Abstract Background: Polycythemia vera (PV) is a chronic, JAK2-mutated myeloproliferative neoplasm (MPN) marked by erythrocytosis, increased thrombotic risk, and significant symptom and psychological burden. Despite its impact on quality of life (QoL), the burden and clinical significance of PV are often underestimated by clinicians, particularly outside of specialty settings, due to the historical underrepresentation of the patient voice in treatment planning and the fact that patients may not appear overtly ill. Misalignment between PV patient and clinician goals of treatment contributes to suboptimal management, reduced patient engagement, and poorer clinical outcomes. To better understand these gaps and promote patient-centered care, Haymarket Medical Education (HME) and the MPN Research Foundation conducted parallel surveys capturing patient and clinician perspectives on PV care, treatment goals, and clinical decision-making. Methods: Two independent surveys, one each developed for PV patients and clinicians caring for them, were co-authored by HME and the MPN Research Foundation. Survey questions were designed to assess similarities and differences between patient and clinician perspectives on PV disease burden, treatment goals, decision-making, and patient-clinician communication. A total of 249 patients and 27 clinicians completed the surveys between October and December 2024. Among patient respondents, 83% were aged 55 or older and 59% were diagnosed before 2020. Nearly all clinicians (96%) reported practicing in academic medical centers. Results: Differences were observed across several survey topics, including perceptions of diagnostic accuracy and timeliness. While all clinicians reported confidence in their ability to diagnose PV in a timely manner (70% “very confident,” 30% “somewhat confident”) only 64% of patients agreed or strongly agreed that they received a quick and accurate diagnosis, with 35% explicitly reporting that they did not. Notably, 82% of patients expressed confidence in their provider's ability to make an accurate diagnosis, despite the aforementioned gap in perceived timeliness. The most frequently cited barriers to timely diagnosis among clinicians were difficulty distinguishing PV from other MPNs due to overlapping symptoms (44%) and insurance or financial barriers (30%). Regarding treatment goals, when asked to rank their top three, clinicians prioritized improving patients' QoL (78%), slowing disease progression (74%), and normalizing blood cell counts (52%). Similarly, patients prioritized slowing disease progression (89%) and normalizing blood cell counts (51%), but placed distinct emphasis on improving energy levels (45%)—a component of QoL that may not be explicitly captured when framed as a broad clinical goal. Notably, less than half of patients (42%) included general QoL improvements in their top 3 goals. This misalignment was further reflected in shared decision-making. While 92% of clinicians reported regularly incorporating patients' goals and preferences into treatment decisions, only 61% of patients selected “Strongly agree” or “Agree” when asked whether their provider considered their goals when developing their treatment plan. Gaps in patient education were also observed. Nearly half of patients (43%) indicated they had not received adequate information or education about available treatment options. Additionally, 71% reported that their healthcare provider had not discussed clinical trial options with them. Conclusion: Findings from the concurrent surveys revealed discordance between clinician and patient perceptions across multiple domains of PV care, including time to diagnosis and patient experience with diagnosis, treatment priorities, shared decision-making, and patient education. Despite clinicians' confidence in their management strategies, patients reported limited involvement in treatment decisions, insufficient information about available therapies and clinical trial options, as well as mismatched treatment goals. These insights underscore the urgent need for the development of targeted education and related resources designed to enhance clinician-patient communication, align treatment decisions with patient goals, and support the delivery of more individualized, patient-centered care in PV.Study Sponsor Statement: The surveys were conducted as part of the development of a 2-part CME activity series supported by an educational grant from Incyte Corporation.
Gerds et al. (Mon,) studied this question.