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Scherber, Robyn; Dueck, Amylou C.; Johansson, Peter; Barbui, Tiziano; Barosi, Giovanni; Vannucchi, Alessandro M.; Passamonti, Francesco; Andreasson, Bjorn; Ferarri, Maria L.; Rambaldi, Alessandro; Samuelsson, Jan; Birgegard, Gunnar; Tefferi, Ayalew; Harrison, Claire N.; Radia, Deepti; Mesa, Ruben A.
Blood, 07/2011, Letnik: 118, Številka: 2Journal Article
Symptomatic burden in myeloproliferative neoplasms is present in most patients and compromises quality of life. We sought to validate a broadly applicable 18-item instrument (Myeloproliferative Neoplasm Symptom Assessment Form MPN-SAF, coadministered with the Brief Fatigue Inventory) to assess symptoms of myelofibrosis, essential thrombocythemia, and polycythemia vera among prospective cohorts in the United States, Sweden, and Italy. A total of 402 MPN-SAF surveys were administered (English 25%, Italian 46%, and Swedish 28%) in 161 patients with essential thrombocythemia, 145 patients with polycythemia vera, and 96 patients with myelofibrosis. Responses among the 3 administered languages showed great consistency after controlling for MPN subtype. Strong correlations existed between individual items and key symptomatic elements represented on both the MPN-SAF and the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-C30. Enrolling physicians' blinded opinion of patient symptoms (6 symptoms assessed) were highly correlated with corresponding patients' responses. Serial administration of the English MPN-SAF among 53 patients showed that most MPN-SAF items are well correlated (r > 0.5, P < .001) and highly reproducible (intraclass correlation coefficient > 0.7). The MPN-SAF is a comprehensive and reliable instrument that is available in multiple languages to evaluate symptoms associated with all types of MPNs in clinical trials globally.
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