BCR-ABL negative myeloproliferative neoplasms (MPN) represent a heterogeneous group of clonal hematopoietic disorders and are comprised of myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia (ET). Most MPN share relatively “indolent” clinical courses, but many patients experience compromised quality of life (QoL) of varying degrees due to MPN associated organomegaly, cytopenia, and a broad range of constitutional symptoms [1,2]. The identification of distinct recurrent mutations, namely JAK2 V617F [3], has led to a better understanding of the underlying pathophysiology. However, such advances in knowledge were not paralleled with advances in treatment options, thus many questions regarding optimal MPN disease burden management remain unanswered. All in all, with an expected increment in both incidence and prevalence, MPN poses a cumulative threat to public health including but not limited to substantial economic and social burdens.

A descriptive survey study provides an important set of information on a patient’s perception and experience of a disease, which assists in recognizing and resolving unmet medical needs. Resonating such sentiment, MPN Landmark Health Survey was conducted in the United States [4,5] and other countries [6] to comprehensively evaluate the impact of MPN on patients as well as on attending physicians. H ere, we report the experience of Korean MPN patients and their attending physicians.

Discordance between patient and physician perception of disease is unfortunately not unusual in the medical field, and especially true for chronic illnesses [10,11]. MPN is interesting in this regard because although they are “neoplastic,” in most cases the disease is associated with a long clinical course, and the main treatment goal is heavily geared towards “symptom relief” rather than “cure.” In such a scenario, an accurate understanding of the disease burden and treatment goals is important for the optimization of patient care and subsequently patient outcomes. The importance of our study lies in that we investigated the discrepancy in experience and expectations between Korean MPN patients versus physicians.

The vast majority of the patients reported that their risk score was either low (29.70%) or intermediate (42.57%) (Table 1). This can explain the generally lower MPN-SAF TSS in our patients (Supplementary Table 2) compared to those from the United States [4]. It is noteworthy that 17.82% of the patients did not know their risk score, indicating there is room for better patient education about their disease. It is also important to recognize that lower MPN-SAF TSS did not mean there were no impediments caused by the disease, and 76.19% of all patients either strongly agreed or somewhat agreed that MPN related symptoms were reducing their QoL (Supplementary Table 3). Such gap suggests that perhaps patients are living with symptoms that they do not fully recognize as being related to MPN. This again suggests better patient education on the physician’s part but also highlights the importance of regular symptom assessments for treatment decision guides.

The most prominent discordance between patients and physicians concerned treatment goals. While physicians answered better QoL is the main treatment goal for all MPN patients regardless of subtype, patients reported symptom improvement was their main treatment goal regardless of MPN subtype (Fig. 1). Such differences might have resulted from the difference in understanding the underlying pathophysiology of the disease. As for which symptom requires most urgent attention, physicians thought their patients were most hampered by fatigues/tiredness, but the symptom patients would most like to resolve differed among MPN subtypes. Interestingly most physicians strongly agreed that QoL is compromised by symptoms for MF patients, but not as much for PV or ET patients. Somewhat biased perception of physicians probably stems from previous reports [12–14]. Coinciding with the general understanding of MPN prognosis, physicians responded that the development of effective drugs/therapy should be most promptly addressed for MF and ET, while the cure is the ultimate goal for PV (Fig. 2C). It is important to move beyond such biases and listen to the patients for improved patient satisfaction.

Even so, most patients were satisfied with patient-physician communications (Fig. 2B). Notably, physicians were less satisfied with their communications with patients. Especially, physicians and patients felt differently about the treatment decision-making process. Most patients felt in volved in the treatment decision-making process (Fig. 3), but approximately half of the physicians felt either it was unnecessary to involve the patients or that treatment decision should physician-directed (Fig. 3D and 3E). Patients also reported that physicians seemed more interested in discussing blood counts rather than their symptoms (Fig. 3F), and thus there was not enough time to talk about their symptoms (Fig. 3G). Whether patient-centric communications lead to better patient adherence and treatment outcomes is yet to be seen in MPN settings, but our findings highlight the need for continuous efforts to bridge the gap between patients and physicians.

Another interesting aspect of our study is the vicarious exploration of how cultural factors impact the clinical encounter between healthcare providers and patients. We saw that more Western physicians proactively asks how patient is feeling and their symptoms [5] compared to Korean doctors, whereas treatment goals were similar across the globe [4,6]. Perhaps related to the difference in communication styles, more Western patients felt satisfied with physician management (very satisfied Western MF patients 64.3% vs. Korean MF patients 48.7%; PV 60.5% vs. 60.0%; ET 58.0% vs. 33.3%) and communications (very satisfied Western MF patients 66.2% vs. Korean patients 38.46%; PV 57.1% vs. 76.0%; ET 54.9% vs. 38.5%) compared to Korean patients [5]. Since it has been suggested that patient’s cultural approaches to disease etiology and illness affect the patient’s care-seeking behaviors, treatment choices and compliance [15], a culturally sensitive approach to chronic disease like MPN may lead to patient adherence and improved health outcomes.

As with previous studies reporting the results of the Landmark Health Survey [4–6,16], major pitfalls of this report come from the nature of the study. First, because this survey heavily relied on patient’s retrospective recollection and awareness of their disease and treatment, some differences can be due to patient error. Especially because responses were not matched between a physician and the specific patient under his/her care, data comparison and interpretation can be difficult. Secondly, there were only 30 physicians, in comparison to 105 patients, who participated in this study. All physicians worked in either university or teaching hospitals, thus there may have been a selection bias.

In conclusion, our study provides comprehensive insights into the impacts of MPN on both patients and physicians. Our study suggests that there are room for better monitoring of symptoms and patient-physician communications. In particular, continuous efforts to close the gap between patients and physicians regarding treatment goals and treatment decisions are necessary for improved overall satisfaction.