Introduction to training patients to reach their communication goals
As the volume of literature in this book suggests, improving clinicians’ communication is currently the subject of much scholarship throughout the world. Improving clinicians’ communication is necessary, but on its own is not sufficient to achieve the best possible communication in a clinical encounter. This chapter focuses on an area that has received less attention—training patients to be good communicators. The physician–patient interaction is a dynamic, socially-constructed, and reciprocal process (Parker et al. 2005; Street 2003) that relies on at least two participants. Effective communication requires both parties to be actively involved and competent communicators. Moreover, patients’ communication may influence physicians’ responses (Roter et al. 1997). Thus, to fully understand and improve physician–patient communication requires a focus on both sides of the interaction.
Such a focus is particularly important given that patients face many challenges in their clinical consultations, including physicians’ ethnic or cultural biases (Street 2003), interruptions (Marvel et al. 1999), lack of empathic communication (Bylund and Makoul 2005), minimal tolerance for patients’ desires to talk about internet information (Street 2003), and a lack of physician–patient concordance (Chewning and Wiederholt 2003; Parker et al. 2005). Despite the research and teaching efforts that have gone into physician training, patient communication training must also be addressed in order to achieve optimal physician–patient communication. Considerable research has indicated that there is room for improvement in patients’ communication skills, including asking questions (Brown et al. 2001), explicitly stating concerns (Butow et al. 2002), and verifying information (Cegala et al. 2000b). The ineffective use of these skills may contribute to patients’ misunderstanding of information given to them (Cegala et al. 2000b) and/or lack of treatment adherence (Golin et al. 1996).
This chapter begins with a review of studies of patient communication training. We then move to an explanation of the concept of concordance in the physician–patient relationship and how concordance provides a fruitful conceptual grounding for patient communication training.
Review of patient communication training studies
Published studies on patient communication training in the cancer setting are sparse. Consequently, we have chosen to review literature on patient communication training more broadly. Patient communication training studies differ in both method and content of training, as well as reported outcomes.
Method of training
We have expanded upon the definition of Parker and colleagues (Parker et al. 2005) in describing the methods of patient communication training. The three methods of training present in the literature are materials only, materials plus coaching, and group-based interventions.
Materials-only communication interventions include those in which patients are given written materials to use on their own. Such methods usually include the use of question prompt lists, which have been shown to increase the number of questions patients ask their oncologist, particularly around the topics of tests, treatment, and prognosis (Brown et al. 1999; Brown et al. 2001). Since question prompt lists are comprehensively reviewed elsewhere, they will not be covered in detail here. The most widely used patient communication skills curriculum was developed by Cegala and colleagues (Cegala et al. 2000a; Cegala et al. 2000b). Initially designed as an educational booklet, the PACE System expanded the focus of materials-only interventions beyond just asking questions and has been used in several empirical studies (Cegala et al. 2000a; Cegala et al. 2000b; Cegala et al. 2001; Post et al. 2001). Katz et al. (2012) evaluated an educational video intervention to facilitate colorectal cancer screening discussions and adherence in low-income minority patients. Entitled Ask your doctor about colon cancer screening, the 12-minute video was supplemented by two brochures and included the PACE curriculum. More recently, Meropol et al. (2013) incorporated the PACE curriculum into an interactive web-based communication aid for cancer patients. Details regarding content of the PACE System will be discussed below.
Materials plus coaching
The second type of intervention category is materials plus coaching. This method involves the use of a one-on-one intervention in which a researcher interacts directly with a patient to discuss specific communication strategies or skills that can be used during consultations. Such methods may utilize some elements described in materials-only interventions (e.g. question prompt sheets), but differ in that they also include a component of rehearsal or coaching (Parker et al. 2005).
Cegala and colleagues have tested an intervention comparing patients receiving the PACE System booklet with patients who received the booklet and also had individual coaching (Cegala et al. 2001; Cegala et al. 2000a; Cegala et al. 2000b; Post et al. 2001). The coaching process involved asking patients if they experienced any problems using the training booklet, going over the booklet page by page, and helping patients organize how they would approach the consultation (Cegala et al. 2001).
Street et al. (2010) conducted a randomized controlled trial evaluating a tailored education-coaching intervention designed to assist cancer patients in discussing pain-related questions, concerns, and preferences with physicians. Each intervention patient met with a trained health educator for 20 to 40 minutes prior to their scheduled oncology visit and received a set of individualized messages and skill-building exercises. Patients randomized to the enhanced usual care arm met with a health educator to review educational materials on pain control.
Bylund et al. (2011) piloted a workshop aimed at improving healthcare communication skills in a minority cancer patient population. The communication skills training workshops were delivered to patients by the lead author, a communication specialist, on-site at a community-based oncology clinic. Each face-to-face workshop consisted of a 20 to 30 minute didactic presentation and open discussion with video clips demonstrating communication skills. Control group participants completed surveys only.
The third patient communication intervention method found in the literature is group-based interventions. To follow, we summarize four articles that have described the development and evaluation of such group-based interventions.
Within an oncology setting, Fisch and colleagues (2003) conducted a one-day workshop called My Life, My Choice, held to educate cancer patients and family members about improving communication with their cancer care providers. The eight-hour workshop made use of a combination of lectures, as well as both large and small group discussions facilitated by healthcare professionals.
Other group-based interventions have been open to individuals beyond cancer. Tran and colleagues (2004) described a community education forum aimed at improving active patient communication. Entitled How to Talk to Your Physician, the two-hour programme was presented by a physician and non-physician, in an effort to establish the collaborative nature of the physician–patient interaction. Towle and colleagues (2003) designed and implemented interactive workshops for seniors at a community centre with the goal of promoting active participation in consultations. The workshops were about two hours in duration and involved participants receiving a booklet of communication skills, which were then modelled by simulated physicians and patients.
Peek and colleagues (2012) tested a ten-session, culturally-tailored patient empowerment intervention for low-income African American patients with diabetes. Lasting approximately 90 minutes each, weekly sessions included a variety of interactive educational components, including group discussions, role play, individual testimonies, and more.
Content of training
Many patient communication interventions focus almost exclusively on patient question asking. Although asking questions is critically important to effective physician–patient communication, other interventions have included a more comprehensive range of skills.
The PACE System, developed by Cegala (Cegala et al. 2000a; Cegala et al. 2000b), proposes that effective patient communication involves four components: Presenting Detailed Information; Asking Questions; Checking Understanding; and Expressing Concerns. Presenting Detailed Information involves being prepared before the consultation to give a focused and extensive breadth of information about symptoms, history, reasons for visit, needs, etc. Asking Questions pertains to having a preset list of questions prepared that will deepen understanding of any information, treatments, tests, or diagnoses that may be presented in the consultation. Checking Understanding is a form of information verification, and can involve skills such as asking the physician to clarify information that is unclear, repeating aloud the information that is provided to improve retention, and summarizing the information back to the physician in order to check understanding. Finally, Expressing Concerns aims to bring to light any conflicts or concerns (e.g. religious, cultural) that may hinder treatment or the physician–patient interaction. Through open expression of these concerns, a mutual effort of resolution can be reached.
The PACE System has been included in a number of patient communication interventions. For example, Towle and colleagues (2003) used Cegala’s PACE curriculum in their group-based workshops for seniors. The PACE System was also incorporated into a colorectal cancer screening video intervention (Katz et al. 2012). The educational video included physicians describing facts about colorectal cancer and the importance of screening. The informational section was followed by a narrative portion that focused on communication skills and offered patient testimonials to reinforce the importance of completing screening tests. In addition to viewing the 12-minute video, intervention participants received a brochure that focused on asking their provider for a colorectal cancer screening test.
Other research studies have adapted the PACE System. Cegala et al. (2013) altered the PACE curriculum, keying content to suit an intervention for parents of paediatric surgery patients. Meropol et al. (2013) adapted the PACE System in designing a theory-guided, interactive web-based communication aid for cancer patients. Referred to as CONNECT, this communication aid includes an assessment of patient values, goals, and communication preferences, a communication skills training component, and a pre-consultation summary report for physicians.
Bylund et al. (2011) built upon the PACE System, incorporating a fifth communication strategy focusing on Stating Preferences concerning communication, treatment, and role responsibilities in decision-making. This communication skill allows each patient to take an active role in shaping the dynamic of the physician–patient relationship and flow of information.
A different patient communication training curriculum was designed and utilized by Fisch and colleagues (2003). The community-based workshop for cancer patients and their families was divided into three sessions. Session one was entitled Getting Through the Diagnosis/Prognosis Phase and involved presentation of skills relevant to reviewing healthcare insurance, choosing the right physician, and slowing down to verify diagnosis, seek second opinions, and clarify information. Session two, Exploring Treatment Options, consisted of informing patients of barriers to understanding and then skills training to overcome them. Often problems such as being flooded with information, losing a sense of control within a consultation, and unfamiliar jargon can hinder understanding. This session helped inform patients of such issues that they may not be aware of, as well as teaching skills like asking questions and bringing support to visits. Furthermore, this session also aimed to expand patients’ knowledge regarding the importance of exploring treatment options. Finally, session three, Asking the Difficult Questions, focused on dealing with terminal illness and death. Patients were provided with information regarding emotional responses they may encounter, coping strategies, informing loved ones, preparing for death, and self-assessment of faith, life, and final goals.
Another patient communication training curriculum has been developed and used in community educational forums (Tran et al. 2004). Each forum involved attendees receiving a 20-page orientation guidebook and engaging in an interactive discussion facilitated by co-educators, including trigger videos, provocative questions about physician–patient interactions, and suggestions for improving communication. Most relevant to effective patient communication training are the tips for improving patient/physician communication. These are similar to Cegala’s concept of PACE, and use an ‘ABC’ mnemonic to improve recall: Asking questions to receive information, Being prepared for each visit, and expressing one’s Concerns.
The tailored education-coaching intervention offered by Street et al. (2010) included several components designed to increase self-efficacy, enhance physician–patient communication, and improve care of cancer-related pain. Patients met with a health educator who provided each patient with a copy of the National Cancer Institute’s booklet Pain Control: A Guide for Patients with Cancer and their Families; examined current knowledge, attitudes, and preferences regarding pain management; corrected misconceptions about cancer pain control; taught relevant pain control concepts and communication skills (e.g. asking questions, expressing concerns, stating opinions and preferences); guided planning (e.g. identifying goals, matching effective strategies); and facilitated the development of a list of questions and concerns about pain. Patients were also offered the opportunity to role play.
Finally, the culturally-tailored patient empowerment intervention developed by Peek et al. (2012) included three content areas addressed across ten sessions. The first six class sessions consisted of general diabetes education and self-management skills, including disease-related information and dietary/nutrition choices. Patients participated in several experiential exercises. For example, a mock grocery store was created, allowing patients an opportunity to practice food choice and lifestyle skills. The next three sessions focused on shared decision-making and physician–patient communication. These sessions addressed perceived barriers, behavioural beliefs, and subjective norms around decision-making, as well as covering communication and negotiation skills (e.g. asking more questions, providing more details). The final session provided an opportunity to review materials and practice self-care, shared decision-making, and communication skills.
Outcomes of patient communication training
With few comprehensive patient communication training programmes published to date, our report on outcomes is limited. The outcomes reported in these studies can be divided into several categories, including patient self-efficacy, behavioural intention, patient satisfaction, observations of patient skill usage, and adherence.
One simple outcome that can be assessed is how the communication training affected patients’ self-efficacy. Results of the community education forum described by Tran et al. (2004) indicated that participants’ confidence in their ability to communicate effectively with their physician increased. Bylund et al. (2011) observed that workshop participants demonstrated significant improvements on a measure of healthcare communication behaviour. Specifically, patients who completed the intervention showed increases in their self-rated healthcare communication skills as measured by behavioural intention. Furthermore, the majority expressed a belief that these skills would improve their healthcare. However, in both of the aforementioned studies, post-test evaluations were given immediately following the intervention, so it is unclear if the change in patient confidence levels was sustained over time, or whether actual communication behaviour matched intention.
The impact of communication training on patients’ ratings of satisfaction and communication have also been reported. Meropol et al. (2013) found that patients who participated in the CONNECT intervention found treatment decisions easier to reach and were more likely to be satisfied with their decisions. In addition, intervention patients reported higher levels of satisfaction with physician communication and discussions of support services and quality of life concerns.
An important outcome of patient communication intervention studies is the extent to which training changes patient behaviour. Cegala and colleagues found that compared to patients receiving materials-only or standard care, patients who received materials plus coaching were significantly engaged in more effective and efficient information seeking, provided physicians with more detailed information, and used more summarizing utterances to verify information (Cegala et al. 2000b). Similar results were repeated in a study involving older patients (Cegala et al. 2001). Patients receiving materials plus coaching engaged in significantly more information seeking and provision, and obtained more information. In their trial evaluating a tailored education and coaching intervention, Street et al. (2010) found that intervention patients discussed their pain concerns at a higher rate.
If indeed a communication training programme can improve communication skills, it follows that this should have some effect on more distal outcomes—such as treatment adherence. Cegala and colleagues found that patients who received materials plus coaching were significantly more compliant overall (Cegala et al.2000a). Patients who viewed an educational video addressing colorectal cancer screening information and communication skills reported discussing screening with their provider, had screening tests orders, and completed screening tests at significantly higher rates (Katz et al. 2012). Similarly, diabetes patients who completed a ten-session, culturally-tailored empowerment intervention demonstrated significant improvements in diabetes self-efficacy (i.e. confidence and ability to manage one’s diabetes), self-care behaviours (e.g. following a healthy eating plan), and clinical outcomes (e.g. haemoglobin A1c levels) (Peek et al. 2012).
Other research has shown the importance of considering patient characteristics such as race and culture when formulating patient communication training programmes. The culturally-tailored curriculum discussed above (Peek et al. 2012) provides one example. In another study, subjects received either a 14-page communication workbook two to three days pre-visit, or a two-page patient communication handout in the waiting room. Significant differences in the effect of the interventions on Caucasian patients and African American patients were noted. The workbook had a significant effect on Caucasian patients compared to minimal or no effect on African American patients. Workbook-trained Caucasians asked more questions, obtained more information, had greater delayed recall, and greater adherence than their Caucasian counterparts in either of the other two groups. No such significant differences were found for African American patients (Post et al. 2001).
In summary, the limited literature on comprehensive patient communication training interventions indicates promising findings of the effect of these interventions on patient outcomes. Additional studies are necessary to continue to build an evidence base for effective patient communication training programmes.
One particular limitation of the current research in this area is a lack of a unifying theoretical or conceptual model. Grounding communication training programmes in such a framework is useful in providing coherence to the curriculum, a rationale for the skills being taught and the assessment of those skills. To move patient communication training work forward, we advocate adopting concordance as a conceptual framework.
Concordance as a conceptual framework for patient communication interventions
Our approach to patient communication training is founded upon the same perspective that good provider communication is founded upon—concordance, or a shared agreement between the clinician and patient. With concordance as the goal, training for both clinicians and patients should be directed at attaining that goal. Current communication training focused on patient-centredness and shared decision-making (Brown et al. 2007) attend to the clinician’s role in achieving concordance. We believe that patient communication training programmes that are grounded in the notion of concordance will be the most effective in producing a good physician–patient relationship.
The concept of concordance with respect to regimen decision-making was introduced in 1997 by the Royal British Pharmaceutical Society. Joining calls for greater patient-centred care and shared decision-making, concordance was introduced as a cooperative communication style to decrease the continuing 30–50% medication non-adherence rates. Concordance is defined as an agreement reached after negotiation between a patient and a healthcare professional that respects the beliefs and wishes of the patient in determining whether, when, and how medicines are to be taken (RPSGB 1997). The concordance framework depends on a two-way process, where shared meaning is negotiated between participants (Shah and Chewning 2006). In this model, more attention is paid to mutual responsibility of actors for the effect and effectiveness of the transaction. An underlying assumption is that the context and history of the physician and patient, as well as the other person’s behaviour will influence each person’s behaviour (Shah and Chewning 2006). The final product of the healthcare encounter is an agreed upon regimen to address the patient’s health quality of life priorities. We propose that concordance should be the goal of any physician–patient consultation, even when there is no need for a specific decision to be made, or a regimen to be decided upon. If we think of physician–patient communication as something that happens over a course of many individual consultations, it becomes clear that concordance transcends a discrete visit.
As Pollock (2005) discusses, ‘People seek to contain the disruption of illness, to reduce its significance and engage in lives that are fulfilling and, as far as possible, normal’ (p. 146). However, to do this implies a partnership with clinicians during the healthcare encounter that respects the patient’s priorities and quality of life preferences. It is helpful to view the encounter as a communication pathway in which: a clinician may offer options and ask for patient preferences; patients may or may not state preferences in response to provider requests; both parties offer rationale; and agreement may be reached (Chewning et al. 2006). The concordance perspective recognizes that a patient may quite appropriately choose to delegate the decision role to the clinician. However, in one recent observational study, decisional deferral occurred in only 7% of visits (Chewning et al. 2007). Furthermore, a systematic review of 115 studies published since 2000 found that the majority of patients (in 71% of studies examined) wished to have shared decision roles (Chewning et al. 2012).
At its best, regimen agreement is sought during the encounter by a clinician who communicates much needed expertise and information and by a patient who communicates priorities, concerns, symptoms, and preferences. From this perspective, the patient’s responsibility for observation, self-reflection, and communication is central to the communication framework. Patient as well as provider training is needed for the potential partnership process to result in concordance. While providers need training to offer options and ask for patient preferences, patients in turn may even need help recognizing that the clinician gave an option or the opportunity to state a preference. In a recent observational study, patients underreported the number of times a physician was observed presenting them with an option or asking their preference (Chewning et al. 2006).
Returning to the PACE curriculum (Cegala et al. 2000a; Cegala et al. 2000b), we see how each of these four skills is important to reaching concordance. First, patients need to be able to present information in a clear way in order for physicians to offer the right choices. Second, patients may need more information before offering a preference and therefore need to be able to ask questions. Third, patients may have concerns or criteria relevant to the decision that inform a preference or inform what the physician recommends. Learning how to effectively express concerns may be important. Fourth, in order to ensure that decisions are being made based on a shared understanding of information, patients should check their understanding of the information. These correspond with the four PACE skills. An emphasis that we believe should be added to this curriculum is training patients to articulate a clear preference when one is held (Bylund et al. 2011).
The concordance concept of an encounter in which a decision is to be made involves negotiation. Each party exchanges their rationale and expertise to reach a mutually agreeable recommendation for care. The clinician who makes the decision without input from the patient does so in the dark. Expectations can be established to have the patient monitor regimens and report at the next visit. For example, a side effect monitoring tool of chemotherapy symptom cycles can assist shared decision-making and calibration of regimens (Hermansen-Kobulnicky et al. 2004; Hermansen-Kobulnicky 2002). Monitoring is not simply about adverse effects or symptom relief, but also how well the intervention serves the patient’s quality of life priorities. It can inform the ongoing regimen decisions and the administration of care, such as scheduling chemotherapy to minimize disruption in order to maintain a quality life (Wiederholt 1997). Self-stylized symptom monitoring by cancer patients is already common (Hermansen-Kobulnicky 2009). While clinician behaviours are critical to encourage this involvement, patient training can help patients to have reasonable self-efficacy to share their results with providers as part of the decision process.
Physician–patient communication is a dynamic, socially-constructed process that must have competent communication on both sides of the equation. Although work in training physicians remains critical, we need to expand our thinking to include how to best prepare patients to participate in consultations in ways that will lead to concordance. There is a paucity of published reports of comprehensive patient communication training interventions that move beyond question asking to include other important skills. Growing this area of training and research will contribute in vital ways to scholarship on physician–patient communication, and to patients’ experiences (Street 2003).
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