Novartis survey uncovers real-world burden of myeloproliferative neoplasms (rare blood cancers) on daily activity and ability to work

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Myeloproliferative neoplasms (MPNs) are a group of related and rare blood cancers in which bone marrow cells responsible for the body’s blood cells develop and function abnormally. Specific MPN conditions include myelofibrosis (MF), polycythemia vera (PV) and essential thrombocythemia.

Novartis  announced results from the first-ever international survey of patients with myeloproliferative neoplasms (MPNs), specifically myelofibrosis (MF), polycythemia vera (PV) or essential thrombocythemia (ET), which indicate that the majority of patients living with these MPNs experience a reduced quality of life. The findings also reveal that many patients struggle with emotional distress and experience a negative impact on their ability to work. These data were presented for the first time at the 58thAmerican Society of Hematology (ASH) Annual Meeting in San Diego, CA.

MPNs are a group of rare and life-threatening blood cancers. People living with an MPN can have a poor quality of life and shortened survival rate. Two of the most debilitating MPNs are MF and PV, as compared to ET. MF and PV are associated with a range of symptoms and complications, including fatigue, night sweats, itchy skin, enlarged spleen and cardiovascular events. The international MPN LANDMARK Survey included 699 patients with representation across six countries and four continents and was conducted to gain a better understanding of how MPNs impact a patient’s quality of life, activities of daily living, work productivity and emotional well-being.

“Rare blood cancers like MPNs are often not well-recognized, yet these diseases can have a significant impact on even the simplest tasks in a patient’s daily life,” said Bruno Strigini, CEO of Novartis Oncology. “We hope the survey results illuminate the awareness of these debilitating blood cancers, emphasizing the need to help optimize patient care.”

In the international survey, patients reported that their disease negatively impacted their ability to complete daily activities by 40%. Patients also noted a 35% impairment on their capacity to work. Furthermore, employed patients who missed work over the last seven days due to their disease reported missing an average of 3.1 hours due to their disease and/or symptom burden.

“These results help quantify the daily difficulty of living with an MPN, which can help patients explain disease burden to family, friends, colleagues and physicians who may be unfamiliar with these conditions,” said Dr. Claire Harrison, Guy’s and St. Thomas’ NHS Foundation Trust, London, United Kingdom. “The survey results also help paint the full picture of the impact of the disease, which will enable physicians to manage the total patient in hopes of increasing quality of life.”

Results also demonstrated that more than 75% of patients who experienced symptoms suffered a significant reduction in quality of life due to their symptoms (83% of MF patients, 72% of PV patients, 74% of ET patients); these numbers are consistent with previously-reported literature. The most commonly-reported symptom across disease areas in the last 12 months was fatigue (54% of MF patients, 45% of PV patients, 64% of ET patients), which was also the symptom patients cited they most wanted to resolve. In addition to physical symptoms, approximately one-third of patients in the study felt anxious or worried about their disease, with the greatest impact seen on those with MF and PV (34% of MF patients, 29% of PV patients, 26% of ET patients).

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