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Neurology is inherently patient-centered given that clinical uncertainty is common, forcing physicians, patients, and families to partner on treatment approach. An increasing emphasis on patient-centered care, patient engagement, and shared decision-making (SDM) in health care provides neurologists with an opportunity to reassess current clinical approaches to decision-making. Such assessment is not simply theoretical but has clear practice implications, with patients indicating a desire for SDM and calls for reimbursement to be tied to demonstration of SDM in practice. We present a framework for how neurologists enhance patient-centered practice by (1) eliciting patients' values and goals, (2) targeting discussion of clinical options to those values and goals, and (3) partnering with patients to make individualized decisions. We also highlight resources that facilitate SDM and examples of SDM in neurology clinical practice.
Patient-centered care, patient engagement, and shared decision-making (SDM) are increasingly referenced terms in medical literature and lay health care discussions. We discuss patient-centered concepts relating to neurology outpatient settings.
The 2001 Institute of Medicine report “Crossing the Quality Chasm”1 is most commonly cited as bringing SDM to the forefront in American medicine. It highlighted patient-centeredness as one of 6 aims for improving high-quality health care delivery, where patient-centered care is respectful and responsive to individual preferences, needs, and values and patient values guide clinical decisions.1 SDM is now described as “the pinnacle of patient-centered care.”2 SDM reflects collaboration between patients and physicians, which considers patients' values and preferences alongside evidence to make the best decisions. Patient engagement describes meaningful patient involvement in different aspects of care including research, guideline development, and clinical encounters.
While research to date fails to demonstrate a clear effect of SDM on health outcomes,3 the foundations underpinning patient-centered care and SDM are more ethical ones, emphasizing the principles of autonomy and self-determination and the importance of patients achieving these ideals with physician assistance. Autonomy and self-determination have particular weight in neurology, where clinical uncertainty is common. There is rarely a right answer for neurologic decisions, emphasizing the importance of patients choosing the best option based on individual values and goals. For example, patients with multiple sclerosis and their physicians now have treatment options with considerations to weigh beyond efficacy, e.g., mechanism of administration, cost, and side effect profile. The value that individuals place on these considerations will differ.
Beyond the ethical mandate, there are practical reasons to perform SDM. Research suggests that most patients want to actively participate in decision-making.4,5 SDM is also highlighted in the Affordable Care Act, which mandates programs to develop, evaluate, and disseminate decision aids (DAs) that enhance SDM. Some propose that the Centers for Medicare and Medicaid Services certify and implement DAs and tie reimbursement to use of these DAs and SDM documentation.6
DAs are tools that (1) state the decision, (2) provide evidence about potential benefits, harms, and probabilities associated with different options, and (3) guide individuals through recognizing values that inform the decision.7 DAs are not stand-alone patient tools, but rather provide a framework for physicians to guide patients through decision-making. A Cochrane review found that DAs increased knowledge, lowered patients' decisional conflict stemming from feeling uniformed, reduced patient passivity in decision-making and the number of patients unable to decide, and resulted in more decisions for less aggressive care.7 General studies of patient-centered care and SDM show positive benefits on knowledge, satisfaction, and self-management with mixed results for clinical outcomes.3,8
In our model for patient engagement in clinical visits (figure), each participant has a role in addressing the steps of SDM.
The framework includes 3 steps requiring physician action, similar to other models.9 Step 1: Physicians solicit patients' values and goals. While SDM literature often focuses on the interplay between physicians and patients addressing pros and cons of health care decisions, SDM is likely best achieved when physicians know a patient's values and goals and frame decisions in that context (table 1). Step 2: Physicians present the evidence behind health care decisions as it relates to the patient's values/goals. Physicians help patients understand how an intervention may help them achieve their goals (e.g., through symptom treatment) or how it might put goals at risk (e.g., through side effects). Step 3: Patients and physicians reach a final decision based on discussions of evidence alongside patients' values/goals.
Patients provide personal values and goals, informing the evidence-based discussions (step 1). They listen to options and related pros and cons presented by physicians (step 2). Ultimately, patients make the best decision for their personal situation (step 3). While not all patients desire to fully engage at each step—discussed further below—most patients desire SDM.4,5
Both carepartners—family members or friends partnering in care based on existing relationship (e.g., marriage) without implying a need for assistance—and caregivers—individuals who provide assistance because of a patient's physical or cognitive limitations—have SDM roles. Patients and carepartners may share values and goals (e.g., providing for children, retirement planning) in addition to more patient-specific goals (e.g., improvement in pain) (step 1). Carepartners often have established roles in helping patients weigh pros and cons (step 2) and make major decisions (step 3). Research suggests that individuals with lower education levels may particularly rely on carepartners to assist with SDM.10 In caregiving, particularly in the context of advanced cognitive impairment, caregivers are the patient's voice. They identify the patient's previously stated goals (step 1), weigh evidence on the patient's behalf (step 2), and suggest what the patient would want if able to decide (step 3).
Even in studies where patients desire SDM participation, some prefer physicians to make final decisions.5 Rather than absolving physicians of SDM, however, patient reliance on physician decisions increases the need for solicitation of patients' values and goals. In this way, physicians still successfully engage patients in decision-making. If an older patient wants to remain at home but declines to make a specific clinical decision, the physician might say, “Today we discussed new medicines that could help your symptoms, but likely only a small amount. It sounds like you want keep living alone without help from your children. It might be easier for you to manage on your own if we don't add another medicine. How do you feel about that?” Here the physician engages the patient through eliciting his or her values/goals (independence, living alone without assistance) and targets the decision to those values/goals even when the patient declines to make the decision.
With direct-to-consumer advertising and patient Internet research, physicians face requests for tests or treatments in situations where there may be near-certainty that the request is not an appropriate approach (e.g., situations targeted by Choosing Wisely11). Physicians can use SDM to help patients understand why the requested approach does not fit the circumstance and how it will not further stated goals. In some cases, patients' preferences may be at odds with the evidence. SDM is not an easy answer in these challenging situations, but it provides an opportunity for strategies to correct misinformation.12
Many physicians perform SDM without calling it by name. A study of rural physicians found that 65% were unfamiliar with the term SDM, but 97% described using that approach.13 Conversely, one survey reported that 40%–50% of patient respondents indicated a desire for increased involvement in treatment decisions,14 suggesting that physicians may not be doing as well as they think. This likely reflects the fact that SDM performance is not a “yes” or “no” consideration, but a spectrum where physicians follow the framework to varying degrees.
Barriers to SDM include lack of familiarity and experience with SDM, physician and patient attitudes towards SDM, physician knowledge regarding evidence, lack of resources, and time.15 Health literacy—the skill needed to access, understand, and use information to promote one's health—can also impact SDM,16 with many individuals lacking understanding of probabilities commonly cited in health care decisions.17 SDM tools can address some of these barriers such as lack of knowledge, training, resources, time, and health literacy. Lack of time is a commonly described barrier,18 though the Cochrane review found DA use increased consultation length by a median of only 2.55 minutes7 and other research showed no increased appointment time from SDM.18
Option Grids19 allow physicians to develop personalized SDM outlines for decisions commonly encountered in their own practice. Prefilled Option Grids exist for some neurologic decisions, e.g., regarding surgery for hippocampal sclerosis in temporal lobe epilepsy.20 Clinical practice guidelines help physicians describe the evidence for different decisions (table 2). Each American Academy of Neurology (AAN) guideline is accompanied by a patient/family summary that can be shared within SDM, though these are not formal DAs. The AAN also has a variety of downloadable SDM tools (www.aan.com/practice/patient-engagement/). The 74 neurology-related Choosing Wisely recommendations can help neurologists explain when a test or treatment is unlikely to help.21 Organizations such as the Agency for Healthcare Research and Quality and Mayo Clinic's Center for Innovation develop more formal DAs with a particular emphasis on presenting infographics to represent risks, but few of these address neurologic topics. While tools help facilitate SDM, SDM can be achieved through discussion alone (e.g., table 1).
There is an increasing emphasis on SDM that enables patients to make informed individualized health decisions targeting personal values and goals. Neurologists can adopt enhanced patient-centered practices by eliciting patients' values and goals, targeting discussion of evidence and options to those values/goals, and partnering with patients to collaboratively develop treatment plans. How SDM affects health outcomes, though, remains uncertain and research is ongoing. There is clear evidence that patients desire SDM; it is likely that calls for SDM will only increase in coming years.
M.J.A.: design/conceptualization of manuscript, analysis/interpretation of concepts, drafting of manuscript, revision of manuscript. L.M.S.: analysis/interpretation of concepts, revision of manuscript. J.V.: analysis/interpretation of concepts, revision of manuscript. C.D.M.: analysis/interpretation of concepts, revision of manuscript.
M.J.A. is supported by an ARHQ K08 career development award (K08HS24159-01) and this manuscript was developed through that support.
M.J. Armstrong has received honoraria from International Parkinson and Movement Disorder Society and American Academy of Neurology; serves on the Level of Evidence Editorial Board for Neurology; receives publishing royalties for Parkinson's Disease Improving Patient Care (Oxford University Press, 2014); serves as an Evidence-Based Medicine Methodology Consultant for American Academy of Neurology; and receives research support from Abbvie, Insightec, ARHQ, NIH, University of Maryland School of Medicine, Parkinson Study Group, Huntington Study Group, and CHDI Foundation. L.M. Shulman serves as Editor-in-Chief of the AAN Neurology Now Patient Book Series and on the editorial advisory board of Neurology Now; receives publishing royalties for Parkinson's Disease: A Complete Guide for Patients and Families, Johns Hopkins University Press: 2000, 2007, 2013; and receives research support from Kyowa Pharmaceuticals, Biotie, NIH, Michael J. Fox Foundation for Parkinson's Research, and The Rosalyn Newman Foundation. J. Vandigo receives research support from AHRQ. C.D. Mullins serves on scientific advisory boards and as a consultant for Bayer, Mundipharma, and Pfizer; serves on the speakers' bureau for Pfizer; and receives research support from Bayer, Novartis, Pfizer, AHRQ, NHLBI, and PCORI. Full disclosure form information provided by the authors is available with the full text of this article at Neurology.org/cp.