US military veterans with myeloproliferative neoplasms (MPNs) endure a substantial symptom burden and limited access to care, indicating suboptimal management, according to the results of a cross-sectional survey published at the 2024 annual meeting of the American Society of Clinical Oncology by a research team led by Natasha Mathur, MD, of the George Washington University Hospital in Washington, DC.
The study used the validated MPN Symptom Assessment Form Total Symptom Score (MPN SAF TSS) to assess the MPN symptom burden of all veterans listed in the MPN Advocacy Education & International database from December 1, 2023, to January 22, 2024. The factors considered included risk levels, thrombo-hemorrhagic complications, medication use, information access, care, and service-connected benefits.
Of 61 respondents, 88% were male, 92% were caucasian, and 88% served during the Vietnam war. The mean age was 73±7, with MPN diagnosis at age 64±9.
Key findings included 56% polycythemia vera, 26% essential thrombocythemia, 16% primary myelofibrosis, 70% JAK2, 10% CALR, 3% MPL, 14% unaware of their mutation status, and 34% unaware of MPN risk status. Seventeen (28%) underwent phlebotomy, 64% used hydroxyurea, 29% ruxolitinib, and 3% interferon.
Regarding symptoms, fatigue and itching were the predominant and severe symptoms, with 43% reporting no symptom improvement. Twelve (20%) reported bleeding and 10% reported venous thrombosis after MPN diagnosis, while 13% reported arterial thrombosis before MPN diagnosis.
Regarding support and care, 22 (36%) are not seeing an MPN specialist and 61% are not seeing a hematologist at their local Veterans Affairs Medical Centers. Twenty-three (38%) did not seek a second opinion while 43% do not have a caregiver. Five (8%) received service-connected disability benefits.
“Limited access to care persists, necessitating enhanced support,” the authors wrote. “Efforts to enhance MPN awareness, specialized care, and support mechanisms are imperative for comprehensive management.”
Reference
Mathur N, Tiu A, Brazeau A. Patient reported outcomes among U.S. Veterans living with myeloproliferative neoplasms. Abstract #e18528. May 30-June 3, 2025. Chicago, Illinois.
