Rare Blood Cancers Negatively Impact Quality of Life

A new survey found that patients with rare blood cancers have decreased quality of life, especially regarding their ability to work and perform daily activities. Findings also suggest that these patients experience significant emotional distress.

Novartis conducted the first international survey of patients with myeloproliferative neoplasms (MPN), specifically looking at patients with myelofibrosis, polycythemia vera, or essential thrombocythemia. The survey results were presented at the 58^th Society of Hematology Annual Meeting.

MPNs are a group of rare, deadly blood cancers. Myelofibrosis and polycythemia vera can cause symptoms such as fatigue, night sweats, itchy skin, enlarged spleen, and cardiovascular events. These 2 cancers are considered the most debilitating compared with essential thrombocythemia.

There were 699 patients included in the MPN LANDMARK Survey, which included patients from 6 countries, to gain a more detailed understanding of the impact these cancers have on quality of life, according to a press release from Novartis.

"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."

Patients reported that their cancers reduced their ability to perform daily activities by 40%, and patients also said the disease had a 35% impairment on their capacity to work, according to Novartis.

Patients who missed work over the previous week reported missing approximately 3.1 hours of work due to their disease.

Investigators also found that more than 75% of patients who were experiencing disease symptoms had a reduced qualify of life, with 83% of patients with myelofibrosis reporting this event.

Novartis said that these findings are consistent with previously published findings. Approximately 54% of patients with myelofibrosis, 45% of patients with polycythemia vera, and 64% of patients with essential thrombocythemia experienced fatigue over the past 12 months, which was the symptom patients most wanted relief from.

Additionally, patients also reported that they had anxiety regarding their disease. Approximately 34% of patients with myelofibrosis, 29% of patients with polycythemia vera, and 26% of patients with essential thrombocythemia experienced anxiety or worry.

"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 Claire Harrison, BMBCH, 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."