PF681 IMPACT OF MYELOPROLIFERATIVE NEOPLASMS (MPNS) AND PERCEPTIONS OF TREATMENT GOALS AMONGST PHYSICIANS AND PATIENTS IN 6 COUNTRIES: AN EXPANSION OF THE MPN LANDMARK SURVEY
Authors: Xiao Z. , Chang C.‐S. , Morozova E. , Bang S.‐M. , Alzahrani M. , Mycock K. , Rajkovic I. , Siddiqui A. , Saydam G. 
Published: June 2019

Background:

Previous patient (pt) and physician surveys in North America, Europe and Japan have extensively documented the high symptom burden associated with myeloproliferative neoplasms (MPNs) such as myelofibrosis (MF), polycythemia vera (PV) and essential thrombocythemia (ET). No such data are available for the rest of the world.

Aims:

To evaluate pt‐ and physician‐reported perceptions of symptom burden, treatment goals and disease management.

Methods:

A cross‐sectional survey of pts with MPNs and physicians treating pts with MPNs was conducted in China, Turkey, Russia, Taiwan, South Korea and Saudi Arabia. No pt data were collected in Saudi Arabia. Independently recruited respondents completed an online survey measuring their perceptions of the impact of MPNs.

Results:

A total of 506 pts (MF: n = 147; PV: n = 168; ET: n = 191) completed the survey (52% female; median patient age ± SD: 60.0 ± 10.69 years). Most pts were experiencing symptoms for ≤1 year prior to MPN diagnosis (83%). A total of 240 physicians (68% hematologists, 32% hemato‐oncologists) completed the survey. At consultation, only 36% of physicians used a validated symptom assessment form; 39% used their own rating method. Many pts also did not recognize that their symptoms could be MPN‐related. For example, fatigue/tiredness was one of the most commonly reported symptoms to physicians (69% MF, 40% PV, 54% ET); however, many pts did not think their fatigue resulted from MPNs (18% MF, 25% PV, 18% ET). Consistent with this, physicians (43%) indicated that pts could only identify few/some of their symptoms as MPN‐related.

A high proportion of physicians (94%) and pts (82%) felt that MPN symptoms reduce a pts’ quality of life (QoL). Furthermore, 83% of physicians reported that even mild‐moderate symptoms can have a negative impact on QoL.

Despite this, while more physicians than pts ranked a better QoL as a key treatment goal, reducing MPN symptoms seemed to be a priority more commonly for pts (72% MF; 68% PV; 68% ET) than physicians (61% MF, 43% PV, 55% ET) (Figure). Slowing/delay in disease progression as a treatment goal was more common for physicians than pts in PV.

As well as a high symptom prevalence, pts reported a substantial emotional burden associated with their disease: 78% MF, 59% PV and 57% ET pts were anxious/worried about their condition. Overall, a high burden on activities of daily living (ADL) was reported, especially in MF.

Only 28% physicians felt in complete agreement with their pts on treatment goals. Furthermore, one quarter of pts were dissatisfied with their doctor's understanding and support of their treatment goals, and pts reported often feeling worse than their physician was aware (62% MF; 42% PV; 47% ET). Interestingly, approximately half of pts still expressed high satisfaction with their doctor's management and treatment of their MPN.

Summary/Conclusion:

This study revealed a lack of understanding of MPN symptoms among pts; physicians agreed that their pts could identify few MPN‐related symptoms. Although physicians acknowledge adverse impact of symptoms on QoL, more pts than physicians see reducing symptoms as a treatment goal. Despite reported pt satisfaction in disease management, pt‐ physician disconnects are apparent, demonstrating a need for improved communication. A need for standardization in symptom assessment was also highlighted, which could result in improved pt understanding of MPNs. Subtle differences from survey results in other geographies would be discussed.

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