Abstract
Objective: To assess patient and physician understanding of symptom burden, treatment goal, disease management, and perceptions as well as to identify potential disparities pertaining to the understanding of patients and physicians about them to enable patient-physician alignment on optimal disease management plans that best address patient needs. Methods: The MPN landmark survey was conducted in China and was a cross-sectional survey of patients diagnosed with Ph-negative MPN and physicians treating patients with Ph-negative MPN from August 2018 to November 2018. Results: Total 100 physicians and 298 patients (ET 122, PV 116, and MF 60) participated in the survey; 90% of the physicians classified their patients as per a prognostic risk score; however, only 67% patients knew their score. The most common symptoms reported by the MF patients to the physicians as per both, frequency and severity were fatigue/tiredness (63% ) , inactivity (48% ) , and abdominal discomfort (47% ) . The most common symptoms of PV patients were dizziness/vertigo/light-headedness (63% ) , facial flushing (54% ) , and inactivity (48% ) . The most common symptoms of ET patients were dizziness/vertigo/light-headedness (58% ) , inactivity (49% ) , and fatigue/tiredness (40% ) . Patients with MF (62% ) showed larger emotional burden then those with PV (46% ) and ET (52% ) . Further, 19% and 30% patients reported that MPN has severely affected their productivity while working and performing daily activities, respectively. There was a need for caregivers, sometimes or often, among 47% of patients in China. Total 25% patients considered that the condition has not caused any financial hardship, 66% patients considered that the condition had caused some financial hardship, 9% patients considered that the condition had caused great financial hardship. At diagnosis, approximately 19% MF, 23% PV, and 26% ET patients were observed by the physicians instead of being prescribed a drug treatment. MF patients were in alignment with physicians on major treatment goals other than cure, including better QOL, symptom reduction, and slow/delayed disease progression. However, PV (82% ) and ET (80% ) patients had a different interaction with physicians; they considered first treatment goals other than cure was symptom improvement. Satisfaction with patient communication was reported by 88% of the physicians; satisfaction with physician communication was reported by 89% of the patients. Further, 18% patients admitted to feeling a lot worse than their physician was aware of, indicating the need for better patient-physician communication. Conclusions: MPN patients with high symptom burden have a low QOL and large emotional burden that severely affects productivity while working and causes financial hardship. This study highlighted the need for provided patients with additional support for managing emotional health. More open communication would enable patient-physician alignment on the treatment goals and optimal disease management plans that best address patient needs.