Myeloproliferative neoplasm patient symptom burden and quality of life: Evidence of significant impairment compared to controls

Abstract

The myeloproliferative neoplasms (MPN) including polycythaemia vera (PV), essential thrombocythaemia and primary myelofibrosis (PMF) are rare diseases contributing to significant morbidity. Symptom management is a prime treatment objective but current symptom assessment tools have not been validated compared to the general population. The MPN-symptom assessment form (MPN-SAF), a reliable and validated clinical tool to assess MPN symptom burden, was administered to MPN patients (n 5 106) and, for the first time, population controls (n 5 124) as part of a UK case-control study. Mean symptom scores were compared between patients and controls adjusting for potential confounders. Mean patient scores were compared to data collected by the Mayo Clinic, USA on 1,446 international MPN patients to determine patient group representativeness. MPN patients had significantly higher mean scores than controls for 25 of the 26 symptoms measured (P < 0.05); fatigue was the most common symptom (92.4% and 78.1%, respectively). Female MPN patients suffered worse symptom burden than male patients (P < 0.001) and substantially worse burden than female controls (P < 0.001). Compared to the Mayo clinic patients, MPN-UK patients reported similar symptom burden but lower satiety (P 5 0.046). Patients with PMF reported the worst symptom burden (88.3%); significantly higher than PV patients (P < 0.001). For the first time we report quality of life was worse in MPN-UK patients compared with controls (P < 0.001).

A spotlight on the management of complications associated with myeloproliferative neoplasms: a clinician’s perspective

“…Of note in symptom assessment, the MPN-SAF was administered in the MOSAICC (Myeloproliferative Neoplasms: An in -depth Case-Control) study to both patients with ET, PV and MF and population controls. MPN patients had significantly higher scores than the controls for 25 out of the 26 symptoms measures indicating that quality of life was significantly worse in MPN patients compared to controls [9].…”

Myeloproliferative Neoplasms: Fatigue, depression & hemoglobi

“…Of note, existing studies regarding fatigue within the MPN population have primarily utilized the Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF) [22][23][24][25][26].…”

“…In MPNs, fatigue is DOI: http://doi.org/10.17352/ahcrr.000019 identifi ed as a fundamental symptom of the underlying disease [18]. Researchers have identifi ed that patients with MPNs have severe symptom burdens that signifi cantly impact quality of life and functionality, with fatigue being most prominent [22][23][24][25][26].…”

“…Specifi c proinfl ammatory cytokines, including interleukin-1 beta (IL-1), tumor necrosis factor-alpha (TNF-), and interleukin 6 (IL-6) have been identifi ed as possibly leading to symptoms of fatigue and behavioral changes [19,39,40]. In [22][23][24][25][26]. Investigating the relationship between depression and symptoms of fatigue in the MPN population can assist in identifying optimal therapeutic options that may also enhance quality of life [22][23][24][25][26].…”

“…In [22][23][24][25][26]. Investigating the relationship between depression and symptoms of fatigue in the MPN population can assist in identifying optimal therapeutic options that may also enhance quality of life [22][23][24][25][26].…”