- Email: [email protected]
Patient-Provider Communication: the Rise of Patient Engagement
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Seminars in Oncology Nursing, Vol 32, No 2 (May), 2016: pp 134-143
PATIENT-PROVIDER COMMUNICATION: THE RISE OF PATIENT ENGAGEMENT CORETTA M. JENERETTE AND DEBORAH K. MAYER OBJECTIVES: To describe the changing dynamics of patient-provider communication with proposals for optimizing this important relationship.
DATA SOURCES: Current research, national programs and guidelines from the National Cancer Institute, the Commission on Cancer, the Institute of Medicine, and the Oncology Nursing Society.
CONCLUSION: There are important opportunities to apply evidence-based strategies to optimize patient-provider communication that will result in improved health outcomes.
IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses across all areas of practice, including clinical care, research, and education, can play a significant role in achieving the goal of positive health outcomes by addressing challenges that inhibit effective patient-provider communication.
KEY WORDS: Patient-provider communication, oncology nursing, engagement.
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Coretta M. Jenerette, PhD, RN, CNE: Associate Professor, School of Nursing, The University of North Carolina at Chapel Hill, NC. Deborah K. Mayer, PhD, RN, AOCN®, FAAN: Professor, School of Nursing, The University of North Carolina at Chapel Hill, Director of Cancer Survivorship, UNC Lineberger Comprehensive Cancer Center, Chapel Hill, NC. Address correspondence to Deborah K. Mayer, PhD, RN, AOCN®, FAAN, UNC Lineberger Comprehensive Cancer Center, UNC-Chapel Hill, Carrington Hall #7460, Chapel Hill, NC 27599-7460. e-mail: [email protected] © 2016 Elsevier Inc. All rights reserved. 0749-2081 http://dx.doi.org/10.1016/j.soncn.2016.02.007
ancer care continues to evolve as we increase our understanding of the etiology of cancer, develop and refine treatments, and develop and evaluate new cancer care delivery models. Yet, at the center of all these health system changes are patients with cancer and their caregivers. Understanding the dynamic relationship between the patient and the providers, particularly the communication relationship, and developing ways to optimize that relationship are the focus of this article. While the US population is expected to grow 10% by 2030, the incidence of cancer will increase 45% to 2.3 million individuals diagnosed each year (up from current 1.6 million) with most of the increase occurring within the older adult and minority population.1,2 In addition, the number of cancer survivors is projected to increase by 31%, to almost
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19 million, by 2024, representing an increase of more than 4 million survivors in 10 years.1,2 These statistics have implications for both the health care system and the providers who will see more new cancer patients and follow many more over time. At the same time that the cancer population is increasing, the American Society of Clinical Oncology projects that the number of oncology providers will not be adequate to deliver quality cancer care in the future. Specifically, projections indicate that there is a need for 40% more oncologists to meet the needs of the growing population of cancer patients, but the expected growth of medical and radiation oncologists is only 25%.3 There is a similar gap for the number of available primary care physicians needed to care for this growing population, in particular the increasing number of elderly.4 While the number of nurses and advanced practice nurses is growing at an annual rate of 2.6%, the number of nurses will be insufficient to meet the projected needs within the health care system. The projected nursing shortage is in part because of the retirement of many nurses currently in the work force.5 To meet this looming work force challenge, new models of team-based care will be needed across all cancer care settings and will require improved coordination of care with an emphasis on the patient-provider relationship. Because of the limitations in the provider work force and the increasingly complex cancer population, inevitable changes in cancer care delivery will occur and more will be expected of the patient and family as active members of their cancer care team. For example, hospital stays have become shorter and more complex care is being delivered in the outpatient setting or in the home. Increasingly, women undergoing breast cancer surgery are being discharged within 24 hours and stem cell transplants are being performed on an outpatient basis. These changes in delivery will require a planned approach to providing the needed education and support as patients and families assume new responsibilities. While much of care is focused on the person with cancer, it is critical to include the caregiver(s), especially as they assume more direct care responsibilities. While not necessarily an official patient in the health care system, it is well documented that caregivers frequently experience physical and emotional distress during this time and will need support.6-8 Caregiver strain or burden is defined as difficulty assuming and functioning in the caregiver role, as well as associated alterations
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in the caregiver’s emotional and physical health that can occur when the demands of providing care exceed resources and may fluctuate over the cancer trajectory. 6-8 Cognitive behavioral and psychoeducational interventions that have demonstrated effectiveness in ameliorating caregiver burden or strain will need to be widely available. Some known interventions for caregivers of cancer patients include integrated caregiver support,9 meaning-centered psychotherapy,10 mindfulnessbased stress reduction,11,12 and eHealth platforms such as the Comprehensive Health Enhancement Support System (CHESS), which includes information, communication, and a coaching system for caregivers.13 The selected interventions will need to be targeted to individual situations to have higher probability of improving the caregiver’s quality of life.14 Communication will be key in identifying patients and families in need of intervention. Studies have also shown that cancer patients, including survivors, have many unmet needs, regardless of the stage of disease. These needs range from medical issues to information gaps and unmet psychosocial support.15 Need for psychological support is especially prevalent, even in wellinformed cancer survivors.16 In a study conducted by the American Cancer Society, open-ended questions were administered to over 1500 survivors who identified their unmet needs as: physical, financial, social support, information, educational and emotional, body image, identity, existential, employment, provider relationship, and communication.17 These needs remained similar over a 10-year period beginning at diagnosis. These study results have important implications for ongoing assessment and tailored interventions throughout the cancer patient’s journey. Effective communication to identify these needs is an essential first step and includes the use of patientreported outcomes (PRO) as a validated means of receiving information directly from the patient. Electronic tools, such as patient portals within electronic medical record systems allow sharing among providers and between patients and providers.
PATIENT-CENTERED CARE The Institute of Medicine defines patient-centered care as: “Providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.”18 Institutions that have
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FIGURE 1. Patient-centered communication in cancer care framework. (Reprinted from Epstein RM, Street RL Jr, editors. Patient-centered communication in cancer care: promoting healing and reducing suffering. National Cancer Institute, NIH Publication No. 07–6225. Bethesda, MD, 2007, p.18.20).
undertaken a formal plan to place the patient at the center of their clinical care planning have found improved quality of health care, including safety and efficiency, reduced costs and greater satisfaction on the part of the patient and provider.19 Communication is an essential part of the patientcentered focus. A conceptual framework for patientcentered communication was developed for the National Cancer Institute by Epstein and Street to promote effective communication to enhance the cancer experience and improve the patient’s health outcomes (Fig. 1).20 The six core functions of communication include fostering patient-clinician healing relationships, exchanging information, responding to emotions, managing uncertainty, making decisions, and enabling self-management. Outcomes of effective communication can be categorized in a number of different domains, as illustrated in Table 1.20 Fostering the patient-clinician relationship is an important goal of communication and requires that a clinician demonstrate guidance, offer emotional support and provide tailored health information.21 The patient-clinician relationship also requires the active engagement of the patient. There are a variety of terms used to describe a person’s active involvement in his/her care, including empowerment, engagement, and activation.22 Patient empowerment is defined as ”the acquisition of motivation
and ability and opportunities that patients might use to be involved or participate in decisionmaking, thus creating an opportunity for higher levels of power in their relationship with professionals.” 22,23 Jerofke 24 defines empowerment as having the knowledge, skills and support along with mutual trust and respect for autonomy. Empowered patients will be able to ask questions, communicate assertively, and express concerns and feelings. Enablement involves possessing the skills, tools and abilities to accomplish a goal, and self-efficacy is the belief that one can accomplish a goal.25 Activation refers to the degree to which the individual understands they must play an active role in managing their own health, and the extent to which they feel able to fulfill that role. Specifically, it refers to the individual’s knowledge, skill, and confidence for managing his/her own health and health care.26 Regardless of the term, all of these words point to the need for informed patients who participate in their care. An important component of all these definitions includes having the knowledge to foster the patient relationship and make the exchange of information a core element in patient-centered communication. Traditionally, information has been exchanged in face-to-face encounters. However, there has been a dramatic shift in the way information is shared with an increase in the use of mediated
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TABLE 1. Outcomes of effective communication Communication outcomes
Intermediate outcomes
Health outcomes Societal outcomes
Strong patient/family-clinician relationships (trust, rapport, respect, involvement of family and caregivers) Effective information exchange (recall of information, feeling known and understood) Validation of emotions (eg, empathy) Acknowledgement, understanding, and tolerance of uncertainty Patient participation in decision-making Coordination of care Strong therapeutic alliances Patient knowledge and understanding Emotional self-management High-quality medical decisions (informed by clinical evidence, concordant with patient values and mutually endorsed) Family/social support and advocacy Patient self-efficacy, empowerment and enablement Improved adherence, health habits, and self-care Survival and disease-free survival Health-related quality of life Cost-effective utilization of health services Reduction of disparities in health and health care Ethical practice (eg, informed consent)
Reprinted from Epstein RM, Street RL Jr, editors. Patient-centered communication in cancer care: promoting healing and reducing suffering. National Cancer Institute, NIH Publication No. 07–6225. Bethesda, MD, 2007, p.18.20
communication that was not imaginable just a few decades ago, such as telehealth, eHealth (including web-based interventions, smart phones and equipment) and telephone coaching.27 Increasingly, web-based interventions play an important role in providing information and developing the skills cancer patients need to enhance patient-provider relationships. While these interventions are being more widely used in oncology, there is growing evidence that the interventions have positive effects on empowering cancer patients.28
THE FUTURE OF WEB-BASED INTERVENTIONS In cancer care, there is a growing emphasis on healthy lifestyles, including physical activity, to enhance overall health outcomes and quality of life for cancer survivors.29 To date, many web-based interventions have focused on increasing physical activity in chronic disease.30,31 A recent review of the literature highlighted interactive web-based interventions that focused on patient empowerment and physical activity for various chronic conditions. This review determined that these interventions could possibly be translated into eHealth recommendations for cancer survivors.30 Although the content, duration and frequency of
the interventions varied across studies, the content elements were standard and included education, self-management training, tailored information, personal exercise training and online communication.30 Another area currently being evaluated for use by cancer patients and survivors is interactive health portals. Patient empowerment is facilitated by the use of interactive portals because the portals have a broad range of applications, including access to the electronic medical record, collecting and sharing PROs, clinical interactions, e-consultations, and establishing online patient communities. Beginning evidence supports that portals are viewed positively by both cancer survivors and health care providers. In particular, cancer survivors are most interested in portals for a variety of reasons: as a home for the survivorship care plan, having access to their electronic medical record to share with their non-oncology providers, and easy access to appointment information. Similarly, health care providers were interested in information about PROs and telemonitoring.32 PROs are increasingly being incorporated into clinical care. These may be delivered through the electronic health record portal, on tablets in the clinic waiting room, or at kiosks. Evidence supports the use of PROs as a way to improve patient outcomes by notifying providers of issues that must
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be addressed.33 PROs also provide a mechanism for identifying issues that patients would like to discuss at a clinical visit, thus providing a focus for that interaction and a means for the clinician to provide information about those issues. Basch and colleagues34 found that regularly eliciting cancer patients’ symptoms led to improved outcomes, including a decrease in emergency department visits, greater adherence to chemotherapy, improved quality of life, and improved survival.
PATIENT-PROVIDER COMMUNICATION CHALLENGES In oncology, communication training has been most commonly directed toward modules on “giving bad news” and has had limited focus on responding to emotions outside of that scenario. As noted previously, the provision of psychosocial support is an area identified by cancer patients as an unmet need and may be caused, in part, by clinicians not responding to patient and family emotions, notably symptoms of distress. Distress is defined as a multifactorial unpleasant emotional experience of a psychological (ie, cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment.35 Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness, and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crisis.35 One important step in addressing the unmet need of emotional distress is the recent Commission on Cancer Standard that requires distress screening and referral for psychosocial care.36 However, screening is only the first step. Clinicians must also be educated to recognize and respond appropriately to emotional distress. Anyone facing a cancer diagnosis also faces the uncertainty of outcome while needing to manage uncertainty and make decisions. Will there be a cure? At what price? Will the cancer come back (or never go away)? Did I make the right decision?37,38 Lack of information increases uncertainty and decreases patient and family engagement, leading to adverse consequences such as increased anxiety, increased length of stay, sub-optimal recovery, and unnecessary readmission.37,38 Uncertainty and lack of communication between the
patient and the health care team can also lead to regret. In contrast, when providers communicate in ways that express empathy and include patients in decision-making at their preferred level of engagement, decision regret is decreased.37,38 Attention to individual styles and preferences for making shared decisions is also critical.39
SELF-MANAGEMENT INTERVENTIONS As a result of advances in detection, diagnosis and treatment, cancer patients are living longer and cancer is increasingly being managed as a chronic illness that requires care across the continuum from diagnosis to survivorship to end of life. Applying a chronic care model to cancer allows oncology clinicians to enable and empower patients in self-management, encouraging them to care for themselves in the way they prefer.40 One important example where self-management is essential for cancer patients is symptom management. For example, pain is the number one reason people seek medical care and is a paradigm for other cancerrelated symptoms.18 When nurses engage with patients to provide education, counseling, or information technology, patients are empowered and pain management activities are improved.28,41,42 Promising interventions that assist patients in communicating with providers and in describing their pain have been tested and include: 1) individual coaching before an office visit,43 and 2) the use of written scripts along with psycho-educational interventions.44 Both interventions resulted in significant pain reduction and suggested that patients can be taught to effectively communicate their pain. While the cost of individual coaching intervention sessions might limit the widespread use of this approach, there may be other means to do this through virtual visits and eHealth applications. Selfmanagement is an important approach for patients to effectively manage chronic illnesses. Post and colleagues45 propose that patient communication training can help to address the need for patients to actively participate in their health care collaboratively with providers. Training patients to more effectively communicate with providers significantly increases patient participation in their health care and has a significant impact on health care outcomes.46,47 Patients with this type of communication training more actively seek information, more often state their treatment preferences, and provide more detailed information about their
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symptoms.48,49 Patient communication training has also been shown to improve patient adherence to treatment recommendations, as well as improvements in health outcomes related to diabetes, hypertension, and ulcer disease.50,51 These successes demonstrated in patients with common chronic diseases now must be evaluated in the cancer population. However, it is important to acknowledge that not all patients and families will be able to be active participants in the same way. Selfmanagement for cancer patients can be complex and readiness and ability to participate in one’s care can differ significantly. Patient-centered care, focusing on individual ability and motivation to engage in self-management, would identify those individuals where cancer information overload, or being overwhelmed by cancer information, is occurring and will necessitate additional support options for them.52
HEALTH DISPARITIES IN COMMUNICATION Effective patient-provider communication is an antecedent to self-management and is positively associated with quality care and self-efficacy, regardless of race.53 However, if racial disparities are present in patient-provider communication, selfmanagement can be compromised. For example when compared with white cancer survivors, Hispanic and Asian survivors report poorer overall communication with providers; Asians also report poorer follow-up care communication and care quality.53 Additionally, among patients with prostate cancer, Song and colleagues54 found that, compared with African Americans, white Americans had significantly greater mean scores of interpersonal treatment (P < .01) and prostate cancer communication (P < .001), and that better patient–provider communication was associated with more physician trust, less perceived racism, greater religious beliefs (all P-values <.01), and at least high school education (P < .05). Even in potential pre-cancerous conditions such BRCA1 mutations in African American women, research suggests that patient-provider communication about the genetic test is suboptimal.55
FUTURE OPPORTUNITIES As our health care delivery systems continue to evolve, there will be an increasing number of
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evidence-based eHealth communication interventions to extend and enhance patient-provider relationships. To be successful, communication skills training will need to be more integrated into health care providers’ education and extended to the patient and family. In this final section, we provide some insight into the shifting paradigm in patientprovider communication and how these changes might improve health outcomes and some factors that should be considered as health care providers make efforts to collaboratively engage with cancer patients. Although teaching communication skills to providers is not new, the paradigm for what is taught is shifting to include: establishing the consultation framework, checking skills, questioning skills, empathic communication skills, information organization skills and shared decision-making skills.56-58 A Cochrane review was performed in 2013 to evaluate communication skills training with a variety of health care providers and found that communication skills training increased providers’ ability to ask open-ended questions and to show empathy toward patients.59 Although communication skills training for providers is a promising approach to enhance both communication behaviors and attitudes among providers, more research needs to deduce the optimal training while also considering the financial challenges.60 Adaptable training that can be used among different types of providers has been shown to be beneficial in oncology, specifically in discussing death, dying, and end of life care goals, an often challenging topic.61 One example of a communication technique under evaluation that may make patients feel more empowered is teaching patients how to communicate using the same strategies most often used by health care providers. Situation, background, assessment, and recommendation (SBAR), has been described as a collaborative communication strategy that includes easy-to-remember techniques that provide for consistent, structured communication between members of health care teams.62 Communication begins with describing the current Situation. Next, the Background that led to the current situation is described. Based on the background and current situation, an Assessment or possible problem is determined. Finally, after the situation, background, and assessment, a Recommendation is made to resolve the situation. Structured communication techniques such as SBAR have been shown to improve patient safety
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in health care environments.63 Because SBAR uses a communication syntax familiar to health care providers, its use by patients when communicating with health care providers could lead to positive interactions while setting the tone for the remainder of the visit by enhancing credibility, trust,64 and positive self-presentation.65 Te Boveldt and colleagues66 suggest a conceptual model to empower patients in controlling cancer pain that focuses on pain treatment, active patient involvement in treatment, and the interaction of both. This conceptual model is supported by a study conducted by McDonald and colleagues,67 who found that nurses did not respond with more pain management strategies when patients described pain in their own words, or in their own words plus a pain intensity scale. This study suggests that patients may have better health outcomes, such as satisfaction with their care-seeking experience for pain management, if they use syntax familiar to health care providers. The Advancing Medical Professionalism to Improve Health Care (ABIM) Foundation launched Choosing Wisely in 2012 – a national initiative that centers on eliminating wasteful or unnecessary medical tests, treatments and procedures by making sure that conversations take place between providers and patients.68 The Choosing Wisely initiative includes communication education modules to aid providers in conversations with patients about overuse and unnecessary medical tests. Modules are designed for physician groups, but could be adapted or used by other providers, such as nurse practitioners. Each module contains a video welcome from the specific targeted provider, a pre-test, an introduction to Choosing Wisely, key skills for communication (eg, clear information, empathy, and confirming agreement), five recommendations, a post-test, and handouts. Many factors affect patient-provider communication, including social support. To facilitate patient and family communication skills, Groen and colleagues28 conducted an integrative review to identify conceptual components of patient empowerment in people with chronic diseases, especially cancer survivors, and to explore the contribution of existing and new information technology services to promote empowerment. They found that perceived support from community, family, and friends and perceiving oneself to be useful are vital to patient empowerment in oncology settings. Therefore, it would be important to assess patient support as well as level of activation in a patient’s health.
Because cancer patients often have complex treatment plans, health literacy is an important component of patient-provider communication. Therefore, an assessment of the health literacy of patients and caregivers is essential for their understanding and ability to act on the recommendations in treatment plans.69 Health literacy is influenced by education, culture, language, and the characteristics of health-related settings, for example, the amount of technology the patient must use.70 Health literacy skills include reading, writing, mathematics, speaking, listening, use of technology, networking, and rhetorical skills associated with requests, advocacy, and complaints. Some of these skills, if not all, are necessary for functioning in a number of health contexts: promoting and protecting health and preventing disease; navigating the health care system; actively participating in encounters with health care professionals; understanding, interpreting, and analyzing health information; understanding and giving consent; understanding and advocating for rights; and applying health information over life events and situations.70 Persons with limited health literacy report poorer health status, have less knowledge of disease management and health promoting behaviors, and are less likely to use preventive services.70 Although cancer diagnoses may be similar by name and/or presentation, each individual and family experiences cancer differently and therefore empowerment activities must be individualized. Thus, the overall goals and outcomes of patient empowerment through effective communication should not be predetermined by the health care providers, but should mutually be agreed upon as the result of thoughtful discussion with every patient/ family based on his/her own situation and preferences.23 For example, cancer survivors may benefit most from a plan of care that includes tailored spiritual care, increased family involvement, and efforts to connect with other indigenous cancer survivors.71 Efforts to enhance patient empowerment should include tools to improve health literacy, remote access to health services, and self-care mechanisms.72 Patient-provider communication significantly impacts health outcomes. Oncology nurses across all areas of practice, including clinical care, research, and education, can play a significant role in achieving positive outcomes by being a part of the paradigm shift to meet the dynamic needs of cancer patients with effective patient-provider communication.
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34. Basch E, Deal AM, Kris MG, et al. Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol 2016;34:557565. 35. NCCN. Distress management. 2016. Available at: http://www.nccn.org/professionals/physician_gls/pdf/distress.pdf. Accessed January 14, 2016. 36. Commission on Cancer. 2012 standards of care standard 3.2. 2016. Available at: https://www.facs.org/~/media/files/ quality%20programs/cancer/coc/programstandards2012.ashx. Accessed January 14, 2016. 37. Waller A, Forshaw K, Bryant J, Carey M, Boyes A, Sanson-Fisher R. Preparatory education for cancer patients undergoing surgery: a systematic review of volume and quality of research output over time. Patient Educ Couns 2015;12:15401549. 38. Nicolai J, Buchholz A, Seefried N, et al. When do cancer patients regret their treatment decision? A path analysis of the influence of clinicians’ communication styles and the match of decision-making styles on decision regret. Patient Educ Couns 2015;pii: S0738-3991(15)30136-1. doi:10.1016/j.pec.2015.11.019; Epub ahead of print. 39. Chewning B, Bylund CL, Shah B, Arora NK, Gueguen JA, Makoul G. Patient preferences for shared decisions: a systematic review. Patient Educ Couns 2012;86:9-18. 40. McCorkle R, Ercolano E, Lazenby M, et al. Selfmanagement: enabling and empowering patients living with cancer as a chronic illness. CA Cancer J Clin 2011;61: 50-62. 41. Rimer B, Levy MH, Keintz MK, Fox L, Engstrom PF, MacElwee N. Enhancing cancer pain control regimens through patient education. Patient Educ Couns 1987;10:267-277. 42. Schulman-Green D, Jaser S, Martin F, et al. Processes of self-management in chronic illness. J Nurs Scholarsh 2012;44:136-144. 43. Oliver JW, Kravitz RL, Kaplan SH, Meyers FJ. Individualized patient education and coaching to improve pain control among cancer outpatients. J Clin Oncol 2001;19:22062212. 44. Miaskowski C, Dodd M, West C, et al. Randomized clinical trial of the effectiveness of a self-care intervention to improve cancer pain management. J Clin Oncol 2004;22:1713-1720. 45. Post DM, Cegala DJ, Miser WF. The other half of the whole: teaching patients to communicate with physicians. Fam Med 2002;34:344-352. 46. Post LF, Blustein J, Dubler NN. The doctor-proxy relationship: an untapped resource: introduction. J Law Med Ethics 1999;27:5-12. 47. Andersen LA, Sharpe PA. Improving patient and provider communications: a synthesis and review of communication interventions. Patient Educ Couns 1991;17:99-134. 48. Beisecker AE, Beisecker TD. Patient informationseeking behaviors when communicating with doctors. Med Care 1990;28:19-28. 49. Cegala DJ, McClure L, Marinelli TM, Post DM. The effects of communication skills training on patients’ participation during medical interviews. Patient Educ Couns 2000;41:209-222. 50. Greenfield S, Kaplan S, Ware JE Jr. Expanding patient involvement in care. Effects on patient outcomes. Ann Intern Med 1985;102:520-528. 51. Kaplan SH, Greenfield S, Ware JE Jr. Assessing the effects of physician-patient interactions on the outcomes of chronic disease. Med Care 1989;27:S110-S127.
52. Chae J, Lee CJ, Jensen JD. Correlates of cancer information overload: focusing on individual ability and motivation. Health Commun 2016;31:626-634. 53. Palmer NR, Kent EE, Forsythe LP, et al. Racial and ethnic disparities in patient-provider communication, quality-of-care ratings, and patient activation among long-term cancer survivors. J Clin Oncol 2014;32:4087-4094. 54. Song L, Weaver MA, Chen RC, et al. Associations between patient-provider communication and socio-cultural factors in prostate cancer patients: a cross-sectional evaluation of racial differences. Patient Educ Couns 2014;97:339346. 55. Kinney AY, Simonsen SE, Baty BJ, et al. Risk reduction behaviors and provider communication following genetic counseling and BRCA1 mutation testing in an African American kindred. J Genet Couns 2006;15:293-305. 56. Bylund CL, Brown R, Gueguen JA, Diamond C, Bianculli J, Kissane DW. The implementation and assessment of a comprehensive communication skills training curriculum for oncologists. Psychooncology 2010;19:583593. 57. Bylund CL, Brown RF, Bialer PA, Levin TT, Lubrano di Ciccone B, Kissane DW. Developing and implementing an advanced communication training program in oncology at a comprehensive cancer center. J Cancer Educ 2011;26:604611. 58. Sheldon LK, Foust J, eds. Communication for nurses: talking with patients. Ed 3. Burlington, MA: Jones & Bartlett Learning; 2013. 59. Moore PM, Rivera Mercado S, Grez Artigues M, Lawrie TA. Communication skills training for healthcare professionals working with people who have cancer. Cochrane Database Syst Rev 2013;(3):CD003751. 60. Barth J, Lannen P. Efficacy of communication skills training courses in oncology: a systematic review and meta-analysis. Ann Oncol 2011;22:1030-1040. 61. Coyle N, Manna R, Shen M, et al. Discussing death, dying, and end-of-life goals of care: a communication skills training module for oncology nurses. Clin J Oncol Nurs 2015;19:697702. 62. Woodhall LJ, Vertacnik L, McLaughlin M. Implementation of the SBAR communication technique in a tertiary center. J Emerg Nurs 2008;34:314-317. 63. Beckett CD, Kipnis G. Collaborative communication: integrating SBAR to improve quality/patient safety outcomes. J Healthc Qual 2009;31:19-28. 64. Fay-Hillier TM, Regan RV, Gallagher Gordon M. Communication and patient safety in simulation for mental health nursing education. Issues Ment Health Nurs 2012;33: 718-726. 65. Malat JR, van Ryn M, Purcell D. Race, socioeconomic status, and the perceived importance of positive self-presentation in health care. Soc Sci Med 2006;62:2479-2488. 66. Te Boveldt N, Vernooij-Dassen M, Leppink I, Samwel H, Vissers K, Engels Y. Patient empowerment in cancer pain management: an integrative literature review. Psychooncology 2014;23:1203-1211. 67. McDonald DD, Laporta M, Meadows-Oliver M. Nurses’ response to pain communication from patients: a post-test experimental study. Int J Nurs Stud 2007;44:2935. 68. ABIM Foundation. Advancing medical professionalism to improve health care foundation. Choosing Wisely. 2016.
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Available at: http://www.abimfoundation.org/Initiatives/Choosing -Wisely.aspx. Accessed January 29, 2016. 69. Adams K, Corrigan J, eds. Priority areas for national action: transforming health care quality. Washington, DC: National Academies Press; 2003. 70. Nielsen-Bohlman L, Panzer AM, Kindig DA, eds. Health literacy: a prescription to end confusion. Washington, DC: National Academies Press; 2004.
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71. Cavanagh BM, Wakefield CE, McLoone JK, Garvey G, Cohn RJ. Cancer survivorship services for indigenous peoples: where we stand, where to improve? A systematic review. J Cancer Surviv 2015;Epub ahead of print. 72. Calvillo J, Roman I, Roa LM. How technology is empowering patients? A literature review. Health Expect 2015;18:643-652.
Seminars in Oncology Nursing, Vol 32, No 2 (May), 2016: pp 134-143
PATIENT-PROVIDER COMMUNICATION: THE RISE OF PATIENT ENGAGEMENT CORETTA M. JENERETTE AND DEBORAH K. MAYER OBJECTIVES: To describe the changing dynamics of patient-provider communication with proposals for optimizing this important relationship.
DATA SOURCES: Current research, national programs and guidelines from the National Cancer Institute, the Commission on Cancer, the Institute of Medicine, and the Oncology Nursing Society.
CONCLUSION: There are important opportunities to apply evidence-based strategies to optimize patient-provider communication that will result in improved health outcomes.
IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses across all areas of practice, including clinical care, research, and education, can play a significant role in achieving the goal of positive health outcomes by addressing challenges that inhibit effective patient-provider communication.
KEY WORDS: Patient-provider communication, oncology nursing, engagement.
C
Coretta M. Jenerette, PhD, RN, CNE: Associate Professor, School of Nursing, The University of North Carolina at Chapel Hill, NC. Deborah K. Mayer, PhD, RN, AOCN®, FAAN: Professor, School of Nursing, The University of North Carolina at Chapel Hill, Director of Cancer Survivorship, UNC Lineberger Comprehensive Cancer Center, Chapel Hill, NC. Address correspondence to Deborah K. Mayer, PhD, RN, AOCN®, FAAN, UNC Lineberger Comprehensive Cancer Center, UNC-Chapel Hill, Carrington Hall #7460, Chapel Hill, NC 27599-7460. e-mail: [email protected] © 2016 Elsevier Inc. All rights reserved. 0749-2081 http://dx.doi.org/10.1016/j.soncn.2016.02.007
ancer care continues to evolve as we increase our understanding of the etiology of cancer, develop and refine treatments, and develop and evaluate new cancer care delivery models. Yet, at the center of all these health system changes are patients with cancer and their caregivers. Understanding the dynamic relationship between the patient and the providers, particularly the communication relationship, and developing ways to optimize that relationship are the focus of this article. While the US population is expected to grow 10% by 2030, the incidence of cancer will increase 45% to 2.3 million individuals diagnosed each year (up from current 1.6 million) with most of the increase occurring within the older adult and minority population.1,2 In addition, the number of cancer survivors is projected to increase by 31%, to almost
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19 million, by 2024, representing an increase of more than 4 million survivors in 10 years.1,2 These statistics have implications for both the health care system and the providers who will see more new cancer patients and follow many more over time. At the same time that the cancer population is increasing, the American Society of Clinical Oncology projects that the number of oncology providers will not be adequate to deliver quality cancer care in the future. Specifically, projections indicate that there is a need for 40% more oncologists to meet the needs of the growing population of cancer patients, but the expected growth of medical and radiation oncologists is only 25%.3 There is a similar gap for the number of available primary care physicians needed to care for this growing population, in particular the increasing number of elderly.4 While the number of nurses and advanced practice nurses is growing at an annual rate of 2.6%, the number of nurses will be insufficient to meet the projected needs within the health care system. The projected nursing shortage is in part because of the retirement of many nurses currently in the work force.5 To meet this looming work force challenge, new models of team-based care will be needed across all cancer care settings and will require improved coordination of care with an emphasis on the patient-provider relationship. Because of the limitations in the provider work force and the increasingly complex cancer population, inevitable changes in cancer care delivery will occur and more will be expected of the patient and family as active members of their cancer care team. For example, hospital stays have become shorter and more complex care is being delivered in the outpatient setting or in the home. Increasingly, women undergoing breast cancer surgery are being discharged within 24 hours and stem cell transplants are being performed on an outpatient basis. These changes in delivery will require a planned approach to providing the needed education and support as patients and families assume new responsibilities. While much of care is focused on the person with cancer, it is critical to include the caregiver(s), especially as they assume more direct care responsibilities. While not necessarily an official patient in the health care system, it is well documented that caregivers frequently experience physical and emotional distress during this time and will need support.6-8 Caregiver strain or burden is defined as difficulty assuming and functioning in the caregiver role, as well as associated alterations
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in the caregiver’s emotional and physical health that can occur when the demands of providing care exceed resources and may fluctuate over the cancer trajectory. 6-8 Cognitive behavioral and psychoeducational interventions that have demonstrated effectiveness in ameliorating caregiver burden or strain will need to be widely available. Some known interventions for caregivers of cancer patients include integrated caregiver support,9 meaning-centered psychotherapy,10 mindfulnessbased stress reduction,11,12 and eHealth platforms such as the Comprehensive Health Enhancement Support System (CHESS), which includes information, communication, and a coaching system for caregivers.13 The selected interventions will need to be targeted to individual situations to have higher probability of improving the caregiver’s quality of life.14 Communication will be key in identifying patients and families in need of intervention. Studies have also shown that cancer patients, including survivors, have many unmet needs, regardless of the stage of disease. These needs range from medical issues to information gaps and unmet psychosocial support.15 Need for psychological support is especially prevalent, even in wellinformed cancer survivors.16 In a study conducted by the American Cancer Society, open-ended questions were administered to over 1500 survivors who identified their unmet needs as: physical, financial, social support, information, educational and emotional, body image, identity, existential, employment, provider relationship, and communication.17 These needs remained similar over a 10-year period beginning at diagnosis. These study results have important implications for ongoing assessment and tailored interventions throughout the cancer patient’s journey. Effective communication to identify these needs is an essential first step and includes the use of patientreported outcomes (PRO) as a validated means of receiving information directly from the patient. Electronic tools, such as patient portals within electronic medical record systems allow sharing among providers and between patients and providers.
PATIENT-CENTERED CARE The Institute of Medicine defines patient-centered care as: “Providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.”18 Institutions that have
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FIGURE 1. Patient-centered communication in cancer care framework. (Reprinted from Epstein RM, Street RL Jr, editors. Patient-centered communication in cancer care: promoting healing and reducing suffering. National Cancer Institute, NIH Publication No. 07–6225. Bethesda, MD, 2007, p.18.20).
undertaken a formal plan to place the patient at the center of their clinical care planning have found improved quality of health care, including safety and efficiency, reduced costs and greater satisfaction on the part of the patient and provider.19 Communication is an essential part of the patientcentered focus. A conceptual framework for patientcentered communication was developed for the National Cancer Institute by Epstein and Street to promote effective communication to enhance the cancer experience and improve the patient’s health outcomes (Fig. 1).20 The six core functions of communication include fostering patient-clinician healing relationships, exchanging information, responding to emotions, managing uncertainty, making decisions, and enabling self-management. Outcomes of effective communication can be categorized in a number of different domains, as illustrated in Table 1.20 Fostering the patient-clinician relationship is an important goal of communication and requires that a clinician demonstrate guidance, offer emotional support and provide tailored health information.21 The patient-clinician relationship also requires the active engagement of the patient. There are a variety of terms used to describe a person’s active involvement in his/her care, including empowerment, engagement, and activation.22 Patient empowerment is defined as ”the acquisition of motivation
and ability and opportunities that patients might use to be involved or participate in decisionmaking, thus creating an opportunity for higher levels of power in their relationship with professionals.” 22,23 Jerofke 24 defines empowerment as having the knowledge, skills and support along with mutual trust and respect for autonomy. Empowered patients will be able to ask questions, communicate assertively, and express concerns and feelings. Enablement involves possessing the skills, tools and abilities to accomplish a goal, and self-efficacy is the belief that one can accomplish a goal.25 Activation refers to the degree to which the individual understands they must play an active role in managing their own health, and the extent to which they feel able to fulfill that role. Specifically, it refers to the individual’s knowledge, skill, and confidence for managing his/her own health and health care.26 Regardless of the term, all of these words point to the need for informed patients who participate in their care. An important component of all these definitions includes having the knowledge to foster the patient relationship and make the exchange of information a core element in patient-centered communication. Traditionally, information has been exchanged in face-to-face encounters. However, there has been a dramatic shift in the way information is shared with an increase in the use of mediated
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TABLE 1. Outcomes of effective communication Communication outcomes
Intermediate outcomes
Health outcomes Societal outcomes
Strong patient/family-clinician relationships (trust, rapport, respect, involvement of family and caregivers) Effective information exchange (recall of information, feeling known and understood) Validation of emotions (eg, empathy) Acknowledgement, understanding, and tolerance of uncertainty Patient participation in decision-making Coordination of care Strong therapeutic alliances Patient knowledge and understanding Emotional self-management High-quality medical decisions (informed by clinical evidence, concordant with patient values and mutually endorsed) Family/social support and advocacy Patient self-efficacy, empowerment and enablement Improved adherence, health habits, and self-care Survival and disease-free survival Health-related quality of life Cost-effective utilization of health services Reduction of disparities in health and health care Ethical practice (eg, informed consent)
Reprinted from Epstein RM, Street RL Jr, editors. Patient-centered communication in cancer care: promoting healing and reducing suffering. National Cancer Institute, NIH Publication No. 07–6225. Bethesda, MD, 2007, p.18.20
communication that was not imaginable just a few decades ago, such as telehealth, eHealth (including web-based interventions, smart phones and equipment) and telephone coaching.27 Increasingly, web-based interventions play an important role in providing information and developing the skills cancer patients need to enhance patient-provider relationships. While these interventions are being more widely used in oncology, there is growing evidence that the interventions have positive effects on empowering cancer patients.28
THE FUTURE OF WEB-BASED INTERVENTIONS In cancer care, there is a growing emphasis on healthy lifestyles, including physical activity, to enhance overall health outcomes and quality of life for cancer survivors.29 To date, many web-based interventions have focused on increasing physical activity in chronic disease.30,31 A recent review of the literature highlighted interactive web-based interventions that focused on patient empowerment and physical activity for various chronic conditions. This review determined that these interventions could possibly be translated into eHealth recommendations for cancer survivors.30 Although the content, duration and frequency of
the interventions varied across studies, the content elements were standard and included education, self-management training, tailored information, personal exercise training and online communication.30 Another area currently being evaluated for use by cancer patients and survivors is interactive health portals. Patient empowerment is facilitated by the use of interactive portals because the portals have a broad range of applications, including access to the electronic medical record, collecting and sharing PROs, clinical interactions, e-consultations, and establishing online patient communities. Beginning evidence supports that portals are viewed positively by both cancer survivors and health care providers. In particular, cancer survivors are most interested in portals for a variety of reasons: as a home for the survivorship care plan, having access to their electronic medical record to share with their non-oncology providers, and easy access to appointment information. Similarly, health care providers were interested in information about PROs and telemonitoring.32 PROs are increasingly being incorporated into clinical care. These may be delivered through the electronic health record portal, on tablets in the clinic waiting room, or at kiosks. Evidence supports the use of PROs as a way to improve patient outcomes by notifying providers of issues that must
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be addressed.33 PROs also provide a mechanism for identifying issues that patients would like to discuss at a clinical visit, thus providing a focus for that interaction and a means for the clinician to provide information about those issues. Basch and colleagues34 found that regularly eliciting cancer patients’ symptoms led to improved outcomes, including a decrease in emergency department visits, greater adherence to chemotherapy, improved quality of life, and improved survival.
PATIENT-PROVIDER COMMUNICATION CHALLENGES In oncology, communication training has been most commonly directed toward modules on “giving bad news” and has had limited focus on responding to emotions outside of that scenario. As noted previously, the provision of psychosocial support is an area identified by cancer patients as an unmet need and may be caused, in part, by clinicians not responding to patient and family emotions, notably symptoms of distress. Distress is defined as a multifactorial unpleasant emotional experience of a psychological (ie, cognitive, behavioral, emotional), social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment.35 Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness, and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crisis.35 One important step in addressing the unmet need of emotional distress is the recent Commission on Cancer Standard that requires distress screening and referral for psychosocial care.36 However, screening is only the first step. Clinicians must also be educated to recognize and respond appropriately to emotional distress. Anyone facing a cancer diagnosis also faces the uncertainty of outcome while needing to manage uncertainty and make decisions. Will there be a cure? At what price? Will the cancer come back (or never go away)? Did I make the right decision?37,38 Lack of information increases uncertainty and decreases patient and family engagement, leading to adverse consequences such as increased anxiety, increased length of stay, sub-optimal recovery, and unnecessary readmission.37,38 Uncertainty and lack of communication between the
patient and the health care team can also lead to regret. In contrast, when providers communicate in ways that express empathy and include patients in decision-making at their preferred level of engagement, decision regret is decreased.37,38 Attention to individual styles and preferences for making shared decisions is also critical.39
SELF-MANAGEMENT INTERVENTIONS As a result of advances in detection, diagnosis and treatment, cancer patients are living longer and cancer is increasingly being managed as a chronic illness that requires care across the continuum from diagnosis to survivorship to end of life. Applying a chronic care model to cancer allows oncology clinicians to enable and empower patients in self-management, encouraging them to care for themselves in the way they prefer.40 One important example where self-management is essential for cancer patients is symptom management. For example, pain is the number one reason people seek medical care and is a paradigm for other cancerrelated symptoms.18 When nurses engage with patients to provide education, counseling, or information technology, patients are empowered and pain management activities are improved.28,41,42 Promising interventions that assist patients in communicating with providers and in describing their pain have been tested and include: 1) individual coaching before an office visit,43 and 2) the use of written scripts along with psycho-educational interventions.44 Both interventions resulted in significant pain reduction and suggested that patients can be taught to effectively communicate their pain. While the cost of individual coaching intervention sessions might limit the widespread use of this approach, there may be other means to do this through virtual visits and eHealth applications. Selfmanagement is an important approach for patients to effectively manage chronic illnesses. Post and colleagues45 propose that patient communication training can help to address the need for patients to actively participate in their health care collaboratively with providers. Training patients to more effectively communicate with providers significantly increases patient participation in their health care and has a significant impact on health care outcomes.46,47 Patients with this type of communication training more actively seek information, more often state their treatment preferences, and provide more detailed information about their
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symptoms.48,49 Patient communication training has also been shown to improve patient adherence to treatment recommendations, as well as improvements in health outcomes related to diabetes, hypertension, and ulcer disease.50,51 These successes demonstrated in patients with common chronic diseases now must be evaluated in the cancer population. However, it is important to acknowledge that not all patients and families will be able to be active participants in the same way. Selfmanagement for cancer patients can be complex and readiness and ability to participate in one’s care can differ significantly. Patient-centered care, focusing on individual ability and motivation to engage in self-management, would identify those individuals where cancer information overload, or being overwhelmed by cancer information, is occurring and will necessitate additional support options for them.52
HEALTH DISPARITIES IN COMMUNICATION Effective patient-provider communication is an antecedent to self-management and is positively associated with quality care and self-efficacy, regardless of race.53 However, if racial disparities are present in patient-provider communication, selfmanagement can be compromised. For example when compared with white cancer survivors, Hispanic and Asian survivors report poorer overall communication with providers; Asians also report poorer follow-up care communication and care quality.53 Additionally, among patients with prostate cancer, Song and colleagues54 found that, compared with African Americans, white Americans had significantly greater mean scores of interpersonal treatment (P < .01) and prostate cancer communication (P < .001), and that better patient–provider communication was associated with more physician trust, less perceived racism, greater religious beliefs (all P-values <.01), and at least high school education (P < .05). Even in potential pre-cancerous conditions such BRCA1 mutations in African American women, research suggests that patient-provider communication about the genetic test is suboptimal.55
FUTURE OPPORTUNITIES As our health care delivery systems continue to evolve, there will be an increasing number of
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evidence-based eHealth communication interventions to extend and enhance patient-provider relationships. To be successful, communication skills training will need to be more integrated into health care providers’ education and extended to the patient and family. In this final section, we provide some insight into the shifting paradigm in patientprovider communication and how these changes might improve health outcomes and some factors that should be considered as health care providers make efforts to collaboratively engage with cancer patients. Although teaching communication skills to providers is not new, the paradigm for what is taught is shifting to include: establishing the consultation framework, checking skills, questioning skills, empathic communication skills, information organization skills and shared decision-making skills.56-58 A Cochrane review was performed in 2013 to evaluate communication skills training with a variety of health care providers and found that communication skills training increased providers’ ability to ask open-ended questions and to show empathy toward patients.59 Although communication skills training for providers is a promising approach to enhance both communication behaviors and attitudes among providers, more research needs to deduce the optimal training while also considering the financial challenges.60 Adaptable training that can be used among different types of providers has been shown to be beneficial in oncology, specifically in discussing death, dying, and end of life care goals, an often challenging topic.61 One example of a communication technique under evaluation that may make patients feel more empowered is teaching patients how to communicate using the same strategies most often used by health care providers. Situation, background, assessment, and recommendation (SBAR), has been described as a collaborative communication strategy that includes easy-to-remember techniques that provide for consistent, structured communication between members of health care teams.62 Communication begins with describing the current Situation. Next, the Background that led to the current situation is described. Based on the background and current situation, an Assessment or possible problem is determined. Finally, after the situation, background, and assessment, a Recommendation is made to resolve the situation. Structured communication techniques such as SBAR have been shown to improve patient safety
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in health care environments.63 Because SBAR uses a communication syntax familiar to health care providers, its use by patients when communicating with health care providers could lead to positive interactions while setting the tone for the remainder of the visit by enhancing credibility, trust,64 and positive self-presentation.65 Te Boveldt and colleagues66 suggest a conceptual model to empower patients in controlling cancer pain that focuses on pain treatment, active patient involvement in treatment, and the interaction of both. This conceptual model is supported by a study conducted by McDonald and colleagues,67 who found that nurses did not respond with more pain management strategies when patients described pain in their own words, or in their own words plus a pain intensity scale. This study suggests that patients may have better health outcomes, such as satisfaction with their care-seeking experience for pain management, if they use syntax familiar to health care providers. The Advancing Medical Professionalism to Improve Health Care (ABIM) Foundation launched Choosing Wisely in 2012 – a national initiative that centers on eliminating wasteful or unnecessary medical tests, treatments and procedures by making sure that conversations take place between providers and patients.68 The Choosing Wisely initiative includes communication education modules to aid providers in conversations with patients about overuse and unnecessary medical tests. Modules are designed for physician groups, but could be adapted or used by other providers, such as nurse practitioners. Each module contains a video welcome from the specific targeted provider, a pre-test, an introduction to Choosing Wisely, key skills for communication (eg, clear information, empathy, and confirming agreement), five recommendations, a post-test, and handouts. Many factors affect patient-provider communication, including social support. To facilitate patient and family communication skills, Groen and colleagues28 conducted an integrative review to identify conceptual components of patient empowerment in people with chronic diseases, especially cancer survivors, and to explore the contribution of existing and new information technology services to promote empowerment. They found that perceived support from community, family, and friends and perceiving oneself to be useful are vital to patient empowerment in oncology settings. Therefore, it would be important to assess patient support as well as level of activation in a patient’s health.
Because cancer patients often have complex treatment plans, health literacy is an important component of patient-provider communication. Therefore, an assessment of the health literacy of patients and caregivers is essential for their understanding and ability to act on the recommendations in treatment plans.69 Health literacy is influenced by education, culture, language, and the characteristics of health-related settings, for example, the amount of technology the patient must use.70 Health literacy skills include reading, writing, mathematics, speaking, listening, use of technology, networking, and rhetorical skills associated with requests, advocacy, and complaints. Some of these skills, if not all, are necessary for functioning in a number of health contexts: promoting and protecting health and preventing disease; navigating the health care system; actively participating in encounters with health care professionals; understanding, interpreting, and analyzing health information; understanding and giving consent; understanding and advocating for rights; and applying health information over life events and situations.70 Persons with limited health literacy report poorer health status, have less knowledge of disease management and health promoting behaviors, and are less likely to use preventive services.70 Although cancer diagnoses may be similar by name and/or presentation, each individual and family experiences cancer differently and therefore empowerment activities must be individualized. Thus, the overall goals and outcomes of patient empowerment through effective communication should not be predetermined by the health care providers, but should mutually be agreed upon as the result of thoughtful discussion with every patient/ family based on his/her own situation and preferences.23 For example, cancer survivors may benefit most from a plan of care that includes tailored spiritual care, increased family involvement, and efforts to connect with other indigenous cancer survivors.71 Efforts to enhance patient empowerment should include tools to improve health literacy, remote access to health services, and self-care mechanisms.72 Patient-provider communication significantly impacts health outcomes. Oncology nurses across all areas of practice, including clinical care, research, and education, can play a significant role in achieving positive outcomes by being a part of the paradigm shift to meet the dynamic needs of cancer patients with effective patient-provider communication.
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