In this edition, ASH Clinical News Associate Editor Beth Faiman, CNP, PhD, describes the role of shared decision-making in a patient-centered encounter.
Most people have heard about the topic of shared decision-making (SDM), when patients and providers discuss treatment options and mutual goals to arrive at the "best" treatment decision for the patient. SDM has been recognized as an important component of a patient-centered encounter, and numerous studies have highlighted the benefits of SDM across disease states, including improved treatment adherence, less patient decisional regret, and decreased health expenditures.1
The Centers for Medicare & Medicaid Services validated the importance of SDM in 2015, when it required the practice as a condition of reimbursement for lung cancer screening. Failure to document the SDM discussion can lead to denial of coverage of services. And in 2018, a revised Medicare coverage policy for implantable cardioverter-defibrillators mandated an SDM interaction be conducted and documented prior to implantation of the device for primary prevention of sudden cardiac death.
In the era of high costs of services (such as chimeric antigen receptor T-cell therapy) and the potential decrease in health-related quality of life with cumulative treatments over time, are hematologists at risk for similar SDM mandates to ensure patients are fully aware of the trade-offs of therapy?
What Does an SDM Encounter Look Like?
Whether it is formally acknowledged or not, most hematology practitioners employ the principles of SDM in routine clinical practice. For example, many centers mandate that a patient and provider sign a consent form before starting intravenous chemotherapy. Obtaining consent in this way can be thought of as a first step to a complete SDM discussion. The health care provider could easily take the process further to make sure the patient and caregiver are fully informed and knowledgeable about potential side effects, patient burden (such as trips to the hospital, which often also affect the caregiver), or the need to take daily oral medications with potentially high out-of-pocket copays.
There are several strategies to enact SDM in daily practice, but the easiest for me to adopt was the SHARE Approach, developed by the Agency for Healthcare Research and Quality (AHRQ). This comprehensive tool was designed to help health care providers have an SDM dialogue with patients about their potential treatment options and, ultimately, decide which best suits their treatment goals (FIGURE).
Here is a three-step example of a successful SDM encounter in the real world:
- The physician or health care provider reviews treatment options with the patient, then tells the patient why one treatment is better than the other, based on his or her knowledge of research data, assumed patient preferences, and available treatments and clinical trials.
- The patient and/or caregiver becomes engaged in the discussion and asks appropriate questions. Is the health care provider's recommendation based on efficacy? Safety? Or perhaps quality versus quantity of life? What are the risks/trade-offs with the more efficacious procedure?
- The patient and health care provider mutually agree to initiate treatment after a discussion of the risks, benefits, and alternatives to various treatments, often with a check-in to review the decision after the new treatment has started.
The result of this process (which sounds easy, right?): Patients are more satisfied with the treatment decision and generally happier with the provider and treatment team, since they had a voice in the matter.
More Engagement, Better Satisfaction
Several studies have supported the use of SDM across nonmalignant and malignant hematology. In one study of patients with hemophilia, investigators found that presenting visual information on an individual's pharmacokinetic profile and bleed history during discussions enhanced patient-provider communication, increased patients' treatment adherence, and improved patients' understanding of their disease.2
SDM also can be an important component of clinical trial participation. In a study of people living with HIV/AIDS, researchers evaluated patient characteristics and perceptions that influenced decision-making regarding clinical trial participation. "Altruism," or the perceived benefit to others, was listed as the most important factor in trial participation and, although patients reported little knowledge about clinical trials in general, nearly all learned about trials through their medical provider. Their findings highlight the importance of relevant patient education during SDM patient encounters, which can lead to improved patient decisions and satisfaction.3
Many patients with leukemia, lymphoma, and multiple myeloma (MM) are living longer than ever due to advances in drug discovery and adoption of new therapies over the past two decades. Unfortunately, many of these drugs carry toxicities – in the form of clinical adverse events and financial burdens due to the high costs of treatment – which provide more opportunities for SDM discussions.
Research supports the multidisciplinary team approach to SDM in hematologic malignancies, which investigators have demonstrated tends to result in better patient satisfaction, less treatment regret, and improved adherence.4 For example, a recent study of patients with chronic lymphocytic leukemia (CLL) investigated whether a multidisciplinary educational approach affected patient knowledge of his or her disease and attitude toward SDM encounters.5 In the study, patients, lay navigators, physicians, and nurses/advanced practice providers (APPs) were educated about SDM and CLL treatment approaches. For patients, investigators measured changes in their desire for and perception of SDM before and after the education intervention; for clinicians and lay navigators, they measured changes in knowledge of CLL and perception of SDM. After the intervention, the percentage of patients desiring SDM increased from 47% to 67%. Patient satisfaction with his or her oncologists' explanations of therapy also increased significantly from 83% to 95% (p=0.03).
The program also had a positive effect on CLL knowledge among lay navigators (correct responses on a survey about CLL biology, treatment options, and side effects increased from 36% pre-intervention to 63% post-intervention) and nurses/APPs (an increase from 35% to 69%). Physicians' level of CLL knowledge remained high (at 85% and 87%).
Another exploratory study identified factors that influenced treatment decisions in adults with acute myeloid leukemia (AML).6 The greatest barriers to reaching an agreement on treatment course were: a perceived lack of treatment options for AML, the possibility of side effects, and how the diagnosis and subsequent treatment would affect the patients' relationships, daily life, and ability to complete certain tasks.
For patients with MM who, in most instances, have numerous treatment options available, SDM also can take patient satisfaction with treatment into account. In a recent analysis evaluating patient-reported attributes affecting treatment satisfaction, researchers found that the following factors led to higher levels of satisfaction: better Eastern Cooperative Oncology Group performance status, less overall time spent receiving treatment, and a preferred oral route of treatment administration.7 These variables can therefore be considered when determining next therapies during the SDM encounter.
In addition, a recent review acknowledges that depth of response has been associated with improved quality of life in patients with MM, and may be an important surrogate for treatment success, provided that therapy is well tolerated. However, the authors cautioned that the "traditional approach of using the most effective therapy does not take into consideration psychologic and socioeconomic factors that can result in significant burden to the patient."8 They conclude that a multidisciplinary team approach, with a focus on SDM based on patients' goals, should be emphasized.
The Future of Multidisciplinary SDM
It is reasonable to think that it is only a matter of time before SDM discussions are required for reimbursement of hematology services, given the high costs of health care, the cumulative toxicities of therapy, and the potentially enormous clinical, financial, and emotional burden to patients and caregivers – all of which can have deleterious effects on patients' quality of life.
But, it is unreasonable in the current health care system, with all our responsibilities of care, to assume the physician should take the lead and have independent SDM discussions without a team approach to care.
In the coming years, hematologists should work to implement SDM in their practices by engaging a multidisciplinary team. APPs and pharmacists are well positioned to engage in treatment discussions; social workers can address financial and psychosocial issues surrounding potential treatments and can direct patients to resources for copay assistance and transportation.
Nurses are among the most trusted and invaluable members of the health care team and are skilled at bridging the gap between patients and providers. As a "direct line" to patients, these team members can help answer questions and provide resources and reassurance about the physical and psychosocial effects of therapy for patients with malignant and nonmalignant hematologic disorders.
It often takes a village to meet the needs of patients in a patient-centered care model.
- Faiman B, Tariman JD. Shared Decision Making: Improving Patient Outcomes by Understanding the Benefits of and Barriers to Effective Communication. Clin J Oncol Nurs. 2019;23:540-2.
- van Balen EC, Krawczyk M, Gue D, et al. Patient-centred care in haemophilia: Patient perspectives on visualization and participation in decision-making. Haemophilia. 2019 September 17. [Epub ahead of print]
- Burkhalter JE, Aboulafia DM, Botello-Harbaum M, Lee JY. Participant characteristics and clinical trial decision-making factors in AIDS malignancy consortium treatment trials for HIV-infected persons with cancer (AMC #S006). HIV Clin Trials. 2018;19:235-41.
- Nejati B, Lin CC, Aaronson NK, et al. Determinants of satisfactory patient communication and shared decision making in patients with multiple myeloma. Psychooncology. 2019;28:1490-7.
- Rocque GB, Williams CP, Halilova KI, et al. Improving shared decision-making in chronic lymphocytic leukemia through multidisciplinary education. Transl Behav Med. 2018;8:175-82.
- Crawford R, Sully K, Conroy R, et al. Patient-centered insights on treatment decision making and living with acute myeloid leukemia and other hematologic cancers. Patient. 2019 August 28. [Epub ahead of print]
- Chari A, Romanus D, DasMahapatra P, et al. Patient-Reported Factors in Treatment Satisfaction in Patients with Relapsed/Refractory Multiple Myeloma (RRMM). The Oncologist. 2019 August 1. [Epub ahead of print]
- Seitzler S, Finley-Oliver E, Simonelli C, Baz R. Quality of life in multiple myeloma: considerations and recommendations. Exp Rev Hematol. 2019;12:419-24.