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Abstract

Background: Myeloproliferative neoplasms (MPNs), that is, essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF), are a group of MPNs that can lead to significant rates of morbidity and mortality among affected patients. Symptomatic burden in MPNs is present in most of MPN patients. We sought to use the broadly applicable instrument MPN symptom assessment form (MPN-SAF) to assess symptoms in MF, ET and PV among populations of Qatar. Methods: Using the MF-SAF as a base instrument, we added several key additional symptoms previously identified as present in all subtypes of MPNs including headaches, concentration, dizziness, insomnia, sexual problems and mood changes on a 0 (absent) to 10 (worst-imaginable) scale. The MPN-SAF was administered jointly with the EORTC-QLQ-C30 as the co-validation instrument using prospective cohorts in Qatar. Results: MPN-SAF patient data: 123 MPN-SAF surveys were administered (English (45%), Arabic (55%) in 45 ET patients (36.5%); 35 PV patients (28.5%); 15 MF patients (12.2%); 28 MPN unclassified (22.7%); an average of 7.8 years (range 0 - 43 years)) from their MPN diagnosis. Participants were of age range (26 - 58 years) and gender (52% female) characteristic of disease. Prior hemorrhage (10%) and thrombosis (25%) were frequent. 78% of the patients currently receive cytoreductive therapy and 87% received cytoreductive therapy in the past. Patients and Symptomatic Burden: 19 items assessed in the MPN-SAF demonstrated consistently that the most common symptoms were decreased quality of life (93%), fatigue (84%) and insomnia (65%). The least common symptoms (<50% prevalence) were fevers (15%) and weight loss (10%), although symptoms are present in all 3 MPN subgroups. The majority found the MPN-SAF easy to understand (92%) and "addressed most of my MPN symptoms" (95%). Comparison to EORTC-QLQ-C30: Strong correlations existed between individual items represented on both the MPN-SAF and the EORTC-QLQC30 including pain, fatigue, appetite and insomnia (all p <0.001). Symptoms characteristic of advanced disease including weight loss, fever, and cough displayed lower Pearson correlations (r= 0.46, -0.08, and 0.38 respectively). Conclusions: The MPN-SAF is a comprehensive and reliable instrument which is available in multiple languages (including Arabic and English) to evaluate MPN-associated symptoms.

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/content/papers/10.5339/qfarf.2012.BMP29
2012-10-01
2020-10-30
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http://instance.metastore.ingenta.com/content/papers/10.5339/qfarf.2012.BMP29
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