can also be a barrier to SDM. When interviewed in a qualitative study assessing barriers to SDM, patients who felt disrespected, felt that their concerns were not heard or described their physicians as authoritarian did not wish to participate in SDM. 81 Providers’ disagreement with currently accepted interpretations of available evidence or guidelines, disagreement with presentation of medical information or perception that available tools or DAs are not applicable to a given patient’s clinical situation can also become barriers to the implementation of SDM. 42,74,82 Paradoxically, strong physician agreement with guideline recommendations may also be a barrier to SDM should the physician paternalistically defer SDM in an effort to prevent the patient from making a “bad” decision. 32,71 Such findings are not inconsistent, as physician opinion to either extreme may undermine SDM if the opinion is so extreme as to override the physician’s respect for patient autonomy.
Although most patients want information about their condition and want to be asked about their preferences, some still want their doctor to make the final decision. 73 Such an attitude is a barrier to SDM, as the patient has abdicated control of the final decision; research suggests that long-term satisfaction is lower among such patients. 83 Another important barrier to SDM is some patients’ perception of their own vulnerability and their fear that being assertive might adversely impact their care. 81,84 Such reluctance to question their providers or even guilt at taking up their providers’ time is a problem among patients, regardless of their socioeconomic status. 79,81 Such passivity is a significant barrier to SDM. Another potential barrier is a lack of SDM self-efficacy. Given that these diagnoses are often new and frightening and come with a lot of complicated jargon, patients may not feel they have the knowledge or ability to share in the decision making. 85 Finally, patients often do not anticipate participating in SDM, as it is still uncommon to most clinical encounters. 71 Because there is no expectation of SDM, exclusion of SDM does not prompt a negative reaction from the patient. This lack of expectation becomes a subtle barrier, as physicians may feel no pressure to engage in SDM if patients do not complain about its absence.
Most system-level barriers to implementation of SDM highlight the tension between the efficiency necessary for a large volume of patients and the time and thought necessary to tailor information for specific patients. In order for it to be effective, SDM must be integrated with institutional efforts to improve care for patients with complex diagnoses. Without careful planning, even beneficial care models, such as multidisciplinary clinics, may actually expose patients to a higher likelihood of being influenced by a single-biased provider who may have a bias toward particular management options based on their personal experiences. 73,77 Institutional efficiency targets also may create barriers to SDM, as studies suggest they lead doctors into pressuring patients to make rapid decisions. 42 In an unprepared environment, SDM has the potential to produce significant workflow disruption. 86 A recent study of gastrointestinal physicians found that the lack of ancillary staff time, reimbursement and relevant DAs were perceived as major barriers to SDM implementation in patients with inflammatory bowel disease. 87 Providers feel that SDM quality is best when there is little “time pressure.” 76 Scheduling and distribution of labor among physician and ancillary staff are systems-level issues that must be addressed by an organization seeking to implement SDM in order to facilitate workflow and quality patient care. While a broad consensus of patients, health care providers and politicians advocate implementation of SDM, there is little discussion of where to find the resources necessary to execute it well.
Shared Decision-Making Assessment: Am I Doing it Right?
Proper engagement with and implementation of SDM requires the ability to assess implementation efforts from both the provider and patient perspectives. Unfortunately, the tools for such evaluation are limited. Most studies of SDM employ direct observer methods, 88-90 which are difficult to integrate into routine clinical practice. 91 A recent review of instruments used to assess SDM identified 20 tools, of which 13 were patient-reported, five were observer-based and two employed physician self-report. 34 The two instruments assessing provider perspectives were the Provider Decision Process Assessment Instrument 92 and the Dyadic OPTION Scale. 93 The Provider Decision Process Assessment Instrument is a 12-item questionnaire with demonstrated reliability and construct validity to document a provider’s comfort with a medical decision. 92 The Dyadic OPTION scale is a provider and patient self-reported modification of the observer-based OPTION scale. 90,93 While it is a significant improvement in terms of ease of use, it has not yet been as extensively validated as the Provider Decision Process Assessment Instrument. Additionally, the Decision Support Analysis Tool (DSAT-10) is a freely available resource that evaluates key elements of the SDM process in a checklist format. 94
Providers may choose to evaluate the effectiveness of their implementation efforts by having patients self-report their own decision-making experiences. Of the patient-reported SDM instruments, most measure patient preferences for participation in SDM, self-efficacy and/or decision quality manifest as satisfaction with their decision or decision regret. 34 While processes to collect, collate and report these data for routine clinical use are not yet formalized, physicians can assess the effectiveness of SDM among individual patients whom they have counseled.
Training Urologists to Use Shared Decision Making
SDM is an important component of high-quality health care delivery and future reimbursement models. However, there is a knowledge gap regarding formalized processes for improving the adoption of SDM. The authors of a recent review of interventions to increase provider use of SDM concluded that most studies were of low quality and that the most effective interventions targeted both patients and providers. 32,36 Nevertheless, imminent policy changes, such as those outlined in the ACA, are likely to trial SDM implementation in novel care delivery structures or even mandate its use into routine clinical practice, with or without additional funding to support it. 95,96 Therefore, understanding how to use and document SDM will be important to the practicing urologist.
Given the paucity of actionable interventions to promote SDM, understanding the existing frameworks guiding the education of health care providers may inform urologists interested in implementing SDM. 97 Towle and Godolphin propose competencies that physicians can use as a guide for adopting SDM approaches. These competencies include: 1) developing a partnership with the patient; 2) reviewing patient preferences; 3) reviewing preferences for decision making and identifying decision uncertainty; 4) response to patient concerns; 5) identification of treatment choices; 6) reviewing evidence underlying treatment choices and relevance to patient preferences; 7) resolving conflicts toward a decision; and 8) developing an action plan. Similarly, the conceptual model proposed by Elwyn and colleagues in the development of the OPTION scale can be used to train providers. 90 A provider engaging in SDM should: 1) identify that the clinical situation requires a decision-making process; 2) identify that multiple treatment options are available; 3) elicit patient preferences for decision making and DAs; 4) review the treatment options; 5) review patient expectations and concerns; 6) ensure that the patient understands the information about the health problem; 7) provide explicit opportunities for patient questions; and 8) review the decision or need to defer and review later. The SHARE approach, a similar but shorter process, is described on the AHRQ website. SHARE is a mnemonic consisting of the following steps: 1) Seek your patient's participation; 2) Help your patient explore and compare treatment options; 3) Assess your patient's values and preferences; 4) Reach a decision with your patient; and 5) Evaluate your patient's decision. 98
Incorporating Shared Decision Making into Practice
Research suggests that surgical practitioners need to be more engaged in the SDM process. The authors of a systematic review found that, while thorough in providing details about conditions and treatments, surgeons do not adequately address patients’ emotions or concerns. 99 In a study focused on patients with newly diagnosed prostate cancer, Henry and colleagues noted that urologists focused on the discussion of treatment options, with comparatively little time devoted to the prostate cancer diagnosis itself. 100 It was recommended that providers should elicit patient reaction after diagnosis delivery and explain the decision-making process prior to discussing treatment options. 100
There is no consensus on a unified approach toward implementing SDM techniques across the range of medical practice settings. Légaré and colleagues suggested several steps for SDM practice integration, including educational meetings, providing learning materials and feedback to health care professionals and using patient DAs. 32 A reasonable first step for a given practice might be to evaluate baseline SDM performance by using any evaluation tools described in the above sections. Once gaps in performance have been identified, a training protocol can be developed and DAs can be selected. Finally, it is important to note the cognitive and emotional burden placed on patients who are engaged with DAs. For SDM to occur, health care providers must be properly trained in DA use and need to be willing to allow patients to talk and to have their preferences properly elicited. Providers should also be attentive to varying levels of health literacy and should be willing to direct additional time and resources to patients who have difficulty with medical comprehension and decisional conflict.
Several organizations provide excellent resources for practices and organizations wishing to implement SDM into clinical practice. Health Wise (formerly The Informed Medical Decisions Foundation) provides freely available resources, including organization case studies and implementation checklists. 101 OHRI also provides a five-step implementation toolkit that is driven by identifying decisions suitable for SDM (Figure 1). 41 The University of Washington provides a valuable case study into the different SDM implementation strategies required for various levels of the health care system (organizational, practice, provider and patient targets). 102 Additionally, AHRQ outlines the steps a practice or health system might take to implement SDM into practice. The key activities of the approach include 1) Get leadership buy-in; 2) Develop an implementation team; 3) Select an approach that is tailored to your practice; 4) Provide training and ongoing support to all staff; 5) Start small, then take it to scale; 6) Create a physical setting for SDM; 7) Create a library of evidence-based educational resources and decision aids; 8) Streamline shared decision-making work processes into day-to-day operations; and 9) Evaluate the ongoing implementation of SDM. Patient-centered outcomes research tools and decision support resources are also made available through the AHRQ website. 98
SDM is a collaborative, decision-making process between patients and their health care providers relevant to medical decisions where multiple options are considered clinically acceptable. SDM represents the state of the art in counseling patients faced with difficult or uncertain medical decisions. Its use is encouraged by the Institute of Medicine, the ACA and by AUA guidelines statements, yet SDM is woefully underutilized in clinical practice. The objective of this white paper is to encourage implementation of SDM into routine clinical practice. It outlines the components essential to SDM, the processes by which clinicians can fulfill those criteria (including listing education and evaluation resources) and the processes by which SDM can be implemented on a systems level. Numerous barriers to the implementation of SDM exist but may be overcome by adhering to these processes. This committee strongly endorses that urologists learn about SDM and adopt it into their clinical practice.
- SDM is a collaborative, decision-making process between patients and their health care providers relevant to medical decisions when multiple options are considered clinically acceptable.
- The key elements of SDM include:
- Involvement of both the doctor and the patient in the decision-making process.
- Sharing information by both the doctor and the patient.
- Building consensus through the expression of preferences by both doctor and patient.
- Agreement by both the doctor and patient on the decision to implement.
- SDM represents the state of the art in counseling patients faced with difficult or uncertain medical decisions.
- SDM is underutilized in clinical practice.
- Implementation of SDM into routine clinical practice might involve five key steps, such as the following:
- Seek your patient's participation
- Help your patient explore and compare treatment options
- Assess your patient's values and preferences
- Reach a decision with your patient
- Evaluate your patient's decision 98
Figure 1. Five-step implementation toolkit for SDM. Adapted from the Ottawa Hospital Research Institute Implementation Toolkit. 41
- Wennberg, D. E., Marr, A., Lang, L., O'Malley, S., and Bennett, G. A randomized trial of a telephone care-management strategy. N Engl J Med. 2010; 363 : 1245
- Goldbach, P. From theory to practice: implementing shared decision making at the point of care. Health Dialog Website. 2012. https://www.healthdialog.com/sites/default/files/whitepapers/Shared-Decision-Making-White-Paper.pdf. 2-3-2015
- Katz, S. J. and Hawley, S. The value of sharing treatment decision making with patients: expecting too much? JAMA. 2013; 310 : 1559
- Carter, H. B., Albertsen, P. C., Barry, M. J. et al. Early detection of prostate cancer: AUA Guideline. J Urol. 2013; 190 : 419
- Thompson, I. M., Valicenti, R. K., Albertsen, P. et al. Adjuvant and salvage radiotherapy after prostatectomy: AUA/ASTRO Guideline. J Urol. 2013; 190 : 441
- Cookson, M. S., Roth, B. J., Dahm, P. et al. Castration-resistant prostate cancer: AUA Guideline. J Urol. 2013; 190 : 429
- Donat, S. M., Diaz, M., Bishoff, J. T. et al. Follow-up for clinically localized renal neoplasms: AUA Guideline. J Urol, 190 : 407, 2013
- The Health Foundation. Implementing shared decision making. The Health Foundation Website. 2013. https://www.health.org.uk/publications/implementing-shared-decision-making. 2-3-2015
- Wennberg, J. E. Unwarranted variations in healthcare delivery: implications for academic medical centres. BMJ. 2002; 325 : 961
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