Differences in treatment goals and perception of symptom burden between patients with myeloproliferative neoplasms (MPNs) and hematologists/oncologists in the United States: Findings from the MPN Landmark survey

Abstract

BACKGROUNDThis analysis of the myeloproliferative neoplasm (MPN) Landmark survey evaluated gaps between patient perceptions of their disease management and physician self‐reported practices.METHODSThe survey included 813 patient respondents who had MPNs (myelofibrosis [MF], polycythemia vera [PV], or essential thrombocythemia [ET]) and 457 hematologist/oncologist respondents who treated patients with these conditions.RESULTSGreater proportions of physician respondents reported using prognostic risk classifications (MF, 83%; PV, 59%; ET, 77%) compared with patient recollections (MF, 54%; PV, 17%; ET, 31%). Most physician respondents reported that their typical symptom assessments included asking patients about the most important symptoms or a full list of symptoms, whereas many patient respondents reported less specific assessments (eg, they were asked how they were feeling). Many patient respondents did not recognize common symptoms as MPN‐related. For example, approximately one‐half or more did not believe difficulty sleeping resulted from their MPN (MF, 49%; PV, 64%; ET, 76%). Physician respondents underestimated the proportion of patients who had symptomatic PV or ET at diagnosis compared with patient respondents. There was discordance regarding treatment goals: among patient respondents with MF or PV, “slow/delay progression of condition” was the most important treatment goal, whereas physician respondents reported “symptom improvement” and “prevention of vascular/thrombotic events,” respectively. Finally, more than one‐third of patient respondents were not “very satisfied” with their physician's overall management/communication.CONCLUSIONSThe care and satisfaction of patients with MPN may be improved with increased patient education and improved patient‐physician communication. Cancer 2017;123:449–458. © 2016 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society.

Emerging treatments for classical myeloproliferative neoplasms

“…In these chronic conditions, the apparent and sometimes striking mismatch between physician perception of and the patient's stated priority for management demonstrated in the landmark study is a matter for reflection and review if proven in a wider study (Figure 1). 126 Another interesting disconnection in our therapeutic strategies for these illnesses is well demonstrated in MF, where prognostic data are used only in deciding whether to consider transplantation or not.…”

The Myeloproliferative Neoplasm Landscape: A Patient’s Eye View

“…Clear communication between the patient and physician is therefore essential if symptoms are to be recognized and managed. However, the Landmark study revealed that, similar to other oncology settings [64,65], there is often a marked discord between physician and patient perceptions of MPN, its treatment and impact, and how well these issues are discussed and communicated [26]. Particularly striking differences were found in aspects such as management, treatment goals, and expectations, with marked discord between what patients and physicians reported having been discussed.…”

Do All Patients With Polycythemia Vera or Essential Thrombocythemia Need Cytoreduction?

“…Although progression is a concern, vascular risk has a stronger influence on a physician's therapeutic decision-making. 15 There are multifactorial contributions toward MPN-associated thrombosis, including age and thrombosis history, sex, cardiovascular risk, mutation type and burden, inflammatory stress, and other contributors. 16 However, risk classification is still conventional and somewhat generic.…”