Using Patient Decision Aids for Cardiology Care in Diverse Populations

Abstract

Purpose of Review

Patient decision aids (PDAs) are tools that help guide treatment decisions and support shared decision-making when there is equipoise between treatment options. This review focuses on decision aids that are available to support cardiac treatment options for underrepresented groups.

Recent Findings

PDAs have been developed to support multiple treatment decisions in cardiology related to coronary artery disease, valvular heart disease, cardiac arrhythmias, heart failure, and cholesterol management.

Summary

By considering the unique needs and preferences of diverse populations, PDAs can enhance patient engagement and promote equitable healthcare delivery in cardiology. In this review, we examine the benefits, challenges, and current trends in implementing PDAs, with a focus on improving decision-making processes and outcomes for patients from underrepresented racial and ethnic groups. In addition, the article highlights key considerations when implementing PDAs and potential future directions in the field.

Introduction

Patient decision aids (PDAs) are tools that help patients, healthcare providers, and families make preference-sensitive treatment decisions when there is equipoise between available treatment options [1]. The goal is for PDAs to present balanced, unbiased information about all options, including the risks and benefits of each, using the most up-to-date scientific evidence. By providing comprehensive and unbiased information, decision aids improve knowledge of treatment options, support increased satisfaction with treatment choices, and enable patients to make informed choices that align with their preferences and values [1]. PDAs help patients clarify their values, ask relevant questions, and engage in shared decision-making (SDM) with their healthcare team. They do not replace the essential role of healthcare providers in guiding patients through the decision-making process. Instead, PDAs serve as a supportive tool to help to facilitate meaningful conversations between patients, their families, and healthcare professionals around treatment options that typically include complex medical information (Fig. 1) [2•, 3]. An important function of PDAs is to elicit conscious decision-making around values so that the treatment plan can match the patient’s values and culture, both of which play a significant role in decision-making [4]. Therefore, we dedicate a portion of this review to describing design considerations that ensure that PDAs are effective for patients who have been historically excluded from research on this topic.

Fig. 1.

Steps of a patient decision aid

Benefits of Using PDAs in Diverse Populations

Well-designed PDAs are created to support a patient’s knowledge and understanding of both their condition and their treatment options. They are intended to help to engage the patients in thinking about the treatment decision in advance of the moment of decision with their healthcare provider. When these tools are presented in advance, they allow patients to emotionally and cognitively process the decision and discuss it with others who are important to them. The purpose of a well-designed PDA is not to steer patients in a specific direction with their treatment choice, but to empower patients to make choices that align with their goals and values. The development of PDAs should be done in partnership with patients through focus groups, interviews, and pilot testing. By involving patients in these processes, tailored PDAs align with patients’ levels of health literacy, are provided in modalities of choice (e.g., paper or digital formats) and are culturally congruent.

Underrepresented racial and ethnic groups have been historically excluded from research and have more medical mistrust. In a recent analysis of a racially and ethnically diverse dataset, non-Hispanic Black and Hispanic adults had 73% and 49% higher odds of reporting medical mistrust compared to White adults, respectively [5]. Notably, perceived discrimination has also been associated with medical mistrust. Although the problems associated with medical mistrust among diverse populations stem from structural discrimination, PDAs can play an important role in bridging the health disparity gap. The use of culturally congruent PDAs and shared decision-making can give back a sense of control to underrepresented groups, which can consequently help them be more engaged with their healthcare. If PDAs are not tailored to specific populations, the risk is that tools can be created and used which will later generate inequity [6]. Overall, the goal is to use these tools to help address health disparities and promote health equity. Using culturally congruent PDAs can provide increased knowledge, improved patient-clinician communication as well as reduced decisional conflict among diverse populations [7].

Integrating PDAs into Clinical Practice and Healthcare Systems

Recent advancements in cardiac PDAs have contributed to more inclusive, culturally sensitive, and personalized tools. However, several challenges remain, such as the need for further validation of PDAs in different cultural settings, differential access to PDAs based on access to technology that can further drive disparities, and finally making sure that PDAs are informative, engaging, and user-friendly such that they help the patient arrive at an aligned treatment decision. Logistical barriers, clinician time, lack of reimbursement, and perceived bias in decision aids may all hinder the adoption and implementation of PDAs in practice [8]. Clinician buy-in and belief in a PDA’s value in a particular clinical decision is a critical step to successful adoption [9]. This can be challenging in the context of limited clinician time, variable levels of motivation to adopt the PDA, and implicit biases in which patients may be able to understand and effectively use a PDA [10]. The equitable dissemination of PDAs, cultural tailoring, and ensuring content is accessible across health literacy levels are all critical considerations for implementation in diverse populations. For example, cultural differences may exist in the patient’s preferred role in decision-making, family involvement, beliefs about disease processes and treatment therapies, and emotional expression [11]. To date, some research has shown that when PDAs are equitably adopted and implemented, they have the potential to reduce disparities in treatment outcomes by literacy level, socioeconomic status, and race [12, 13]. However, more work on differences in PDA use and outcomes by social determinants of health are needed [12].

Use Cases for Utilizing PDAs in Cardiology Care

Decision aids can effectively support patients in making healthcare decisions, including those related to cardiology care, while considering multiple needs and preferences [2•]. While there are many decisions in the context of cardiology care that merit decision aids, we highlight five specific cardiac use cases for PDAs for coronary artery disease, valvular heart disease, cardiac arrhythmias, heart failure, and cholesterol management (Table 1).

Table 1.

Cardiac decision aid resources for specific decisions

Cardiac diseases	Specific options	Resources to support the decision
Coronary artery disease	Medical management, percutaneous coronary intervention (PCI), and coronary artery bypass graft (CABG)	https://www.healthwise.net/ohridecisionaid/Content/StdDocument.aspx?DOCHWID=av2037
Valvular heart disease (aortic stenosis and mitral regurgitation)	Surgical valve replacement, transcatheter valve replacement, or watchful waiting	https://patientdecisionaid.org/aortic-stenosis/
Cardiac arrhythmias	Implantable cardioverter defibrillator (ICD), anticoagulation, rhythm, and symptom management in atrial fibrillation, or cardiac resynchronization therapy (CRT), pacemaker implantation, return to play for athletes diagnosed with cardiovascular disease, and genetic testing	https://decisionaid.ohri.ca/AZlist.html https://www.cardiosmart.org/SDM/Decision-Aids/Find-Decision-Aids https://www.healthwise.org/
Heart failure	Beta-blocker use	[14]
Cholesterol management	Statin choice	https://statindecisionaid.mayoclinic.org/

Coronary Artery Disease

A recent study included 203 patients randomized to usual care or a web-based PDA to educate them on coronary artery disease (CAD) [15]. Patients receiving the PDA had improved knowledge compared with patients randomized to usual care and greater interest in actively participating in SDM. The use of PDAs did not impact treatment preferences, potentially, because the PDA did not include individualized risks and benefits or other factors such as social support, financial stress, and anxiety that may limit the influence of PDAs to provide a completely informed preference [15]. In another study, 332 patients were randomized to one of three groups: usual care, PDA without a decision coach, or a PDA with a decision coach to inform the choice of which type of stent to be used during PCI [16]. The highest improvement in knowledge was achieved by coached patients who were also found to be more actively participating in the decision process and likely to express a stent preference compared to patients receiving usual care. There were no differences between patients receiving usual care and patients using the PDA without coaching. The PDAs did not impact stent preference. The implemented PDA was notable for being tailored to each patient’s risk of the need for repeat revascularization.

Several studies have also utilized PDAs within older cardiac populations who were deciding whether or not to get surgery [17]. Paper-based PDAs were the most common form of administration followed by website, video, and CD, with cardiologists and nurses being the most common healthcare providers to use PDAs [17]. Several studies included in this scoping review reported that they administered questionnaires to assess factors including patient knowledge, choice of treatment options, decisional conflict, and quality of the decision process [15, 16, 18, 19].

Overall, PDAs have not been well developed and integrated into clinical practice for cardiothoracic surgery and invasive procedures like PCI [17]. Currently, most of the PDAs used in cardiac surgery are text-based, and less than a quarter are available digitally [17]. Digital PDAs with interactive graphs and simple numbers may be more suitable to convey the information in a direct and clear manner. For future developments of PDAs for patients with CAD, it is important to include individualized risk tailored to patient characteristics for surgery outcomes. For instance, there are multiple options for patients undergoing CABG, including off-pump or on-pump surgery, less invasive (endoscopic and robotic techniques), and conduit choice. All of these surgical techniques impact overall surgical risk and yet patients are often not fully informed about the potential impact on prognosis, including quality of life. PDAs are intended to be used to support patients and family members in making a value-aligned and informed choice between treatments. In most cases, a patient’s choice is based on the provided information in the informed consent by a healthcare professional; however, such a process is strictly related to the benefits and complications related to the procedures and frequently lacks an overall perspective on how the treatment decision will impact both short and long-term quality of life (https://decisionaid.ohri.ca/AZinvent.php).

Valvular Heart Disease (Aortic Stenosis and Mitral Regurgitation)

One of the important decisions for patients with valvular heart disease is the choice of a biological or mechanical valve. Biological valves do not require daily anticoagulation but are at risk of earlier degeneration than mechanical valves. Mechanical valves require therapeutic anticoagulation but typically do not require a repeat surgery. As such, the decision as to the type of valve is largely driven by a patient’s values and lifestyle because both have a major impact on quality of life. The PDA can help guide a patient through the options and subsequent impact. In a pilot study, 35 patients were enrolled and received either usual care or a PDA [18], and the use of the PDA was associated with improved knowledge regarding valve choice and with a better ability to estimate risks accurately. Importantly, the PDA was not associated with either treatment choice, but it did help reduce decisional conflicts.

Cardiac Arrhythmias

Patients with cardiac arrhythmias often need to decide whether, and how, to prevent adverse events of the arrhythmia. For example, for patients at high risk of sudden cardiac death considering ICD implantation for primary prevention [20], PDAs can help patients consider the many risks and benefits of ICD implantation for primary prevention. ICDs show a significant mortality benefit, but not a quality of life or symptom improvement benefit, making a patient’s goals of care a critical deciding factor. Research shows this decision forces patients with progressive or terminal conditions to weigh whether to extend their life by preventing lethal ventricular arrhythmias while accepting a death due to another cause or to accept the possibility of peacefully passing away in one’s sleep due to a lethal arrhythmia [21]. Centers for Medicare and Medicaid Services (CMS) has also mandated the use of shared decision-making as a condition for reimbursement for ICD implantation. One survey showed that after this mandate 88% of physicians reported engaging in shared decision-making with patients [22]. An example of a high quality PDA has been developed by the University of Colorado and widely used for these discussions (Table 1; Fig. 2). Other examples of PDAs for ICD implantation are available through the Ottawa Hospital and the American College of Cardiology. However, experts have also called for more research into this area [10], particularly because of noted differences in perceptions of ICDs by gender and race [22, 23].

Fig. 2.

The University of Colorado’s patient decision aid for getting an implantable cardioverter-defibrillator (ICD).https://patientdecisionaid.org/icd/. Used with permission from the University of Colorado

Another major area of focus has been selecting an anticoagulant for patients who have a high stroke risk due to atrial fibrillation (AF). PDAs can help patients consider the risks and benefits of warfarin, direct oral anticoagulants, a left atrial appendage closure, or no therapy at all. Moreover, two other issues include suboptimal anticoagulant prescription rates (only 55–70% of patients with high stroke risk are prescribed an anticoagulant) [24] and low adherence rates (less than half of patients remain on anticoagulants after 1 year) [25]. Because treatment burden may differ by gender, age, treatment type, and type of AF [26], PDAs are important tools to help align treatment choices with goals and priorities for individual patients.

The CMS has mandated that healthcare professionals engage in SDM around anticoagulation decisions for AF patients with high stroke risk [27] as a condition for reimbursement. It is also a class 1 recommendation from the American College of Cardiology, American Heart Association, and Heart Rhythm Society (ACC/AHA/HRS). This has generated new research on this topic in recent years, with a number of PDAs currently available (Table 1). Thus far, one randomized controlled trial of an anticoagulation-focused PDA, the Shared Decision Making for Atrial Fibrillation (SDM4AFib) trial [28] recruited 922 patients to evaluate a PDA versus usual care. The trial reported that patient involvement and clinician satisfaction were significantly higher in the PDA arm, but no significant differences in treatment decisions or encounter durations were found [29]. Further research, evaluating whether anticoagulation-focused PDAs improve treatment rates, decision quality, and long-term adherence and clinical outcomes, is needed.

One area that has been understudied is determining an AF rhythm and symptom control strategy. In practice, the decision to undergo catheter ablation to treat AF requires a nuanced evaluation of its risks and benefits and they are not curative for a significant proportion of AF patients. Yet, at the same time, AF symptoms may independently improve after ablation [30, 31]. In fact, relief of symptoms is one of the primary indications for performing an ablation. Additionally, patients feel symptom reduction represents success for an ablation, regardless of the effect on rhythm control [32]. However, despite patients and clinicians agreeing that PDAs focused on AF rhythm and symptom management are needed [33], they have yet to be well explored [34]. One PDA exists to address ablations and rhythm/symptom control in AF [35] but is heavily text-focused and may not be accessible to those with low literacy, health literacy, and numeracy levels. Therefore, more work is needed to support this important decision. Experts have identified other important areas for SDM, including cardiac resynchronization therapy, pacemaker implantation, return to play for athletes diagnosed with cardiovascular disease, and genetic testing for patients with suspected inherited arrhythmias or cardiomyopathies [10].

Cholesterol Management

The use of statins (or HMG Co-A reductase inhibitors) is vital in the management of cholesterol and the reduction of cardiovascular events. In a recent study assessing participants’ preferences for statin therapy, the risk of cardiovascular disease was associated with an increase in statin therapy [36]. PDAs for statin therapy can help patients understand whether statin therapy is the right choice for them. It is vital to ensure that diverse populations are recruited in the development and testing of PDAs for statin, particularly due to the existing racial and ethnic differences in treatment recommendations for patients with high cholesterol. Using a representative sample from the National Health and Nutrition Examination Survey (N = 4846), Bacon (2021) found that, compared to non-Hispanic White patients, non-Hispanic Black and Hispanic patients with high cholesterol were significantly more likely to receive recommendations for lifestyle changes. A similar pattern was observed using a representative sample from the National Ambulatory Medical Care Survey (N = 12,113) [37].

Heart Failure and Medication Management

Medication management among adults with heart failure can be challenging, given the need to balance the potential benefits of guideline-directed medication therapy (GDMT) with the potential risks of polypharmacy [38, 39]. Leveraging patient-reported outcomes to better understand how patients feel on and off various medications may be an important strategy to help optimize medication regimens. PDS tools (such as that shown in Fig. 3) could assist with conveying data to patients on how patients feel when they take a medication and how they feel when they stop a medication. Sharing such data with patients has the potential to facilitate shared decision-making to optimize medication regimens. Along these lines, there is ongoing work using the N-of-1 design trial (coupled with a PDS) to compare how patients with heart failure with preserved ejection fraction feel on and off beta-blocker [14]. Future work examining the role of PDS and/or N-of-1 trials to maximize patient-centered medication management in adults with heart failure (and perhaps other cardiovascular conditions) could represent a future disruptive innovation that maximizes patient-centered care and helps to reconcile the risks and benefits of polypharmacy in adults with cardiovascular disease.

Fig. 3.

Patient decision aid for the use of beta-blocker medication

The Importance of PDA Design

The process of communicating information and eliciting values needs to consider the intersectionality of social disadvantages, inclusive design, organizational health literacy, and health numeracy (Table 2). Patients may have various needs to consider when designing appropriate PDAs. An inclusive design lens may guide these scenarios [44]. For those that it may not be possible to reasonably accommodate with a given design, a specialized design should be created. Moreover, recognizing the impact of culture on health beliefs and practices, PDAs should have a content that can be adapted and presented to align with the target population. For example, the PDAs should be available in multiple languages and include culturally appropriate visuals and narratives [4]. PDAs should also be written in plain language, avoiding technical jargon or complex terminology to facilitate understanding of the provided information [45]. Some PDAs have become very personalized by including patient-specific information (e.g., demographic data, medical history, and genetic information) and tailoring the presentation of treatment options accordingly [46]. In the sections that follow, we provide a brief description of the specific design considerations that are important for diverse populations.

Table 2.

Key terms

Term	Definition
Intersectionality	Interconnected nature of social categorizations such as race, class, and gender as they apply to a given individual or group, regarded as creating overlapping and interdependent systems of discrimination or disadvantage [40]
Inclusive design	The design of mainstream products and/or services that are accessible to, and usable by, as many people as reasonably possible [41]
Organizational health literacy	The degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others [42]
Health numeracy	Ability to interpret and apply quantitative information to make informed decisions, access appropriate healthcare, and participate in self-management [43]

Inclusive Information Design

Creating effective PDAs requires conscious efforts to consider challenges that low health literacy and low numeracy populations can encounter. Low health literacy and low numeracy are prevalent across most countries and are more common among groups who may already need additional special considerations [47, 48]. International communities recognize that PDAs should be comprehendible across all levels of health literacy such that inclusive design-oriented guidelines have been developed, such as the International Patient Decision Aid Standards (IPDAS) [49••]. For instance, IPDAS criteria include having text written at an eighth grade equivalent or less, limiting the use of medical jargon, and including different formats other than reading (i.e., illustrated text, audio, and video) in PDAs [50]. PDAs used to address low health literacy have most commonly focused on including computerized or web-based multimedia containing interactive learning modules, which previous studies have also found are preferred by patients with low health literacy [51].

Currently, there is a recognized lack of comprehensive guidance related to inclusive design of health numbers to address health numeracy challenges [52]. However, the IPDAS guidelines involved a series of best practices for presenting probabilities, such as discouraging the risk of verbal-only risks (e.g., rare and common), recommending the use of common denominators (e.g., 5-in-100 vs. 10-in-100 instead 1-in-20 vs. 1-in-10), the use of evaluative labels in addition to numbers as appropriate (e.g., below average/above average), and using appropriate graphics, such as icon arrays, to convey risks to broad audiences with varying levels of comfort with numbers [53, 54].

Culturally and Linguistically Appropriate Design

Designing respectful, inclusive PDAs involves considering a patient’s culture as well as language needs and preferences. Culture may involve aspects of one’s race, ethnicity, place of origin, or relevant norms or values they feel define them. Cultural inclusiveness for PDAs helps to reduce disparities in health outcomes by increasing personal relevance and improving communication between treatment decision makers [4]. The National Standards for Culturally and Linguistic Appropriate Services provides guidance with specific implementation steps to incorporate into health care services to ensure designs are tailored to culturally and linguistically diverse backgrounds [55]. Alden and colleagues propose a two-stage framework incorporating cultural concepts into the design process for screening and treatment of PDAs supported by four key theories [56]. The first stage is cultural congruence at the group level by two core cultural concepts, individualism versus collectivism, two of the strongest moderators of understanding and processing health-related information [57]. Established cognitive psychology theory suggests that by incorporating cultural congruence, including specific language and colors, the PDA will be more effective because people tend to access similar cultural and mental schema with fairly consistent response patterns [58–60]. For example, Western-oriented PDAs may tend to use red-yellow-green color schemes to represent high, medium, and low in ways that may not resonate well with Eastern norms and values. Additional theories suggest that higher interdependence achieves higher processing when fluency potential gains are emphasized. Overall, when PDAs match cultural mindsets, they may support higher engagement and processing fluency. Lastly, individuals have varied responses to how their cultural experiences affect their beliefs and behavior [61], and depending on the cultural mindset when a judgment is made, it can be interpreted as dishonest or kind, assertive or aggressive [62]. This signifies that patients should have the ability to choose to use culturally tailored interfaces or not, and the tailoring should be created in a participatory manner with those originating from a given culture so the designs feel genuine rather than performative.

Universal Access Considerations

The persistent digital divide among economically disadvantaged households highlights barriers to access and connectivity. Specifically, 24% of households with incomes below $30,000 do not own a smartphone; 43% do not have home broadband service; and 41% do not have a desktop or laptop computer [63]. To mitigate these issues, it is helpful to provide access to digital PDAs in clinics, so those with limited device or internet access may utilize them when seeking care. In addition, paper options of the tool should be available, not only for those who have lower digital access but also for those who may prefer not to engage with digital technologies.

Overarching Best Practices

Very few studies report the theoretical frameworks used to develop the PDA, or do they include patients as partners in their development. PDA design research should include both literacy and numeracy experts as well as representative participants with various levels of literacy or numeracy in the development and pilot testing of their PDAs to ensure they can easily be understood [64]. In addition, if a PDA is translated into multiple languages, it should be tested and evaluated by focus groups, so the intended meaning is understood. When developed with patients, the process for the PDA developed should be reported to ensure that target communities have been represented in the development and to help others who are developing PDAs think through the issues that are most relevant to specific diverse populations.

We recognize tailoring PDAs for every culture, and the situation is not feasible. Therefore, it is important for practitioners to understand the populations they serve in order to prioritize what type of tailoring may be necessary. The vast diversity of US and other communities, however, underscores the importance of being able to share well-developed, culturally-tailored PDAs, so that areas that may not have the resources to assess tailoring for a particular culture, may adapt a PDA that has been created by others. Table 3 presents a list of resources to support inclusive design of PDAs.

Table 3.

Decision aid resources

Resource	Description	Link and references
IPDAS Decision aid inclusion checklist and recommendations	Provides a set of criteria to determine the quality of decision aids and guidance on aspects of design and development. The checklist provides valuable guidance on various aspects of decision aid development, including content, disclosure of conflicts of interest, evidence presentation, and evaluation	http://ipdas.ohri.ca/ipdas_checklist.pdf [65, 66] https://journals.sagepub.eom/toc/mdma/41/7
The SHARE approach: a model for shared decision-making	Includes five steps healthcare professionals can take to implement shared decision-making with patients (Agency for Healthcare Research and Quality)	https://www.ahrq.gov/health-literacy/professional-training/shared-decision/tool/resource-2.html [67]
SHARE approach: tool 7	Provides guidance to help healthcare professionals consider cultural differences during shared decision-making	https://www.ahrq.gov/sites/default/files/wysiwyg/professionals/education/curriculum-tools/shareddecision-making/tools/tool-7/share-tool7.pdf
Advance Care Planning (ACP) decisions	Provides guidance for shared decision-making around serious illnesses. This resource has the benefits of being based on evidence-based research, being available in 20 +languages, culturally and racially inclusive, designed for multiple health literacy levels	https://www.acpdecisions.org [68]
Colorado Program for Patient-Centered Decisions	Provides certified decision aids for various health conditions including cardiac conditions, stroke, and dementia	https://patientdecisionaid.org/
Ottawa Hospital Research Institute Decision Aids Inventory	Provides an alphabetical list of certified decision aids by health topic	https://decisionaid.ohri.ca/azinvent.php
The Mayo Clinic Shared Decision Making National Resource Center	Provides decision aids for several specific health conditions	https://carethatfits.org/shared-decision-making/ [69]
CDC’s Clear Communication Index	Provides further resources for inclusively designing health information materials	https://www.cdc.gov/ccindex/index.html
Agency for Healthcare Research and Quality’s Universal Precautions Toolkit		https://www.ahrq.gov/health-literacy/improve/precautions/index.html

Conclusions

In this review paper, we explored the utilization of PDAs in cardiology care, the benefits, and challenges of implementing PDAs, and resources such as patientdecisionaid.org and the Ottawa Hospital Research Institute Decision Aids Inventory. PDAs have been shown to enhance patient-reported outcomes (PROs) among socially-disadvantaged populations and have been beneficial for individuals facing social disadvantages in their healthcare decisions [7]. PDAs can improve knowledge levels, enhance patient-clinician communication, and increase the likelihood of receiving a screening test. PDAs have also been effective in reducing decisional conflict and decreasing the number of individuals who remain undecided about their healthcare choices. Additionally, recent research suggests that PDAs have an influence on treatment decisions among these disadvantaged populations [7]. These findings emphasize the value of PDAs in supporting informed decision-making and improving outcomes for this population. By considering the unique needs and preferences of diverse populations, PDAs have the potential to enhance patient engagement and promote equitable healthcare delivery in the field of cardiology.