The Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF): international prospective validation and reliability trial in 402 patients.

Abstract

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.

• Authors: Robyn Scherber, Amylou C Dueck, Peter Johansson, Tiziano Barbui, Giovanni Barosi, Alessandro M Vannucchi, Francesco Passamonti, Bjorn Andreasson, Maria L Ferarri, Alessandro Rambaldi, Jan Samuelsson, Gunnar Birgegard, Ayalew Tefferi, Claire N Harrison, Deepti Radia, Ruben A Mesa
• Journal: Blood (Blood) Vol. 118 Issue 2 Pg. 401-8 (Jul 14 2011) ISSN: 1528-0020 [Electronic] United States
• PMID: 21536863 (Publication Type: Evaluation Study, Journal Article, Multicenter Study, Validation Study)

Topics

• Adult
• Aged
• Aged, 80 and over
• Bone Marrow Neoplasms (diagnosis, epidemiology)
• Cohort Studies
• Female
• Health Surveys
• Humans
• Internationality
• Italy (epidemiology)
• Male
• Middle Aged
• Myeloproliferative Disorders (diagnosis, epidemiology)
• Quality of Life
• Records
• Reproducibility of Results
• Surveys and Questionnaires
• Sweden (epidemiology)
• United States (epidemiology)