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CME
Empowering the Patient Voice: Shared Decision-making Strategies in ET and PV
Physicians: Maximum of 0.25 AMA PRA Category 1 Credit™
Released: March 31, 2026
Expiration: September 30, 2026
Activity
Why Shared Decision-making Matters in ET and PV
ET and PV are myeloproliferative neoplasms (MPNs) associated with thrombocytosis and erythrocytosis, respectively.1,2 Both ET and PV increase the risk of thrombosis. Management is lifelong, individualized, and includes aspirin, phlebotomy, and cytoreduction.3 MPNs are heterogeneous in presentation, including variable symptom burden leading to complex treatment choices. SDM helps in building rapport, aligning care with patient values, personalizing treatment, and enhancing adherence to treatment plans by ensuring that the patient understands the “why” behind the treatment approach. In the initial visit with patients with ET and PV, it is important to give a brief introduction to what MPNs are, the pathophysiology of these diseases, and the potential disease complications to anticipate (eg, thrombosis, symptom burden). This needs to be done in a manner that is tailored for the patient at their level of health literacy and with consideration to their preference for information.
Examples of Shared Decision-making in ET/PV
SDM in ET/PV starts with an open discussion of each diagnostic or management option in relation to a specific goal, with recognition of the uncertainties.4-6 For example, in discussing whether a bone marrow biopsy is required, the decision should be made in the context of the need for disease classification, the baseline/prognostic value, and the probability that the result will or will not change disease management.7-9
Management goals are tailored to the individual, rather than a “one-size-fits-all” strategy. For example, guidelines recommend keeping hematocrit less than 45% in PV to minimize the risk of thrombosis and manage symptoms, but many patients find better symptom control at a slightly lower level.3 Limited evidence is available for optimal white blood cell or platelet counts, although normalizing both is frequently a goal of therapy. A discussion of the lack of evidence supporting specific targets is warranted. Understanding the goal of therapy, be it symptom management or reducing thrombosis risk, is important.
As a result of the longitudinal nature of ET/PV care, SDM must also incorporate lifestyle and caregiver support factors that have a significant impact on the daily experience.10 Examples of this include physical activity, nutrition, sleep, skin care, hydration, smoking cessation, and symptom journaling. In addition, access to reputable information resources is a crucial aspect of the process.
The Patient Perspective
Some patients will want to participate extensively in their care and will come to the appointment with a plethora of questions on the disease.11,12 Others may want their HCPs to make decisions for them. Family dynamics and cultural norms also play a role in the SDM process.13 Identifying patient and caregiver preferences will ensure that all patients feel heard and appreciated, even when decisions are complex and evidence is evolving. This is why rapport and trust building are crucial aspects of the process for patients and HCPs. When a patient feels heard and understood, even when information appears to be unrelated to their disease, this can ultimately provide the best care for patients. As an HCP, taking a moment to step away from the computer, making eye contact, and summarizing key points in writing will help patients feel valued and heard. Such small but deliberate acts provide a basis for long-term collaborative decision-making in the management of a chronic disease.
Potential Benefits of Shared Decision-making
I think primarily SDM results in a better alignment of care when evidence is shared with patients. It helps them to understand what to expect in terms of adverse events and the goals of therapy. Confidence and satisfaction are increased when the patient knows that their preferences have been part of the decision-making process. Patients who engage in SDM are likely to have better treatment adherence.4,10,14,15
SDM may also decrease anxiety that is prompted by conflicting information from many sources. Explaining the reasoning and evidence behind our treatment recommendations leads to a deeper understanding by the patient and lowers anxiety.
Types of Educational Resources for Patients With ET/PV
SDM in ET/PV can be enhanced by ensuring that patients have access to trustworthy, carefully screened educational resources that help them understand their disease and engage effectively in discussions about their care. Patients may come to their appointments after researching social media groups, online forums, or AI platforms. Guide patients to trusted sources, including national patient advocacy groups, expert-developed education materials, and reliable clinical information websites.
Patients may also find it useful to have access to resources that help them self-monitor, connect with others with ET/PV, and focus on the whole person’s wellness. Symptom journals and downloadable assessment tools enable patients to write down their symptoms, side effects, and good things that have happened, and then bring them to the appointment later. Lifestyle counseling can also help support patients’ engagement by pointing out ways in which treatment outcomes can be affected. These might include discussing the importance of hydration, nutrition, physical activity, and smoking cessation.
Barriers to Shared Decision-making
Physician surveys report that time constraints are a major barrier to SDM in oncology, including hematologic malignancies.5,5,16 An additional barrier to SDM comes from the wide range of health literacy levels among patients. Some patients can be very knowledgeable, having done extensive research on treatments or clinical trials, and may come with their own preferences. Sometimes those preferences are not aligned with their symptoms, specific disease characteristics, and expert recommendations. On the other hand, many patients have low health literacy, making it challenging for HCPs to convey important information about risks, complications, and side effects of treatment so that the patient can engage in the decision-making process. Family dynamics and cultural norms can also play a role in decision-making. In some societies, the family assumes responsibility and may limit the information shared with the patient to protect them.
Shared Decision-making in ET/PV Beyond Patients and Physicians
SDM in ET/PV extends beyond the patient–physician dyad and relies on collaboration across the entire team of caregivers. Advanced practice providers, such as nurse practitioners and physician associates, will often alternate visits with physicians and play a key role in reinforcing expectations, monitoring symptoms, and assisting patients in making decisions. Pharmacists also contribute invaluable expertise regarding drug–drug interactions, medication timing, adherence challenges, and monitoring between visits.17 Oncology social workers may also play a role in SDM, particularly in the setting of palliative care.18,19 Alliances between academic medical centers and community oncology practices improve patient care and narrow the gap between care provided at major academic centers and community settings.20
Effective SDM depends on maintaining clear documentation of patient-specific goals, risks, and prior treatment experiences so every team member can support the patient. By engaging the full multidisciplinary team, HCPs create a more cohesive, informed, and patient-centered decision-making environment.
Key Takeaways for Shared Decision-making in ET/PV
Effective SDM in ET/PV means aligning therapy with patient values, explicitly linking each recommendation to what matters most to the individual. HCPs should acknowledge areas of uncertainty and offer the pros and cons of each option. Clear, bidirectional communication supports adherence, helps align expectations, reduces anxiety, and sustains engagement over a chronic care journey. Proactively removing barriers and activating the full care team creates a cohesive, patient-centered environment that minimizes confusion, improves safety, and ultimately improves outcomes.
